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meningitis & septicaemia can kill in hours!

People who are faced with meningitis and septicaemia have to act fast to help save a life.

Memory loss after meningitis

126 comments

Posted by Lisa Ellen on 21 August 2014

I had meningitis as an infant . In those days there was not the same kind of investigations or support for survivors. I went through my childhood with hardly any problems except memory and being clumsy.

When I was studying my poor memory came to light. Has anyone else discovered the impact later in life ? I would like to try and improve my memory but I really am not sure if this can be done

126 comments

Posted on 15 September 2014

Comment by heather marcia berry

this has helped me so much .had virel meningitis 6 weeks later bacterial memingitis ,then was diagnoed withCSF...that was 14 years ago then Encephalitis 6 years ago i suffer memory loss for such simple things then after awhile it will come to me & sometimes trouble putting words together..i am now 67 ,,,i gave up nursing because of it ,,

Posted on 10 July 2014

Comment by rachelgage

I had meningitis when I was just a baby. I suffered in school having an IEP for short term memory problems. Now I'm 25 and have noticed many issues I'm having and I want to know if its connected? In the last 6months I started getting severe migraines for weeks at a time. And I can never remember anything. The worst is when you are in an argument and you can remember what was said a minute before. The memory bothers me the most because it makes me look stupid and I'm not I'm not good at any subjects but I'm not stupid. Is there anything I can do I feel like I'm going to die from the migraines.

Posted on 02 June 2014

Comment by Hannah Durbin

I was a sophomore in high school when I got meningitis. I had a sinus infection about a week before I went to the hospital. I woke up in the middle of the night and I remember feeling terrified because I had no control over my body. I would think of words to say and different words would come out like "airplane" and "television". I couldn't feel my legs but I could walk. I had a stroke. After that I was taken to the hospital where I had my first spinal tap immediately. The doctors were confused because I didn't have a fever but my white blood cell count was incredibly high. I still couldn't speak or do anything for myself. That was the worst feeling out of the whole process. The pain was unbearable. It felt like I slept for a week straight. I was miserable. And the doctors had no idea what was wrong with me. Finally they told me I had the non-fatal meningitis and I went home a week later. I couldn't dress myself in the morning. I couldn't walk up stairs without wanting a nap. I was so lost in all of my classes and I had missed finals my GPA went from a 3.3 to a 2.4. A week after I came home I had another stroke in class. I was back in the hospital for two more weeks just so they could keep an eye on me and check to see if I would have any longer term issues. I was told my recovery time would be 6 months tops. I am now a senior in high school. It takes me at least three tries to read a sentence and fully comprehend it. I've always been good at math and now it is my worst subject. I feel close to the same pain I felt in the hospital every single day now. I have to take 800mg ibuprofen, it kills my stomach. I don't get much sleep at night. I got prescribed to adderall just so I could keep up with things. I forget so much. It offends people I love and it frustrates me. My joints a he as if I'm 65. I'm 18 years old. I thought I was the only one. I'm absolutely miserable. If there's anything that can help me with these things please help me.

Posted on 06 May 2014

Comment by Lisa Woolfolk

I was in hospital with viral meningitis last year. It started as severe headache, fever, sensitivity to light. This started two weeks after I had been discharged from hospital after being treated for severe blood clot.

I stayed in bed for couple of days with Tyenol and when headache didn't go away but got worse I called an ambulance to take me to hospital. In ER they did MRI and spinal tap.

They diagnosed viral meningitis and admitted me to hospital for five days where i received IV Acyclovir and other meds for pain. I had no appetite, my entire head hurt, eye sockets, earache,stiff neck, teeth, worse pain of my life.

Takes a long time to recover from this disease. I have learned patience. I still have recurring headaches, poor memory and severe insomnia. However, I no longer suffer with syncope. I would pass out without warning. Boom, wake up on floor. I could not drive during this time because I never knew when it was going to happen.

Sometimes every joint in my body aches, I still have hearing loss and tinnitus, I am able to work by taking lots of notes but the road to recovery has not been without challenges. I have muscle cramps that occur in all parts of my body. I had a stomach muscle cramp at work and the pain was horrible. I thought I would not be able to drive. After about 30 minutes, the pain subsided.

I would tell everyone in this forum that this is not some psychological illness in your head, although after effects can include emotional problems. I have had mood swings and sometimes severe fatigue in the middle of the day. The symptoms appeared after the meningitis. Even with prescription meds, I have problems sleeping through the night and experience sensitivity to light. I think I have permanent hearing loss.

All said though, I am lucky to be alive. I am tremendously thankful for that. I am not paralyzed. I am thankful for that. And I can write this post so have cognitive functionality. I am thankful for that.

Posted on 03 March 2014

Comment by Dustin Pitman

Im 21 now. I contracted spinal minigitious a few months before I turned 18 and i ain't able to remember anything before I was released from the hospital a couple weeks after I contracted it n my hearing comes and goes at random times n I get extream headaches if I try to think too hard or tget to recall past event s . People I'm close tho tell me I've changed allot some then . I have an extant short attention span. My sense of smell has extant heightened. Past the acreage persons smelling ability. Music is about the onlything that calls me down and that I can relate to. My back is always in pain. I about cried when reading all these stories cause I have no one I can relate tto. I feel everyone's pain. My only advise that I can give that helped me is. .. keep a daily journal of important events and things that people tell you that you've done in the past. Iff your like me it might cause a major migraine headaches trying to recall the memories but I promise it'll come in handy keyring a journal

Posted on 03 March 2014

Comment by Jason Cole

hi all, reading all your comments have made it clear that i am not imagining all off the things that are going on. i am 19 years old and fell ill with viral men in december 2013, only 2 months on and im finding my memory to be the worst affected. i am finding education to be the worst hit at the moment. i am trying to become an accountant and studying and the exams are extremely hard. i would describe it as being clumsy and forgetful. just forgetting what im doing, where im driving, my keys and phone. all the things that used to be 2nd nature before. it may sound silly but even writing this comment i forget where im supposed to be leading it to. i have read about therapies etc and wonder if any of you guys have tried anything like that before hand.

Posted on 06 January 2014

Comment by Abbey Turner

Reading all of the stories below has given me comfort that I am not alone on this issue with memory loss.

I had viral meningitis when I was 17 and now 5 years later I have still not fully recovered. Since the illness I have felt I have had to work a lot harder throughout my education as I find it difficult to retain information. Even just watching a film I can forget what happened within a few days!

I have just started out in my career, my manager can get very frustrated that I can not remember a lot from the top of my head, instead I have to write things down. The hard thing is that I felt I had to justify why I have to take a lot of notes and my manager still continues to make me feel stupid.

Thanks for listening :)

Posted on 27 November 2013

Comment by Cal Boy

I had meningitis two years ago and i'm just starting to recover from the depression now. The word foggy minded is seen throughout the discussion and well this is how i feel all the time. Im still functional but i feel i have lost about 40% of my intelligence. Im currently out of work and i am finding it difficult with interviews and stuff i used to do without thinking. I was on my gap year when i was hospitalized with it in Australia. Having read this page i kind of take comfort in that its not just me and I do wonder is there anything that can be done about memory loss and concentration issues. Thanks for listening

Posted on 20 November 2013

Comment by Kev M

Just called the advice line and spoke to an absolutely wonderful lady about memory loss. I have a massive amount of memory loss pre 18 years old. I am being shown photos of when I was a kid at school, holidays and have been over the years and I cannot even recognise myself. To be told by the wonderful lady this evening that I am not going nuts. This is something I have wanted to know since I was 18 and I am 44 now and to actually have the answers to a 26 year old question is a weight off my mind. It has explained a lot of other things, my depression, mood swings, the way I am (try to be a pillar of stone but crumbling inside) and have been can be attributed to this illness that nearly killed me. I know now that the amount of headaches that have increased over the years - again, there is a reason.
This lady was like a breath of air this evening and am so grateful to you for the support. A weight has been lifted off my shoulders. Taken me 26 years to have the courage to ask.
Thank you so much
Kev

Posted on 13 November 2013

Comment by Jeanie

When I was 6 months old, 1984, I was admitted into the hospital with a 107 degree temp. I was starved for 2 weeks, many blood and spinal tests and 2 hospitals later, I was diagnosed with bacterial spinal meningitis. I have suffered with bad eyesight since 1st grade (-9 in both eyes), academic issue (failed 9th and 12th grade twice, never got As or Bs). I started suffering from anxiety and depression when I was 18 and now being 29, I am also starting to suffer from memory loss. I don't remember anything from my childhood, I can't tell you where i've been, what schools I went to, what cities I have lived in. The list goes on and on and on. I am married now, and I have 3 kiddos. 2 of which who are disabled, autistic. I guess my question is, how is everyone else coping with all this?

Posted on 06 November 2013

Comment by David Paul

What can we take to improve memory after spinal meningitis

Posted on 31 October 2013

Comment by Heino Pretorius

I'm in a emotional State now as I am still recovering from Viral Meningitis. I can not believe how a lot of people describe the symptoms I Experience. This does not give much hope to live any further, this has put me in a State of despair. The First of February 2013 I was told that I have asthmatic Bronchitis which is normal form me. a Week late everything went from not be able to breath to the inability to maintain consciousness. This was supposed to be my last school year, But Know I suffer from Memory loss, both long and short term memory loss. I suffer from fear of anything that is Related to Hospitals, medicines. After the Episode of Meningitis I suffered from a case of Depression, not very severe but now I Suffer from Extreme to Severe Clinical Depression, which I have read can have a lot of Side-effects Similar to the consequences of Meningitis, Like: Memory loss, Insomnia, Lack of concentration, Irritable and so forth . After The Meningitis a lot of Things have changed I suddenly like different foods and I even lost the ability to do math and Science which I was Rather Good in. But in contras I have gained the ability to write poetry and understand it, which I could not have done before Meningitis. Because I now Have a Fear of anything medical Related I don't know How to better my current mental and physical state. I live in South-Africa Medical care is not a good aspect of this country. Any help will be Appreciated. Please contact me on: heino861@gmail.com. I really need Support from people who would understand.

Posted on 21 October 2013

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Posted on 19 September 2013

Comment by Shula KLinger

My father has suffered from untreated mental illness for his whole adult life. For a long time I have regarded his behaviour as indicating a Narcissistic Personality Disorder... which may indeed be the case, but he also had meningitis when he was 8, in Egypt. Having read Jessica's story here, I am beginning to wonder whether his mental health issues were already extant, but have been aggravated by the severe memory loss caused by the virus. Rewriting history is a common trait among NPDs, and being pathologically narcissistic, it stands to reason that any attempts to fill memory gaps would be made with alternating tales of grandiose achievements and dreadful persecution by others. Can anyone else comment on my totally unprofessional hypothesis?

Posted on 20 July 2013

Comment by Cristina Trip

I am shocked to keep scrolling down this blog and read so many voices describing what I've been trying to explain to so many doctors about myself before! Is there anyone out there doing some serious research about how to deal with this aftereffects? I'll like to share my story in hopes to get some help.

I had meningitis when I turned 18 years old. I was at the beach in my native Venezuela and got bit by a mosquito. High fever and big headache developed and my doctor there after running some tests diagnosed a dengue fever (westnile virus?), he prescribed lots of fluids and tylenol along with rest. Symptoms got worse after 10 days, I ended up at the ER with terrible migraine, neck pain, nausea, severe light and sound sensitivity and eventually, halucinations. A spinal tap confirmed meningitis and they drained some fluid to reduce the pressure, they shut down the pain with morphine and demerol. I was out of it for around 5 days, can't really say, as I don't remember much, only waking up in more pain and crying for more meds. Everyone was happy that I survived and no followup was done at the time.

I left the hospital not feeling quite well, but hoping it will get better, and it did, but never back to 100%. Today, I am 34 years old, and many of the symptoms I've carried after the meningitis all this years keep getting progressively worse with time, just a tiny bit worse that is almost imperceptible but looking back it is I would say 3% worse every year.

The symptoms are:

*Short and long term memory problems:
I have to rely on notes and iPhone reminders a lot for my daily stuff. I forget the keys and loose my sunglasses all the time. I forget where I park my car. It feels as if my mind it's always foggy and remembering names of people I just met is nearly impossible, also names of places or movies or specific things have what I call "the 10 minute gap" where I can't remember some name and I purposely drop trying to remember it and 10 minutes later after talking about something else, it just "comes to me". There are also memories from before the meningitis that have been completely erased, I can't really say how bad, but I find friends and family talking about things and places I was with them and I seriously can't recall anything, my mother sent me some pictures of our first trip to europe when I was 16 and many pictures I'm in I can't remember being there or if it was germany or italy or what I was doing.

*Weakness:
I'm just tired all the time, as If I need a nap, always.I also have no strength.

*Pain:
Severe neck pain that spreads to my upper and mid back, it is so bad and sensitive that I can't even wear a bra most of the time.

*Balance:
I never suffered from motion sickness until after meningitis, I get severely car sick, like a child. I've also noticed gait problems, my left leg is "sluggish" kind of trying to catchup compared to the right. My left arm is also weak.

*Tinitus and light sensitivity
The tintus has gotten really noticeable in the past 4 years, light sensitivity as well. I live in sunny California and feel like I need to wear must sunglasses indoors some times and outdoors as late as 8pm.

*Depression:
This one is tricky, as I attribute it to a side effect of the pain, hurting all day, does bring your mood down, but I've learned to cope on my own. Procrestination is also an issue, I have a long list of things to do, and most of them I can't just get around to until the very last minute, as if I need that "rush" of adrenaline to get it actually done.

*Sleep problems:
Another tricky one, as it changes according to stress levels, mostly trouble going to bed early and rising early as well. I simply can't function with less than 6 hours of sleep I'm like a walking dead and get very moody about it (irritable if poor sleep) but even if I sleep 8 hours or more, I wake up tired, as If I need another hour more, another nap at 10am.

*Bladder issues:
Urinary urgency I believe is the term, I've learned to manage this by really rationing water intake when I'm away from restroom areas, or else, I just know, as it has happened before, I can have an "accident".

*Tingling and numbness:
In my hands and forehead, also my legs.

I have a really top of the line health insurance and a supportive family that has enable me to look after my health. I began seriously researching for answers after 2004 when the symptoms really started affecting my daily life. I've seen over 16 docs. not counting all the alternative healers and crooks out there. I've seen famous New York City Neurologists, Beverly hills reumatologists and South Indian Aryuvedic doctors. I've done it all, from antidepressants and psychoanalysis, sleep meds, opiades, blood thinners, good old tylenol, massage, chiropractor, acupuncture, physiotherapy, cervical injections, steroids, even had some neck surgery were they burned the nerves coming out of my neck to shut down the pain (most effective so far but lasted 4.5 months before they regenerated) Shall I say more? gluten and dairy free diets, vegan diets, juice fasts, colonics, chi-quon, aura healers, faith healers, hypnosis, yoga, meditation, vitamins, kombucha, energy supplements of all kinds, you name it, I've tried it all.

I've had multiple MRI's with and without contrasts, standup and laying down, full body MRI, neck and brain CT scans. Neurological evaluations, extensive blood work and urine testing for hormones and thyroid and ruling out lupus and other wired things like MS etc.

I am a functional adult, an Emmy award winning producer, I've forked to mayor networks like Fox and had to sneak out on my lunch break to crash on my car in the dark parking lot for what I called my life saver "car nap" because most days it was just so hard to make it without it.

I'm looking forward to start a family and I'm really scared about not being able to be up to the challenge of being a mom and all the energy and strength needed for that. What If I loose my kid at the mall like I loose my car? or forget to pick them up like I forget the laundry at the cleaners? What If I'm having a bad day like it happens so many days when I can't get out of bed form the pain and I still have to feed and get a kid ready for school? How much longer can I pretend to be a functional producer when my desk is inundated by a rainbow of color coded posit notes of things to remember? But most importantly, What is my life going to be like in 5 years? I've learned to manage and hide my symptoms to be a functional adult, but it just keeps getting a bit worse every year, so what is it gonna be when I'm 45 or 50? Nursing home dementia? I might sound paranoid, but I've had such a bad experience with doctors and quacks, they have diagnosed me with Fibromyalgia, and also depression (not real diagnosis as I did not responded to treatments for those), they have found some awkward herniations on my cervical spine that are compressing the spinal cord but that are not big enough to require surgery. I've had to walk with a cane, I'm so tired all the time it's just so hard to workout so I struggle with 10 to 20 pounds over my ideal weight that I manage with extreme diets. I've been told so many times: "it is all in my head" and I say: "Yes! you are right! it is in my head and it started there, back when I turned 18 and had meningitis" but nobody believes me...

I feel hope on finding this forum, and hearing others are coping like myself, but what I would really like to find is some serious research being done, I'll be your lab rat if you like! but some kind of hope or serious study that gives at least a real explanation to why we suffer like this. It is very hard for me to comprehend that in this day and age, with all the technology available, something that happens in the brain has to be "such a mystery" and how we are all supposed to just be glad we are survivors and thank for our every "extra" day in this earth. I am not ungrateful, but I'll like a FULL day, at least ONE day when I feel like myself again, a day when I'm again 100% me.

Thanks for listening and your advice is mostly appreciated.

Posted on 28 May 2013

Comment by Alan Q. Pendleton

I had Viral Meningitis at age 17. The light shining through the hospital door had to be covered because it hurt my head so much. My father cried and thought I was going to die. It took a few days to get better. I am now 52. I have suffered severe headaches, light sensitivity, joint pain, back pain, and short term memory loss. But, I persevere. I have owned Porsches, Mercedes, Homes, have 3 successful children, and a beautiful loving wife of 28 years. No matter how bad the pain, no matter how hard it is to remember, how hard it is to walk, how you feel paralyzed when lying in bed... You can win. Someone in a job interview once asked me if I ever faced adversity, and I said "I face it every day". The thing is We all can win. Now time to take a Fiorecet :-)

Posted on 23 May 2013

Comment by James Bee

Wow reading through these sends a chill down my spine... I survived meningitis when I was 9 months old (I was born in June 1979 so it would have been spring 1980) and I have some pretty serious problems now. I have several children and am a well-adjusted adult and in fact extremely creative and adept psychologically but started suffering from cluster headaches in my late teens and am now facing increasingly challenging memory loss.

I have four children, three of whom live with me full time - to this day I get the middle two's birthdates confused and can't remember if my own mother, with whom I am very close, was born on December 5th or 3rd.

I find that my cell phone is completely full of notes, I rely entirely on my digital calendar to remind what to do and where to go on a daily basis. My desk at work is an explosion of post-it notes.

Strangely, I can remember some things vividly - I can quote entire pages from some of my favorite books, verbatim, and can remember how to play hundreds of songs on various instruments... but what did I do on Friday? Or was that Saturday...?

My partner is increasingly frustrated by my lapses in memory and it's beginning to be a real problem. My feeling is that it's a medical condition and being mad at me is unfair, it's like ripping on your cripple husband for having to walk all the way around to the ramp... I don't feel like it's my fault or that I can do anything about it, but it continues to be portrayed as myself simply not giving a crap or not paying attention.

Despite my best efforts, my memory remains an incredibly fickle thing. My entire academic career was a struggle and I only did so well because I learned to be a good bullshitter and I'm smart and could fake my way through it. Honestly, $50,000 of education and I barely remember a thing.

Just pouring my heart out here... seems like a place where others understand where I'm coming from.. thanks for the opportunity to vent ;) Namaste.

Posted on 13 May 2013

Comment by Celia May

I am so emotional right now reading this - I had pneumococcal meningitis twice, pneumoccoccal septicaemia & viral meningitis all between 1979-1981 & have spent my whole life (I am 47) thinking I was a failure: struggled through so many exams; worked so hard & passed so few. Tasks take forever to complete & I wish with all my heart I could retain information I have read, said & what other people say too. Is this really because of meningitis? - ok I daren't think this could be a real reason for being so incredibly dense!!! Positively, I travelled around the world for years, winter mountaineered amongst other extreme sports, have 2 gorgeous children & become seriously passionate in the arts. Is there anything I can do to help my memory even now? I deal with other physical problems but if I could train my brain this would help my whole being to get through the next 1/2 of my life & to show my children how to live life to the fullest.

Posted on 08 May 2013

Comment by Marie grieve

I also had b menningitis in 1987 I have memory loss it drives me mad i beat my self up in my mind why am I like this it makes me have low self esteem no confidence I don't remember much from early teen years .

Posted on 01 May 2013

Comment by rayomand zaiwala

My father had tb meningitis in february, 2013. Brain vp shunt was done to bring him out of coma, his meomory has written and he can remember everything. However due to weekness in legs , he walks with a walker. While walking on a stick he does not have balance, 2 and a half months have passed. Today is 1st may, 2013. Kindly advise when he can start walking normally. Will his strength in legs return to normal. He is 68 years old and leading a normal life before. Kindly advise as I am very worried. Rayomand , Mumbai , India

Posted on 19 March 2013

Comment by rosey

My son was lucky to survive bacterial meningitis and septicaemia when he was 4yrs old. We were not told about long term problems and were so relieved he survived we kept our heads down and got on with life.
We noticed he was not able to take things on board quickly, could not see the big picture and continually lost things and forgot things. The primary school teachers thought he had a funny learning pattern but nobody put 2 and 2 together.
When he started 2ndary school he suddenly had to write a page instead of a few sentences. He had 30 classrooms to choose from instead of one. He began to struggle at school. The busier he was, the worse it seemed to get.
He has just been seen by an Ed Psych and referre3d to the hospital. We have started doing cogmed brain training to strengthen his memory.
His teachers are brilliant and say he has above average intelligence, which will help. They feel it is a matter of presenting the curriculumn in a way that he can access e.g. using a p.c instead of writing notes, using rote learning so it goes into his long term memory extra time in exams etc. They think he has every chance of leading a full life going to Uni etc.
So don't give up! It may mean you have to work harder at things others can coast at but at least you'll learn to apply yourself more than others and you'll get there in the end.

Posted on 01 March 2013

Comment by martin devaney

im 55 had my right lower leg amputated at 1yr of age along with hideous scarring to my lower body my stump is scarred and twisted so wearing a prosthetic has been painful but im the only amputee boxer to compete against able bodied competitors in west australia i completed a 4 yr apprenticeship as a construction painter signwriter decorater with huge difficuilty at tech school i always wondered why i was such a dummy when my cousin was dux of the class but i perservered and worked at my trade till my late 30s till both my legs gave out . ive always been consumed with anger and react violently to situations i lived most my youth with relatives after my parents divorced and have been frustrated not being able to perform simple tasks although i taught myself blues harmonica and still play now i have headaches vertigo bad balance and get depressed no one ever told me that this can be caused thru my childhood disease , the only relief ive found is smoking marijuana and ive just been busted and have to front court next week i havent eaten for 3 days or slept im writing this at 4am cosicant sleep life sucks and than you die

Posted on 05 February 2013

Comment by Cheryl Davids

My husband is 62 years old, he had TB meningitis when he was 12, he stayed in hospital for a year and had to take a jar full of tablets for another year after. He used to have fainting spells when standing in the sun. He has no other side effects in fact his memory is excellent, but he has headaches almost all the time. One thing we have noticed is that since he has been eating more healthily the frequency of migraines has diminished. We have cut out instant coffee among many others like margarine, white bread,hardly any red meat etc.this seems to have helped but the main problem is when he is in the sun. Recently I spoke with our pharmicist who said perhaps the lesions caused by the TB meningitis could be causing the headaches. Can this be true and what can we do about it. Thanks for a place to ask questions.

Posted on 02 February 2013

Comment by Jessica Bennett

HI my name is Jessica and my friend was just diagnosed with Spinal Meningitis. Its been 2 days since the surgeries. He has definitely had some memory loss. He believes he is really good friends with people he has never met before and tells me a lot of memories that I dont recall ever happening between us. It seems as though he has come up with alternate scenarios that fit his best interest and have never occurred. I don't know weather to go along with the lies or to ease him into reality. Is this common? Should I be worried?
i

Posted on 30 January 2013

Comment by Gaz Williams

Hi all, ok here goes my events of 2012, I was diagnosed with Viral meningitus in april this year, this is the events leading up to it. on the monday 8th i was having a mild headache, i never have headaches, i carried on as normal, the headaches got worse as week progressed, on the wednesday i was having differculty looking into light, regarding pains, i was already in pain as i suffer severe problems with lower spine and lower neck (due to road accident in 2003 and operations) could not get out of bed on thursday morning, wife was concerned, but being me i told her i was ok, thursday eve i was in and out of sleep, friday morning wife had trouble waking me, finally she woke me, and all i could see was a silluete of here and white light every where (i thought i was dead), i asked to phone our surgery, she did this but they could not see me or send anybody out as they were busy (this was friday the 13th), after and hour or so the surgery rang back and told my wife to phone hospital, at about 3.15 pm wife rang hospital and they sent out medical team, and took me straight into A&E where i was admitted to ICU, it was there the 100s of questions were asked and i did not know what day it was even, they then had to ring to australia (i live in wales uk) for permission for me to have a scan, and they agreed and i was sent for scan, where it revealed excess fluid on brain, they checked me all over and found two small rashes, one in front under rib cage and one in rear at lower rib cage, they diagnosed this as shingles, so the DR turned around and said i have shingles on the bfrain as well, so they put me on a drip, 3 hours later i was getting worse, temperature sky high, diziness, eyes burning, DR examined again and said he was not happy with blood results, another 3 hours goes by, they sent my wife home and told her to ring hourly, 2 hours late they decided to do a lumber Tap, i have had a few of these before so knew what to expect, fluids sent of and about 4 hours later a different Dr came and told me i was being admitted as i had Viral meningitus and Encaphalitus, and shingles, i was put on acyclovir, but my vains kept collapsing, but they persisted and after about two weeks in hospital was given a feed direct to main artery as my arms were swollen and bruised through trying to get the needles in.
My symtoms eased and after a full 21 days treatment of this Acyclovir i was finally released from hospital, with no follow ups needed, it was june and i was clumsy,unbalanced, lost hearing in left ear, eyesight in right eye was very poor, and was losing my temper and becoming very forgetful and disoreintated, Went to see my Dr at my local surgery, who did not know anything had happened to me, akk he had on his notes from hospital was Shingles, i told him of my symptoms, he emailed hospital and 2 weeks later i seen the main dr on my case, she was shocked slighty in how well i was NOT doing, and made appointmenbts there and then with the appropiate Dr's, after all these appointments, ENT, Neurosurgeon, neurology, Optician and Oncology, apparently i need 9 months of physio for my lower neck, need regular eye tests, now on tablets for problems with bowels and water works, cant do anything about hearing.
my symtoms up till today are.
Tinnitus in left Ear
Clumsiness
Short Term memory Loss
weak on left side of body
very short tempered
not got full control over bowels or bladder
Headaches
lack of concentration
and i lose my balance if i look up.
this is ten months since i was diagnosed with VM, I have tried talking to my DR and i get very emotional when i talk to my family, i do not work anymore due to the Back/neck/knees problems, at this present time i feel very low, but i am alive and thats the way i look at it, i can write all this down but i cannot tell you verbally, its really strange. i am not sure if anybody else have had anything like this, but the Dr at my Surgery and my consultant have told me to "weather the strorm, it is to early for me to be thinking that i am ok. maybe i am expecting to much??

Posted on 16 November 2012

Comment by geraldine courtney

I had bacterial menningitis in mayof this year . I am still recovering. I am delighted to have discovered this site ,to know that i am not imagining all these side effects . I am 53 and suffer headaches ,depression, extreme fatigue.ringing in my ears,deafness in my right ear.muscle aches and pains. i also get sweating in my head face and neck. it is such a relief to know im not alone with these symptoms. i will not let this illness best me ,we need to be positve and keep strong and this site with all your comments has helped support me for this i thank you all x

Posted on 17 September 2012

Comment by Keith Baker

Hi I had Meningitis back in 1988 and still suffer from the effects.
As i got older I too was effected with severe memory loss and developed dyslexia, but since i was diagnosed 20 years ago i have been able to use many programs for the computer and have been able to work with support and have found away to retrain my mind.
This has enabled me to go through University and become a teaching assistant and now i work with young people with learning and behavior issues, through arts.

Posted on 11 September 2012

Comment by Sandy Martin

I just had bacterial meningitis this past March 2012 I was in ICU for 3 days and I have no memory of any of it. I was told I almost didn't make it. I'm having a hard time still remembering things. I have a hard time hearing things too. Some days are good but there are a lot that aren't. same with my eyes. And the headaches. Will it ever go back to normal?

Posted on 14 August 2012

Comment by Laurie Hannigan

Hi Danielle,

I hope you received the reply sent to you by email from the helpline.

It is good that you have been to your doctor about your worsening headaches. For anyone who has after-effects as a result of meningitis, it’s still important to bear in mind that any new symptoms or changes this long after meningitis could have some other cause that needs to be addressed. Also, it is worth mentioning that some people do find alternative therapies helpful in dealing with recurrent headaches.

Posted on 14 August 2012

Comment by Danielle Balma

I was diagnosed with meningitis 15 or 16 years ago....I can't remember exactly. I don't remember how long I was "out of commission" and my entire childhood memory before that is blank. I vaguely remember relearning to walk and that I had to wear an eyepatch over one eye to see things such as the television or to look at things far away (I had double-vision). I too have had a difficult time with my memory since then and have suffered from headaches for as long as I can remember. Although it is frustrating, I have learned to cope with some of the downsides/after-effects of the illness. I have recently been seeing my Dr about my headaches (as they have been getting worse in frequency and duration), but I am getting frustrated with the fact that when they get bad enough, I have to go back to the emergency department.....which has been more times than I am comfortable with. I'm 27 and would like to have this figured out by the time I am 30. Does anyone know of any good doctors who possibly specialize in our types of cases that are also close to (or in) michigan???

Posted on 08 August 2012

Comment by Shirley Gieron

Hi Andrea
Acyclovir is prescribed for viral meningitis. There is usually improvement over time but a small number of people do have problems with fatigue, memory and concentration. I am sorry to hear that this cost you your job. If ever you wish to talk please call the helpline 080 8800 3344. We would be pleased to talk with you

Posted on 08 August 2012

Comment by Andrea Phillips

What a relief! I thought I was just trying to find an excuse for my forgetfulness. I would read things and know I had read them but they just did not register...it cost me a job! I have an appointment with a neurologist next week but am still convinced that I'm trying to find an excuse for my forgetfulness!

Posted on 30 July 2012

Comment by Helpline Team

We hope Bernadette found the information sent to you helpful, we welcome discussion on our blog. Our helpline is available on freefone 080 8800 3344(UK) 1088 41 33 44 (RoI) or email helpline@meningtis.org

Posted on 28 July 2012

Comment by bernadette gilligan

Hi everyone,on the 23rd of june this year 2012 i ended up in hospital for 16 days. It all started when 2 days previous i had an injection in my back for chronic back pain.This was done by my mucular skeletal dr. This injecction left me paralyzed from the waist down for about 5 hours. I was sooo upset as I had looked after many quadraplegics in my nursing career and situations were flashing through my head of how they must of all coped, I was glad that i was always patient and caring. After i got my feeling back i was able to walk slowly around my house hanging on to the furniture. But the pain that started occuring was worse than the pain i had originally been treated for. I had upper back pain and severe headaches that i never get. I knew something was just not right so i rang the ambulance and they took me straight to hospital where they diagnosied me with bacterial meningitus,, the doctors and nurses were wonderful, I am home now but have weekly visits to the hospital for blood tests and another mri that i have to have in 2 weeks. I am already experiencing memory loss, my eyes have gone down 2 and a half levels and my hearing in the right ear down by 1 level. I have the occasional headache when i wake and now instead of jumping straight in the shower when i wake i have to have breakfast first so i have the energy to do so. I am a very motivated person and i will not let this get the better of me, i have 5 adult children and 5 grandchildren. and I want to live till i am at least 90. I am only 51. I wanted to share with you all a very good sight for all of us which is called lumosity which helps with memory and brain training. You do not have to subscribe as there are free games to try out. I have never subscribed and get enough from the free games. I encourage you all to give this a go as it is a good test for all of us to see how we are going with our memory loss and it is also fun. I hope this helps some of you as i am using this site more than ever now. I have noticed i have gone down in levels but with determination and constant playing i am sure i will get back to the level i was before i got the baterial meningitus. Good luck everyone

Posted on 18 July 2012

Comment by kiran rawal

Im kiran rawal my mother sharadha have been suffering from meningitis she is unable to guess whom im she lost her memmory

can she regain her memmory back

Posted on 10 July 2012

Comment by yvonne bowe

I had bacterial meningitis when i was an infant and was very close to death. i don't remember it and i would have been one or two years of age at the time. I'm 47 now and I can't really say until i heard a news item on the radio about it today. i don't know if i have any long term effects because of it but its very interesting to read some of the comments here. I don't know if I have any memory problems because of it though I do admit to being a bit erratic on the memory side of things. That could be just because of being preoccupied with other things. Anyway interesting site. Would be willing to be part of any ongoing studies of survivors of infant meningitis Yvonne

Posted on 02 July 2012

Comment by jeanette philopulos

I too contacted viral meningitis, its nasty. I went on a school field trip with my grandson, i started getting the worst head ache ever. 3 days later could not shake the headache. After 3 trips to the hospital, they did a spinal tap and hospitalized me. I dont hardly remember anything after that. I dont feel the same now. Where can I turn???

Posted on 11 June 2012

Comment by Natalie O'Neal

It is refreshing to read other peoples comments and know that I am not alone in my memory loss. I had viral meningitis twice -- once is 1992 and again in 2003. It never occurred to me until last year that my memory loss could be related to the vm. I used to be known for having an excellent memory! Now, I forget phone numbers that I've known my whole life, why I went to the grocery store, and I could go on and on of life's most simplest things that I seem to forget. It is extremely frustrating and people don't seem to understand. It no doubt affects my daily life professionally and personally.

Posted on 18 May 2012

Comment by Rie Ogata

I had viral meningitis four months ago. It is true that memory disturbed, clumsy are present. After the third spinal tap in twelve days, I developed dizziness, low back pain, body instability ‐balance is messed up ‐now I am still suffering from it . The third spinal tap messed up my equilibrium. Before the third one, I doing great that thinking of discharge from hospital. I wonder how many spinal tap everybody received in a short period.

Posted on 08 May 2012

Comment by Valerie L Zarate

Hi ! It is definitely a relief to find an outlet or network of others who can relate to my situation. June of 2007 i was stricken with bacterial meningitis and septicemia. When I awoke in the hospital two weeks later with no idea where I was or that I was I'll. I believed. no one. I thought someone was setting me up to be institutionalized, especially my husband. Although he had been by my side the entire time. Even when I was not able to have visitors of any kind. I noticed bruises and sores on my body and blamed my husband for doing it to me. I was so afraid for my father to see me and find out what I believed was mistreatment by my spouse. In actualality it was from being combative and nonresponsive. I had to be held downand restrained by my husband hospital personel and policemen. Went to er two days in a row by ambulance with combativeness and nonresponsiveness. Each time my family was advised to take me home and refused to send me to a hospital with better facilities. They said take her home. My family finnaly took matters into their hands and got me to another facility. All the while my husband had to fight with me to keep me from opening the car door and crawling all around the car. Today I suffer after effects of meningitis and septicemia. No reading comprehension skills remain. Severe short term memory loss. Confusion,inability to focus, arthritis, extreme muscle pain and weakness. To the point of being nonfunctional . I have had many falls due to balance issues. When I walk my legs become weak to the point I can hardly feel them. I seem to stay in my own little bubble like and find it difficult to do even the most simple things. Any activity completely wipes me out. I'm moody, depressed, physically ill most of the time. And obviously unable to return to my previous career. Nursing!! Pretty much been without a living space since the incident with no proper way to maintain my living. My family doesn't seem to get the fact that their are long term effects involved here. It's true some things are better and some will never be. Having Pla e of my own again would probably help with the depression some but my brain seems to be stuck I've had great difficulty with business
And presence of mind to accomplish the task of finding funding or even to maintain a job. Being dependant on others is not who I am or was. I really loved nursing. The caregiver role, not the receiver.

Posted on 03 May 2012

Comment by Kate davolos

I had bacterial meningitis when I was 12 years old. Three weeks in the hospital.. I re-learned to walk in the hospital rather quickly.. I had terrible dizzy spells for a few years following.. I am almost completely deaf in my right ear. I have only a handful of memories from childhood, and just assumed that was normal. Others seemed to remember SO much more than me. I Am now 31. I have a very spotty memory. Even important things like my wedding day and the birth of my 2 children are kinda a blur... I remember only bits and pieces of things I should remember completely. So sad, but I am glad to hear that others have the same issues. Thank you everyone who has shared and good luck.

Posted on 02 May 2012

Comment by Gayatri dahal

My aunt had meningitis two years back.she then was fine with all the treatment given in hospital.presently she is having sudden onset of memory loss to the extent that she is unable to do her daily routine activities,she doesnot even recognize any of her belongings..The things she can do is she can eat if it's supported by other and go to the bathroom and toilet..Is it really a sequelae of meningitis or something else?..if yes then what is the duration between the onset of meningitis and the memory loss?and will she recover from her ongoing problems?

Posted on 28 April 2012

Comment by Michelle

I had viral meningitis in Feb 2012. (I'll never ignore a 5 day headache for the sake of not missing work again!). I went back to work too early and t took me a week to realise I had short term memory loss. Those first few weeks were awful. I eventually learnt to write everything down, but my boss honestly does not believe me and still belittles me for forgetting things. I can listen to conversations/meetings that I used to be part of/chair, and not understand a word that goes on, leaving completely bewildered. When I drive my car I find myself driving down the freeway in 3rd gear, having forgotten to change to 4th & 5th completely (very unlike me!). I walk up and down supermarket aisles forgetting what I'm there for, and leave with trolleys full of stuff I already have. I do Karate, and am going to have to quit soon as I can't remember anything new being taught (but the old stuff comes back) and I cant remember the name of a Kata i've been doing for weeks on end.

It's really distressing, but no one seems to understand or believe me. A lot of people just treat me now like I'm a bit stupid. I'm not, I am just a bit slower with "new" things. I'm so glad it's not just me, but am upset for myself and everyone else who suffers this. I sometimes think I should be in a dementia ward, particularly when I am tired. I guess it's something I will have to deal with and learn to live around, but it really doesn't seem fair, does it?

Posted on 25 April 2012

Comment by Thomas Hammer

I had bacterial meningitis as a 3 yr old and am now 31 yrs old. The infection has affected me in some of the craziest(at least to me) ways. Ive never had to wear deoderant, as my body doesn't put out the hormone or phermone or whatever out of the pituitary to create the bacteria that causes this. Ive had a cyst my whole life right in the middle of my brain that gives me this awesome ability to do small math super fast, but no short term memory. my long term memory is stellar compared to most. i was clumsy but after lots and lots of work with tumbling and acrobatics i am finally just now reaching a comfortable point with my dizzy life and siezures. im sure that if i die of natural causes it will be to something to do with that cyst. but the way i look at it, most of the kids that were in the hospital bed at that age in 1980 probably didnt make it out of there or much further than that. dont give up, and help your loved one out or if its you learn about the disease early on and its aftereffects so that you can minimalize the impact it can have nagatively on your life so you can make the best of what you do have. im not boasting or saying that im better or worse than any one else, cause really we would all probably be better off not having met this horrible disease. im just saying take it day by day and do whatever it is that keeps you going and you should figure it out. even if you dont ive always looked at it like im on borrowed time anyways so love what you have while you have it. no matter how bleak it may seem.

Posted on 20 April 2012

Comment by chandani bhandari

my brother suffered when he was only 2 yrs old from the meningitis b. he lost his memory 100% even at the age of 18 he behave just like 2 yrs boy. please give any possible solution to do at least something.

Posted on 17 March 2012

Comment by Josese Ravu

My son was a normal yr old when he got diarrhoea and stomach ache. The next day he got dysentry, newmonia and fitz. He spent 7 weeks in hospital. Was criple sort of when discharge on his birthday 31st May last year. Still speechless and sort of loosing concentration til today. I need help

Posted on 09 March 2012

Comment by Sharon McClease

I just came across this site while looking for after effects of bacterial meningitis. When my grandson was 2 weeks old he was diagnosed with bacterial meningitis. He was hospitalized for almost a month on IV antibiotics and had several spinal taps. Is this what he has to look forward to? I was researching because he is late talking and clumsy when he walks. He is suppose to be evaluated in a couple of weeks by a PT about the clumsiness. He is now 18months old. Is there any research out their for this disease like it is for cancer etc.? I am astounded and sadden by all of your comments and will pray for you all. I am ready to take action if there is anything that I can do to help my grandson and the rest of the patients who have fallen victim to this horrible disease. Are there test or anything that they can do preventatively or do we just sit and wait as years go by to see what happens. This is 2012. God Bless You All

Posted on 29 February 2012

Comment by gillian lappin

I had bacterial meningitis b and septicaemia in Jan 2008 ,four year ago.I had the horrific experince og being rushed to hospital by ambulnace(phoned nhs 24) then being sent home again as I was merely suffering from flu and wasnt ill enough to admit.It was suggested that an ambulance hadnt been neccessry!At that point I had almost evry sign of both diseases including a rash which I could see growing in front of me.I would have died at home(and indeed I did as I expereinced a leaving of my body) had I not fitted and fallen out of bed.I awoke 7 days later ,unable to see in ITu having been on life support and it wa stouch and go if Id survive.A further 3 weeks in infection unit and was desperate to be home so didnt take up the offer of respite /rehab and it wa sa mistake.

My worst after effect is 24/7 dizziness and feeling that brain is moving and spinning,nausea,migraines,visual distortions like the wall seemimg to nbreathe,floor coming up to meet me.I am on crutcjes and have a wheelchair for distances.My balance has improved over the years ,but not the dizziness.

Memory loss is very upsetting.I used to be a teacher and now find I have forgotten even basic things eg I couldnt remembe rhow to subtract ! I said this while in hospital as I was unable to remember my childrens dates of birth so asked a freind and rtreied to do a sum to work out what ages they wwrer!I was really frightened and told Dr who laughed heartilly and said yes sometimes theses things go with Meningitis but it would soon come back ! alas 4 yrs on and umpteem demonstrations by my children I still have a total blank.

Same thing withprocesses like switching on computer,tv,i player -I have to have it all written down on bits paper so we have stick it s all over the house !

People will tell me something and withoinn a few second I realse I cant remember what has been said.I is very frrustrating both for me and everyone else and my husband and children get really cross sometimes as they seem to think I dont remember because I dont care!Sme day,especially if Im very fatgued I suddenly think I cant remember even my kids names or best friend,though I d never admit to that.

Often Im mid-sentence and them stop as cant think what was coming next.

Does anyone have any tips on coping,or even improving this memory loss.I do take omega 3 oil which is supposed to help brain function but dont see it having much effect.

It is really good to come across this forum and realise I am not alone.Thank you MRF for connecting us all.

Posted on 20 February 2012

Comment by Danny

I had viral meningitis about three weeks ago. I was in hospital for ten days . It was the worst experience of my life. My body still does not feel the same I can t bend completely down yet and I feel utterly frustrated. Also I have constant zinging in my ears and have headaches . I know that I should give it some time but it's so hard for me as I have never been this severely sick in my life. I am finding it really hard to adjust.

Posted on 18 February 2012

Comment by Athene Peel

I suffered from meningitis when I was six months old; that was in 1993, and only now am I beginning to connect things like short term memory loss with it. Until recently I thought that it was normal and maybe I was just a bit ditsy, but having read all the above comments and researching the after-affects, am I starting to see that it is not only fairly common thing for those who have had it, but also that, like them, it does not have to affect ones life too drastically. I am just finishing my A-levels and had I connected my bad memory to the meningitis, I may have sought support, but thanks to everyone who has spoken up about it, I now know that it's an option for the future.

Posted on 18 February 2012

Comment by Daniel Hawkins

I contracted bacterial meningitis back in 1974 when I was 9 months old. I have been completely deaf in my right ear since then, but dealing with that is the easy part. I have always had problems speaking because I talk very fast, and my words run together. Even when I make a concentrated effort to slow down and enunciate the words, I still often can not articulate very well. My lifelong speech problems created a type of social-anxiety disorder I have also been dealing with every since I can remember. I am always afraid of saying something stupid, or being looked at as stupid, and as a result, I have a very small social circle. I have always had problems with my short term memory as well. My long term memory is fine; I can remember my childhood, and events quite well, but when it comes to remembering what I just heard or just read, I often forget. I went through most of my life thinking I was stupid because no matter how much I studied there was always a low ceiling for what I could remember. On more difficult and challenging subjects such as Algebra and chemistry, my head would literally start spinning, and mental walls would prevent me from learning the information. I did not do well in high school at all; in fact, I barely graduated. It wasn't until about 10 years ago when I first discovered "Google", and researched the after effects of meningitis that I learned what has been causing all my problems over the years, and -most importantly- I finally realized I wasn't stupid, just brain damaged. I have been able to earn an Associates degree, and I'm about a year away from completing my Bachelors degree. Before I discovered the source of all my mental deficiencies, I would wonder why I wasn't a better student, and it bothered me so badly because I always thought I should have been able to accomplish more academically. I guess I'm writing this to let anyone out there who is dealing with similar issues that you are not alone. I know exactly what you're going through; as do a lot of other people. Just don't give up, and don't let this send you into a depression. You can overcome the obstacles, and you won't have to do it alone.

Posted on 15 February 2012

Comment by elizabeth barnes

I had meningitis at 6 months of age back in 1948. At the time I was fortunate that penicillin had been introduced as an antibiotic, otherwise...? I do not remember details and events that my siblings recall easily. I was also dubbed a 'slow learner' and have a lousy sense of balance especially in the dark. It only recently occured to me that my bad memory may have been due to meningitis. Thanks!

Posted on 15 February 2012

Comment by John Munoz

I was diagnosed with bacterial meningitis back in 1996. I lost my sense of smell, touch, site, in other words all my senses were out of whack. It took a few months for everything to get back to normal. Now that I am 36 yrs old my memory is really bad. Any advise of what I should do? Any treatment for this? Looking forward to this discussion.

Thank you,

J. Munoz

Posted on 13 February 2012

Comment by Marie Gouldsbury

I had meningitis in October 2005 at the age of 25. It was never confirmed if I had bacterial or viral because the day I started feeling sick I started antibiotics. That was a Sunday. Wednesday and Thursday I had massive headaches and high temps. My 10 month daughter had cocksackie which is a type of viral meningitis. I was quarantined in the hospital for 10 days and on IV antibiotics for 17 days at home. I have since had the worse memory loss. Not just long term and not just short term.... Mix of both. I'm relieved to see I'm not alone.

Posted on 02 February 2012

Comment by torian g

I was 20 when i was diagnosed with bacterial meningitis. When I first became ill i thought it was the Flu.. for two days i had the worst headache anyone could imagine and a high fever. By day three my mom found me under my bed in the fetal position covered in vomit. I was non responsive. I was in a coma for a week. The doctors told my family that i was most likely not going to make it. After being int he hospital for a month and having to learn how to walk again...here i am.. The scariest part is that once i awoke from my coma i could not even remember the faces of family and friends that were visiting me. Now i am 39 and my memory is shot to hell.. people think i fake it but they dont understand what i go thru on a daily basis. My worst fear is that one day i wont remember my children or who i am...

Posted on 28 January 2012

Comment by Terry Friesen

I had meningitis when i was 16 months old. I am now 44. I have severe enough hearing loss in my left ear to need a hearing aid as well as less severe hearing loss in my right ear. My hearing loss started in my thirties. My memory is terrible. I do not seem to have retained many memories that other have. Some periods in my life more so than others but still significant memory loss. I am finding that now alot of times i go to say one thing but wind up saying something completely different. But sounding close. I am a borderline insomniac and suffer headaches. Not all of them from grinding my teeth. Lol. I do seem to get angry rather easily and have been called cold on occasion. My health is not to bad. Nothing serious besides the meningitis. That and a condition called vasovagal symcope. To put it in lay,ans terms, a pre fainter. Dizziness and a whole lot of. Rap that goes along with it but not life threatening or anything close. It is good to know others are experiencing these same symptoms and i am not kust losing it.

Posted on 07 January 2012

Comment by Enice Jeanette Laseter

I have a friend who is in the hosiptal now for three weeks she had e-coli but has not recover the way she needs too; they do not know why she has loss most of her memory and gets names mixed up and will call you somone else.She has not been able to walk feed herself of even set up without help . She is 78 and i am very worry about her. What could this be no one or doctors know what is going on. I have read some about E-coli Meningitis and i wonder if this could be what is going on.Thanks for any help you can give me so i can tell the doctor's to try.

Posted on 20 December 2011

Comment by catt nguyen

I was diagnosed with Bacterial Meningitis early this year. I am relieved to come by this site knowing im definetly not alone. I recovered with long term n short term memory loss, clumsiness, severe head aches, tiredness and some joint pains. I was hospitalized for a little over two weeks, and after that i was in and out. I was put into induced coma and had my spinal tap. I woke up not remembering the faces in my room, it took me a minute to realize who they were. Although till this day i still have no memory of being hospitalized. I went on for a few months being in denial and that my memory n everything i recovered with was normal, until it took a full effect on my job and personal life. I am an executive cordinator for a cosmetic company, worked for them for about seven years, i use to love my job and love being at work... but with my memory taking over it was hard for me to function. I can barely remember my employees name, im often in meetings n teaching seminars and finding myself in really akward moments. I can barely hold conversations. It all led up to frustration and how i was treating others around me. It takes something or someone to help jog my memory, i often have flash backs or i guess u can say deja vu. I wake up n forget that i even have a memory problem n just go about my day. And when i do remember, i would flood myself with notes, or constantly on my phone putting things down when i can. It still is hard for me to get use to things. I would wake up n read some of the things i write or talk to my friends about stuff and have no idea it happen. Places events conversations the whole nine yard. Its very difficult because friends n family would assume im being dis honest. Id forget how to get to my friends house after being there a million times, forgetting which subway to take home, how to get to work sometimes. I find it worst when i am extremely tired that my memory is worst. I find myself not wanting to fall asleep sometimes because i was afraid of waking up n not remembering nothing at all. I am 26 weeks pregnant, n still employed for the same company. Although i am still struggling, i have great supporters. I try n write to myself everynight... its alot to get use to. And definetly challenging.

Posted on 12 November 2011

Comment by Harriet Douville

II had spinal meningitis at age 2 my mother said I WAS IN A COMA and when I came out of the coma I couldn' walk or talk( I was before I was got sick) At 4 years I still weren't walking.. Now I am 83 years old and walking and talking I always had a speech defect and poor balane, found out several years ago thatI have one leg shortewthan the other. My memory iwass't too good when younger..but I wrote two families genealogies..

Posted on 02 November 2011

Comment by Christine Miller

I have been struggling with my daughter tonight as she seems not to have grasped any of the phonetics over the past 3 years at school. I went on line to see if I could find something re. learning difficulties which could account for this.

WOW..she barely survived meningicoccal septicaemia when she was 6 years old...I was told that there would be no lasting symptoms by my GP. I was just so happy that we had not lost her at the time, I did not seek further advice and support. I am sooooo cross that my GP is ignorant of the after affects of her condition.

By coincidence i too have had viral meningitis caused by herpes virus 4 times. The first time I was unable to see for 6 months and was hospitalised for over a month. Again I was given no support and basically was sacked from my then role as I could not perform effectively when I returned to work. I thought I had lost my marbles as I was never able to focus and concentrate effectively again.

I cannot thank this site enough, as it allows me to now visit my GP tomorrow and seek support for my daughter.

Why are the medical professionals ignorant to this disease?

Posted on 15 October 2011

Comment by A K

Wow, I am so thankful to have found this website. I am now 36 and had meningitis when I was 9. I don't really remember my childhood at all prior to having it it. And as time goes on, I find that I just don't remember things in my past like others do. It really bothers me and always had, I just didn't realize others experienced this as well. I'm just glad to hear I'm not the only one...

Posted on 08 October 2011

Comment by Paul P

I was diagnosed with viral meningitis at the age of 9, after experiencing a seizure. At one point the left side of my body was completely paralyzed for approximately a month. I am now 34 years of age. I have been struggling with both long and short term memory loss. I have beat myself most of my life - telling myself that I didn't remember things because I "simply didn't care to". This would include remembering my own father's birth date. Although I'm sad that there are so many of us evidently experiencing these incredibly grave after-effects, it is very comforting to see that there are others out there, and that what I'm experiencing is not my fault or choice. I am a Mgr. at a very large financial institution involved in complex software QA testing. I struggle to retain important information constantly. I have to keep lots of notes and visual aids around my office to keep me from feeling completely frustrated and hopeless. My memory issues have greatly contributed to the level of anxiety I feel from day to day. Wish there was something I could do to change things. Finding you all and this place has already helped me.

Posted on 03 October 2011

Comment by Clark Bannister

I collapsed at my desk back in April 2010 with what they think?? was Bacterial Meningitis and Encephalitis. Fortunately i work in the hospital where i was cared for and have been told by the doctors that if i had been anywhere else i probably would have died.

I spent 3 weeks in hospital and it took me 6 months to get back to work full time. I'm still finding it very difficult to concentrate at work and my memory is very poor these days. The tihing i find most difficult is finding the words to say when speaking to people, it has effected my confidence massively and i feel like everyone most think i'm stupid as i often get the words out in the wrong order or begin words with the wrong letters.

The illness and subsequent problems have also had a huge effect on my personal life as i now suffer a shorter temper and this has led to my wife leaving me recently taking my daughter with her.

But i still consider myself very lucky to be here today and from others posts i can see that many of you have suffered more severe, longer effects than myself! Hopefully i will be able to run in next years London Marathon for Meningitis.org and raise money to investigate this terrible illness!

Posted on 29 September 2011

Comment by Jessica Blane

I was diagnosed with viral meningitis at 10 days old. I struggled with memory problems (especially names!) through elementary and high school. I use to have boyfriends tell me over and over again about our first kiss and how we even met. I did realize there was one major positive about memory loss though, I never held a grudge. I was always the happiest person around cause I forgot all the bad stuff that people did. An MD told me that any memory problems I had due to the meningitis was permanent. Once I hit college everything changed though. All the sudden school became so easy, I was remembering everything SO much easier. It took me 18 years but my brain somehow created new pathways to work properly. So any of you who was told it's permanent, don't give up. The brain can do amazing things.

Posted on 21 September 2011

Comment by Sandy Dawson

I contacted spinal meningitis in 1977, I was in 7 or 8th grade. Was unconscious for 3 days, woke up strapped to a bed due to hallucinations and uncontrolled movements. My mouth was a complete sore as any of us who have had this horrible disease knows. Lucky for me a military doctor had just diagnosed a case overseas and he knew immediately I was in trouble, did the spinal tap on site, no meds, mom said I was totally out of it with my eyes rolling back in my head. I lost most all my memory from childhood before and struggle with memories thereafter more than most. People always wonder why a person at 15 would have no memory of their past but thats my life and yes, I also never realized it until later in life. My dad always said I was never the same person.

Posted on 21 September 2011

Comment by Sandy Dawson

I contacted spinal meningitis in 1977, I was in 7 or 8th grade. Was unconscious for 3 days, woke up strapped to a bed due to hallucinations and uncontrolled movements. My mouth was a complete sore as any of us who have had this horrible disease knows. Lucky for me a military doctor had just diagnosed a case overseas and he knew immediately I was in trouble, did the spinal tap on site, no meds, mom said I was totally out of it with my eyes rolling back in my head. I lost most all my memory from childhood before and struggle with memories thereafter more than most. People always wonder why a person at 15 would have no memory of their past but thats my life and yes, I also never realized it until later in life. My dad always said I was never the same person.

Posted on 27 August 2011

Comment by Elizabeth Maria Ramfopoulos

Ek is so dankbaar om hier te lees dat mense met "meningitus" tog wel gesond geword het. My sister is 49 en is tans nog in highcare. sy het op Vrydag 12 Augusus 2011 siek begin voel en gekla oor haar nek wat styf voel en kopsere. Saterdag oggend drie uur in die oggend het haar man wakker geword van 'n gil en dit was my sussie se eerste fit ( wat sy nog nooit gekry het nie) Hy het die paramedisie ontbied en hulle het haar gestabiliseer. Die middag het hy haar na haar GP geneem wat voorgestel het sy moet gaan vir 'n MRI. Op die stadium wou my sister nie gaan nie want sy werk vir 'n spesialis Internis en het goedgedink om vir hom te wag. Sondag 13 Augustus 2011 het haar toestand vererger en het sy deurmekaar begin praat en het 'n hoe koors gehad. Ek het haar man versoek om haar dadelik hospitaal toe te neem. By ongevalle het ons vir die dokter aan dies al haar simptome vertal, hoe koors , stywe nek, kopseer agter in die nek en disorientasie. Hulle het bloed getrek en later vir ons gese dat haar bloed baie sleg lyk. 'n drup is opgesit en hulle het gese hulle gaan 'n internis kontak. Die internis het nie die Sondag opgedaag nie. Maandag 14 Augustus is sy in 'n gewone saa , sonder medikasie aangesien sy( my suster) die drip uittrek omdat sy nie weet wat sy doen nie. Sy het met tye baie deurmekaar gepraat en dan herken sy ons en dan weer nie. Sy het koorsig voorgekom en ons het met die saal suster gaan praat en se ons dring aan dat die internis kom kyk want daar is iets fout met my susuter. Hulle het gedink sy is so deurmekaar en doen die snaakse dinge as gewoonte. Dinsdag oggend 15 Augustus 2011 het sy 'n groot fit weer gekry terwyl sy rongeloop het in die gange en nie kon slaap nie. Daar is 'n paar toetse op haar gedoen en daar is voorgestel sy moet ICU toe gaan. Sy het self ICU toe geloop . Die aand toe ons gaan kuier was sy baie meer deurmekaar en het baie sleg gelyk.Woensdag 14 Augustus 2011 het 'n neuroloog voorgestel hulle doen 'n lumberpuch op haar en haar siekte het 'n naam gekry.. Meningitus. Twee fits het weer gevolg na die lumberpunch. My suster se toestand het baie agteruit gegaan. 'n CT scan , weer MRI en meer bloedtoetse het gevolg, sy was in 'n koma en op 'n asemhalings masjien Donderdag, Vrydag en Saterdag. Saterdag oggend het sy wakker geword, nog baie deurmekaar, kon nie praat nie en het ons glad nie geken nie. Haar bloedtoetse het egter verbetering van die virus getoon.Daar is vasgestel sy het meningitis met die Herpes tipe 1 virus het en haar imuun stelsel is baie swak. Saterdagoggen het sy weer 'n klein fit gekry, Saterdag namiddag het sy bietjie verbeter, Sondag kon sy in 'n stoel sit. Maandag 21 Augustus 2011 die oggend is die asemhalings masjien afgehaal. Dinsdag tot Donderdag 25 Augustus 2011 kon ons die liggaamlike verbetering sien maar sy kon nie praat nie.Vrydag 26 Augustus 2011 koop ek vir haar 'n journal en vra al die besoekers om vir haar iets positief in te skryf. Ek gee die boek vir haar en vra om vir my te skryf. sy skryf mar ek kan niks uitmaak nie. Ek skryf toe twee woorde en sy erken drie letters uit die woorde. Sy skryf toe self die woord "cell" en ek vra of sy my nommer wil he, ek lees en sy skryf, alhoewel haar brein soms vashaak bv. as jy 3 see skryf sy 33.( drie .. drie) Ons was oorstelp van vreugde. Ek het vir haar 'n tydskrif gekoop en gevra sy moet vir my lees. Sy spreek sommige woorde soos bv. is as die engelse is uit. sommige woorde sukkel sy. Vandag 28 Augustus 2011 toe ons by die hospitaal kom is sy van ICU na HIGHCARE toe geskyf en my suster het weer baie deurmekaar voorgekom. Ek het weer die boek gevat en vir haar gese sy moet vir my skryf. Ek skryf vir haar ons name bv. Maria dan skryf sy onderaand my naam weer en langs my naam soek sy my cel nommer, alhoewel sy dit soms verkeers skryf tel sy en besef daar moet tien syfers in die cel nommer wees. Prys die Here vir al die vordering. Ek wil graat weet wat kan ons doen om haar brein te stimuleer en haar te help met haar spraak. Kan ons aangaan met wat ons doen met die journal en is daar hoop dat sy sal regkom?

Posted on 27 August 2011

Comment by Elizabeth Maria Ramfopoulos

I am so glad that I came uppon this site and to read all the messages. It gives me great hope.. My sister is currently in hospital with the Herper type1 viral meningitis and also have memory and speech loss. She felt ill on Vryday 1

Posted on 25 August 2011

Comment by Katie Farr

Hello, I had meningitis and encephalitis in 1987 and then menigitis in 92 and then again last month, July 2011. Each time it was viral and each time I spent a week in the hospital. Today, finding these posts...this is the first time it even crossed my mind my crappy memory might be from this.(I'm 42) It's really upsetting sometimes when I can't remember things. I'm on Facebook and have hurt many people who I went to high school with cause I just...I got nothing. I've come to realize I have huge gaps in my memories. It makes me sad. I care for people in late stage Dementia and/or Alzhiemer's for a living so you can imaging how my own memory loss worries me. I'm so thankful to have run accross this page. Thank you all and be well.

Posted on 25 July 2011

Comment by Krista Acosta

I had meningitis in late 2009. I faced numerous seizures and months in the hospital which of it I do not remember. I was released spring 2010 to my family. From what they told me I was at times very emotional and out of it. It wasn't until my summer of 2010 when my memory had started to register again. My doctor asked me what I have been doing because I should not be as I am. He told me I should still be under hospital care ten years plus and out of it. I told him ever since August 14, 2010 my memory has been coming back to me. August 14 is my birthday and I received everyone's gifts, their prayers. Since then I've been reading my bible devotional, going to church and bible study. I am still effected by what happened to me, but I've learned to

Trust in the Lord with all your heart and lean not on your
own understanding; in all your ways acknowledge him and he
will make your paths straight. Proverbs 3:5-6

God bless

Posted on 12 July 2011

Comment by melissa king

I had menengitis a couple of months ago and started noticing memory loss a few weeks ago, along with the pain and clumbsiness that others describe. I'm going to the dr. this week and I will update this with any new information.

Posted on 05 July 2011

Comment by Orville S Swift

I just found website two or three days ago its nice to know what I'am not the only one having the problems like memory ,clumsy headaches forgetfulness i blame it on my spinal stenosis i never thought of my spinal meingitis being the reason i had spinal meingitis as a baby i all most dont make it iam glad i found this site reading your real life stories i don't feel alone thank you for listen

Posted on 20 May 2011

Comment by Katy Clark

When i was 20 i was diagnosed with viral meningitis and stayed in hospital for 5 days. My lumbar puncture pain lasted about 18months and i often found it difficult to kneel and bend. I have now started to realise my memory is getting a lot worse and i am now starting to forget simple things. The names of people i have worked for, for years. My friends surnames and often names of food that i have eaten everyday all my life. I can tell its getting worse i often get mixed up when speaking and ill try again to get it out and i still wont be able to put together a simple sentance. If i mention it to anyone i feel they dont really seem to care and im so glad i found this group so i know im not the only one feeling like this

Posted on 17 May 2011

Comment by Cheryl

Hi. In March 2007 my mother got bacterial meningitis. In August 2008, I got viral meningitis. My mother has several other medical conditions, but it appears she has recovered from this okay.

For me, I still suffer from headaches (nothing as severe as when I had the virus...but if I don't take Exedrine Migraine when it starts, I get nauseous and it's very difficult to get it to calm down.

Also, along with others, I have some bad memory issues. I was told that whatever improvement I got from the condition would happen within the year after. Whatever didn't improve in that first year would be life-long.

My memory is still a major issue for me, along with the headaches and some mild confusion. I also have some joint pain from it.

Has anyone taken anything conventional or holistic to help with this?

So glad to have stumbled onto this site. I was feeling so alone and expect no understanding from others as I realized they just don't get it.

Posted on 06 May 2011

Comment by mark gilles

i have just got out of hospital i was told they thought i had viral menrngitis my long term memory is gone the mri and tests all came back normal but i cant remember anything before getting sick i am glad i found this it is hard to explain to people how i feel

Posted on 28 March 2011

Comment by Shirley

I've had 3 diagnosed bouts of viral meningitis over a 7 year period, the first being when I was 5 months pregnant with my second child and the last about 4 years ago. I say about 4 years ago because I don't remember exactly. Each time I was admitted to hospital for around a week. After each time i noticed abnormalities in my memory. The first time, standing at a supermarket counter, completely forgetting how to sign my signature (I'd been married 8 years) and when I tried, I signed in my maiden name (which was totally different). From that day forward, I had to change my signature to mirror my maiden name style as I couldn't even get the flow of my married signature. So crazy I've never told anyone, not my husband, family or friends. Other things include not remembering the events of my second son's birth. Only when discussing it I pick up from my husband and mum what actually happened that day and snippets come back to me. I have found over the years I have become quite the actor during conversations pretending to know what others are talking about when it comes to events I should remember. I also find that I misplace things and can't remember for the life of me where I put it. Although I manage to function quite normally working part time as a payroll officer, I do struggle some days with this and have always known, contrary to what the doctors have said, that my memory loss had something to do with meningitis. It is such a relief to know I am not alone.

Posted on 03 March 2011

Comment by Dana Staus

Hi, In 2005, got really sick with flu like symptoms, high fever, dehydrated, stiff neck, and horrible headaches. could not drive myself to doctor, my mom took me. The doctor sent me to the hospital to be admitted for dehydration and a spinal tap to check for meninitis and encephalitis. I was in the hospital for a week, and the tests never showed up to be meningitis or encephalitis. Doctor said he still thought, I had a viral that would not show up thru lab results. Finally went home with stiff neck and headache not near like they were. Stayed home another week, then went back to work and could not remember simple things and I had been a dental assistant for over 20 years. After my dentist would tell me I would say thats right, and remembered. Went back to my family doctor then he referred me to a specialist, I had already had a CT scan done in the hospital to check for a tumor, nothing showed up. The specialist sent me for an MRI and it showed nothing, treated me for migrianes. He said possibe lyme disease from a tick bite but to know for sure alot of expensive blood tests. Quit my jobs, cause at the time had 2, plus 3 children and a husband that farm. I don't remember alot from before either, I think back on school days, really don't remember a whole lot. I think back on my children don't remember alot of stuff, my husband gets mad and thinks I just choose not to remember. Anyway I have been recently having I guess migraine headaches, I get nausea, cannot stand noise or light. The pain is behind my right eye socket, my teeth will hurt upper and lower and the right side, and my head will be pulsating. I have all kinds of migriane meds. and they usually don't help. I also when I had my second child in 1997, I had a spinal block, and had to have a blood patch done because I lost all my spinal fluid, to this day I still have pain in my spine from all those shots. Do you think all these symtoms could be related? I am starting to have lots of headaches again, don't know where to turn never found out before what I truly had.

Posted on 28 February 2011

Comment by lisa lilley

Hi all, I am 37 and when I was 2 I had viral meningitis, I was in hospital 3 weeks and had three lumba punches*... For the last 20 years I have had a lot of cognitive issues i.e behaviour, communication, understanding, memorie the list goes on... I have also had a lot of minor health probelms i.e anemia and joint pain.. Recently I visited the dr whilst having an attack of fatigue, which i suffer with on regular occasions which is affecting my marriage and my job...... Tests were done and they found that I had high blood pressure. I was sweaty and clammy, breathless.... Realy felt awful.. I am being checked for probelms with my adrenal gland... I wonder if the probelms I have had throughout my life is related to the meningitis. I have got to have a mri scan soon and hope that they will find an issue because at least this will answer the questions I have had for many years.. I also forgot to say I have suufered with depression on and off for most of my adult life... Im not quite sure why I wrote all this on here i think i am at a point where if anyone can answer my probelms then im willing to tell.... I hope all on here have a happy nice life and im hopeing i will too :-) lisa

Posted on 23 February 2011

Comment by Jane Mukandi

I wish to thank all those who are working so hard to research this dreadful disease in order to find a solution in the Meningitis Research Centre. I also share the same sentiments to those who suffered this disease and parents who have children who have had this disease's experience and offer my greatest sympathy to those relatives with people who did not make it up to this day due to the meningitis disease. My son suffered monochocal meningitis in July 2007 although he was vaccinated against it in September 2006 which puzzled doctors. My son was in coma for 7 days by then he was 2 years old, he could not talk, walk or eat and was in intensive care unit hospitalised for 2 weeks under high dependance care later transferred to isolation room. He had to learn to walk as he was referred to a physiotherapist whom I am grateful to have helped him to regain his strength. He just started vomiting and high temperatures, was rushed to hospital and we waited for 4 hours before he was attended to, I am glad that one of the doctors suggested for a lumbar punch, head scan also temperatures that reflected to be 39%c made him think this was none other than meningitis, as the doctors rushed results it was detected the following day and my son was straight away put on drugs to fight it, Its a miracle that he survived and I thank God through Doctors and Nurses who performed an amazing and excellent work in battling this disease for my son to be here today. I fully understand what parents went through with children who were hospitalised with this disease and the ones who suffered this disease and its afer effects. Although my son fully recovered he has problem at school as he is now 5 years old in year 1, slow learning, problems with his legs he is always complaining they are aching we have consulted doctors who are still to find the solution, he can be hyper or very quiet and complain with stomach pains apart from this he is a perfect child although if he had not suffered this he could be a very intelligent child at school with his performance rated high but above all I thank the almighty God for him to be with us and each day I see God when I set my eyes on him and love him to bits.

Posted on 21 February 2011

Comment by Giovanni Karl Fredrick Littardi

I fell ill with Bacterial Meningitis in February 2010, being rushed to hospital and put into an induced coma. This saved my life, of course.
I have now been in recovery for more than a year. Residual side-effects for me include:

* Severe short- to medium-term memory problems.
* Severe loss of sight in the right eye.
* Tiredness and severe problems with concentration.

Medics tell me my recovery is ahead of the curve, which is nice. I have, however, had to change my life post-Meningitis, significantly.

I am husband to a wonderful wife, father to a remarkable five-year-old son. My ability to serve them as I once could is greatly diminished at this time. I am clawing back my abilities with the aid of sheer belligerence. I cannot suggest anything more than that to anyone in a similar situation; but that is all it takes (and a stubborn sense of self-belief).

My blindness (right eye) means that my driving license has been revoked and, after several attempts to return to full-time working, I have still to succeed in fulfilling a role as I would have easily before Meningitis.

I am self-employed and love my work. So, aside from all the other problems, I most of all want to work again as I did before. I am getting there though and can only say to others like me:

Never, ever stop trying; even when you are reduced to tears of abject frustration.

You can make it back, but you have to keep moving and believe that it's worth the effort (which, of course, it is).

Wishing everyone of you the very best,

Karl Littardi

Posted on 09 February 2011

Comment by mark freeman

No way, a reason for my poor menory. I just came across a Childs Heath Cener baby check up book. Weight and Height notes from when I was 22mos monday april 8 1957 swollen glads, sore in mouth and ear infection (Bicillian). tuesday spots on legs from shoe tops up, some on butt checks, arms sollen. Thuresday, vomiting, cough, bloody discharge from nose, Friday bumps on feet Monday the 15th arms swollen.
elex of paradenziopatio adrendelin
Punpura spelling might be off hard to read such small writting. My younger brother was born on Monday the 15th so they may have been to busy with him to see the trouble I had with my menory. School was tought, Spelling
I still have a have trouble (like that last sentance) So do I belong here?

Posted on 07 February 2011

Comment by Michael Schor

I'm both happy and sad I found this site. Sad because of what everyone is going through but happy to know that I'm not just paranoid. I'm 43 now. I was admitted to the hospital and diagnosed with bacterial spinal meningitis when I was 10 (in fact, I was rushed to the hospital in the middle of my 10th birthday party). Over the years, I've lost long term memory but recently I've had many other memory issues that are getting worse. Rhymes and melodies I use during storytime (I'm a childrens' librarian) will sometimes escape me even though I've been practicing and performing them for a few years. I've tried Ginkgo Biloba and increasing Omega-3 foods and so far nothing. I hope something can be done soon.

Posted on 04 February 2011

Comment by Keri Wilson

I am 34 years old and had meningitis in Aug of 2010 I thought I was the only one going through these issues. I am sorry to heard that so many others are having to deal with this too, but at the same time relieved that it's not just me!!! Every time I go to my doctor nothing ever comes back "abnormal" my MRI's look normal and even looked normal when I was in the hospital, go figure on that one. I'm just frustrated because no one understands, my family, my work, no body. Just glad i'm not ALONE.

Posted on 12 January 2011

Comment by Michele Crenshaw

Oh my gosh, I'm so glad to have stumbled on this, just to know I'm not alone. I suffered from Meningitis in 2004. I still struggle with short term memory loss, migraines and other cognitive functions. Stress and barometric pressure make it worse. Is there ANY help? As I get older it sure isn't getting any better!!

Posted on 05 January 2011

Comment by joanne duckworth

i had viral meningitis and encephalitis in march 2009, i collapsed in my local chemist after buy painkillers for my headaches, i went numb on my right side and couldn't speak, ended up in hospital for 3 mths have loads of diff meds and spinal taps, i went partial blind in both eyes, but lucky enough for it to right it self and i now have to wear glasses, i was a yes away from saying i needed to have brain surgery for a tap in my head , i was lucky to be on meds that help it and didn't need surgery,, today im still having head aches, very bad some times, nothing i take helps it, ive been back to my docs today and he's referring me back to the hospital for tests, i have terrible memory loss i don't remember being hospital for 7 wks, i have trouble remembering passwords, conversations, films i've watch plus some of my life before i had it. its so getting me down and frustrating, i am tired all the time, my eyes hurt, feel like crap all the time. i hope they can sort me out.

Posted on 29 December 2010

Comment by marilyn uithaler

i had meningitis in1997 and stayed in hospital for a week,after that it's hard to remember anything,got headaches like hell,have trouble with my tummy,cant even eat right.its good to know i'm not alone,it's hard to pretend that there is no problem.i want to study but its hard.at least i know i'm not alone.

Posted on 26 December 2010

Comment by Jeanette Zink

I was diagnosed with spinal meningitis and encephalitis in 1976. I was 12 years old. I was hospitalized for 5 months. I became paralyzed and had to learn how to walk all over again. I have no feeling of temperature from waist down since. (I can't tell the difference of the pain - if it's ice cold or raging hot - it just hurts) If I dip my foot in a pool or a bath I can't tell if its cold or just right to get into. I have 30 percent hearing in my left ear. My memory before the age of 12 is very limited. I have suffered from short term memory since and have difficulty in retaining information. I have to write so much down if I want to remember it. I never grew after (only 4'10) and my voice never developed. My voice sounds like a child. To this day I still never tipped the scale over 100 lbs. I was told I had a third disease and that is what made me paralyzed but it was unknown. The back of my neck hurts if it is touched. Before I was 12 my mom always said I was her sunshine girl. (She had six girls) When I came out I was a different person. . . . . . . .

Posted on 20 December 2010

Comment by Theresa Nonies

I myself have had meningitus about 12 years ago when i was about 19 years old, and till this day i can't remember a lot of my high school days and i have such a terrible memory that i am affraid, I almost feel crazy. My husband felt that since i could not remember a lot of my past i must be not wanting to tell him things but i truly could not remember to save my life, it actually takes something or someone to jog my memory for me to put things together that had happened in my life before i got sick. NOW i can't remember simple conversation. I feel crazy.

Posted on 10 December 2010

Comment by lisa cook

im so glad ive found this site !! 2 years ago aged 42 i had bacterial menengitis ,i was in isolation for 2 weeks it was the worst time of my life !! ive had trouble my memory and headaches ever since !!!!

Posted on 30 November 2010

Comment by tracey howe

I had viral meningitis ten years ago. I was in hopsital for ten days and experienced headaches for months afterwards and I still now in periods of stress and tiredness experience very similar headaches. When I saw my consultant after leaving hospital for my follow up appointment I mentioned to him about my memory problems and was told "you're not the only one it happens to us all, I have trouble remembering things too" so basically my concerns were dismissed. I did not think any more about it but the memory problems continued and the last couple of years it has become worse. Only in the last couple of months have I discovered that many more people who have had meningitis have this problem.My memory used to be fantastic but now when I try and think of things I have forgotten it's really painful and very frustrating. It's also hard to get people to believe you. Even my partner. Just to talk to others in the same situation will help.

Posted on 29 November 2010

Comment by Alison Deuchars

@ LaQuetta Walker. I had viral meningitis 9 years ago (aged 34) and have memory problems too, they have improved a bit over the years but can get quite bad when I'm tired. I took Omega 3 fish oil supplements which I think helped as it was noticeable if I ran out and didn't take any for several days.
I also understand your feelings of frustration about not being believed - you can't prove it and it's not a visible thing.
I get annoyed about people dismissing VM as everything I see about it says 'full recovery within a few weeks' which in my experience is not true, it may be for some people but I think it depends on the severity of the initial illness.
Hope everyone that's commented learns to cope with the after effects of this terrible disease. 9 years on and I'm a lot better and leading a fairly full life with only occasional relapses.

Posted on 29 November 2010

Comment by Janet Foy

My youngest son, now 27, had HIB Menigitis as a young baby. Thankfully he recovered. However, as he progressed through primary school, the gap in attainment between him and his peers grew. He had problems with short term memory,especially. Could not remember simple things like times tables, simple rules for Maths, instructions etc. Writing was a chore and a problem for him.
he knew which letters to use but often in the wrong order. Fortunately, as a primary school teacher myself, I was able to identify that he had some special educational needs. The problem was trying to get the authorities to regognise his needs!! It took me almost 3 years to obtain extra support for him in school and I would encourage any parent to push and keep pushing until a child's needs are recognise and supported. Get back up reports from any specialists that you can and keep trying. It worked eventually for me and my son.
He left secondary school with 7 GCSE's [which I never dreamed he would pass a few years before]. He went to college and gained a great Child Care qualification. Now he is seriously thinking of going on to become a teacher. I'm very proud of him and his achievements.
He was left with relatively minor problems and succeeded in overcoming most of them. He is still forgetful and probably always will be but he's a great guy.
I thank God he's here and once again I thank MRF for the support they gave me all those years ago.

Posted on 29 November 2010

Comment by LaQuetta Walker

I just posted a comment but I wanted to add that I am 33 years old and was 31 when I had meningitis. I also have problems with clumsiness and being off balance when walking. I have been having problems with extreme joint pain but I put it off as lack of exercise. However, even with exercise I am aching more often than not. I don't want to continue to live like this. I just want people to believe me.

Posted on 29 November 2010

Comment by leanne beavers

I had meningitis when I was 7 mths old. My parents tell me I was practically dead. I was yellow, very weak, and didn't respond much. Miraculously I recovered after a month. My mom has told me she seen some change in my habits after. I am almost 24 now and I feel like some things that happen to me now are related to this. I use to get sick a lot and still somewhat do. I'm ALWAYS forgetting things. I have really bad knees with no reason other than this one for it. I wish I knew if meningitis was the real cause. But I'm glad to see that I'm not alone on this issue.

Posted on 29 November 2010

Comment by Libby Henderson

I had viral meningitis a few months ago and I am also having memory problems. Came on this site to see others problems and mine are very similar. I am 42 and had a rash and "heavy head" feeling in June and was told by doctor it was sinus infection. After going back to the doctor 3 more times and to the ER once, finally had a seizure when fever got to 103 and was put in the hospital where spinal tap was done. I don't remember about 4 days there. I am like others here, always told I had great memory and now can't remember things. For example, had 3 things on my shopping list, left it at home, took me 15 minutes to rememer what they were. I have never had to make lists before but now I am going to start. I am a medical transcriptionist so have tried to warn my employers there may be some mishaps! Just thankful I am not any worse.

Posted on 23 November 2010

Comment by LaQuetta Walker

I was diagnosed with meningitis in May 2008. Before I had meningitis I was known for my good memory to help others remember things. I could read something and remember it for years. Now I have a hard time putting my thoughts into words and remembering things. Even simple things I forget and some family and friends think I am being dishonest about what is going on. My fiancee' made the comment, "well this is the first time I've heard of your so called memory loss" and that really hurt my feelings. It is very difficult to live with this especially being the mother of a 7-year-old active son. I am glad to know I am not the only one dealing with this. I was very disheartened when the meningitis foundation did not respond to this question when I was released from the hospital with meningitis in 2008. No one had answers for me or understood what I was going through. I hope we can figure out some solutions to this issue or atleast find some comfort in living with memory loss.

Posted on 19 November 2010

Comment by Luis López

Hi everybody. I am 54 and I had meningitis septicaemia 14 years ago. I am an active University teacher and since then I feel it is difficult to me to remember not only faces and names of students, but sometimes colleages names as well. Even worse, every year I have to refresh my knowledge on the matter I teach because I forget a lot of I knew. It is quite difficult for me to remember a person who has been introduced to me recently, or a situation happened 4 or 5 months ago. It is the same for concentration: I have to do a great effort to be concentrated in a task for more than an hour.
Until now, I thought it was a matter of aging, and nobody has paid attention to my comments about this perception. I can see other people have the same problem.

Posted on 08 November 2010

Comment by Carol Gail Hadley

I had meningitis at around 14 months of age. When I was going to school I only did well in exams if I studied extensively the night before an exam.
I have always (as far as I can remember) had difficulty remembering names. Eg a friend of mine can remember names and details of snippets from anyone who is famous eg movie stars. I cannot remember much of these things no matter how many times I read about them.
I am appalling at taking in directions having always needed to write them down. Thank heavens for the GPS.
Even when I was younger, whenever I learned something new in my job, i would write down what I needed to know in order to carry out what I had been instructed, otherwise I would forget what I was instructed to do.
Nothing is changed, if I were to do such things today I would still need to write the details down.
I am now 66 years of age and worry about my memory.
I have a sister who is going downhill fast with Alzheimer's and I worry whether my memory problems are due to Meningitis as a baby or whether I in fact am heading towards Alzheimers.
I forget almost anythying that I do not write down.
I have great difficulty remembering names.
If I see a movie or read a book - even though I might enjoy the movie or book immensely - I could not then relate what the story was.
Mind you I never have been able to - it is not just a new thing.
When I am cooking, I have to keep reading over and over again the instructions of how to make even the simplest recipe, or I will leave something out of the recipe. I have needed to do this for quite a lot of years.
Is my story consistent with those who had Meningitis as a baby?

Posted on 15 October 2010

Comment by john dunford

Im 45 had bacterial at 14, it was like someone ripped my brain out and it went back with bits missing. I lost a lot of memory but could remember been 2 or even before ! Had severe depression, cupple of suicide attempts. My joint hurt so bad lower leg feet and knee in constant pain. Ive had behaviour promblems since, suffered with intermittent hearing loss and headaches most days since. I have recently been for an MRI (the first one) doctor tried talking me out of it but was keen to offer more drugs for headaches. He said what difference will it make if it shows anything ! Just got a letter today there is a "small abnormality" get to see it next month. To me its like taking your car into a garage because its loosing oil and they talk you out of investigating the problem saying its best to keep topping it up.

Posted on 28 September 2010

Comment by ronny prestol

i got meningittis at age 26 and meningittis is a fetal desease that will destroy your life becouse your body will never function properly extreame head aches brain pain and joint pain anger and memory loss and even light can bother your eyes causing head aches or eyes pains so eating cold food or drinking a beverage and not being sure if a fly landed on it can mean the difference between life and deaf am a engeener in eletronics and i cant even go to work due to pains and sickness

Posted on 21 September 2010

Comment by David Bailey

I am also a survivor of Bacterial Meningitis Age 8 1960 Middletown, NY. I was pronouced dead at one point and recieved last rights, shortly after I revived surprising everyone including the Doctor and Priest. When I awoke I had no memory of people around me or of my past. I had to be introduced to my Mother and other relitives. Still today I have no memory of my early days and as other here have problems finding words during conversations.

Posted on 14 September 2010

Comment by Belinda Buice

I'm sorry for everones problems, but glad to see that others have problems. I was 10 months old when I had bacterial meningitis. The doctor said there was nothing else he could do, it was in gods hands. My dad was in overseas and the red cross got him home because of my condition. I am now 46 years old and have several problems, I tell my doctors about this and I am told that it has nothing to do with my problems now. I can't get them to see that my doctor told my parents that I may have poblems later in life. I don't know where to turn.

Posted on 13 September 2010

Comment by katie macleod

Comment by nicola balfour
I to have been told on numerous occassions by my doctor in the last couple of months that meningitis does not have side effects and now reading all these comments made by other people that have had it i now know there is.

Posted on 13 September 2010

Comment by katie macleod

Hi I had meningitis septicaemia in October 2009. It was the worst experience of my life and 11 months on I'm still experiencing symptoms my hair is falling out really badly where Ive got bold patches coming up its falling out everywhere Ive even had to have my hair cut short to see if it helps with the growth but nothings changed, i have really bad memory loss a lack of concentration, And suffer really badly with headaches and migraines. May have to go back to the doctors maybe go for more tests MRI,CT scans which i had numerous amounts whilst in hospital. I would also like to add that i have been having some sort of problem when speaking whilst holding a conversation with friends and family i have noticed that i know what im going to say when in a conversation but for some reason sometimes something totally different would come out.

Posted on 13 September 2010

Comment by nicola balfour

I had meningococcal meningitis when i was 14 i was very ill doctors at the time only gave me two hours to live, my family doctor and my mum safed my life, iam 31 now i suffer from memory loss,struggle to hold a conversation, depression,sore heads,pains in my joints the list of problems go on and on i find it hard to emotionally to connect to others, like keeping a partner, i went to my doctors about the memory loss and they told me that it wasent the meningitis that would be the problem, i was thinking with all the problems i have i was going bad intill i found this sight.

Posted on 19 August 2010

Comment by Samruddhi Subhash Nalavade

I suffered from meningitis when I was of 10 days. I was hospitalised and was constantly under medical supervision. My case was worst. Doctor Tamhane situated at Thane, Mumbai was giving me treatment. One fine day by Gods grace and by gods miracle I suddenly got completely cured. Even Dr.Tamhane admitted that I got cured just by gods grace. He did not take any credit to himself. Finally, he gave a good surprise to my parents who had lost their hope completely. But still today I do have some amount of memory loss. Due to this I was not at all good at my studies. I used to secure very less percentage. I found difficult to cope with the increasing competition. That was my biggest drawback. But today I am a MBA in the fild of marketing and Human Resource and want to secure a great career in the future. Thank You for allowing to sharing my thoughts.

Posted on 10 August 2010

Comment by Kathy Myers

I was 4 years old when i had neisseria meningitidis, then 4 days later developed herpes zoster pothalmicus, the trama never ended, I also have memory loss, depression, migranes, joint pain, the list goes on and on, im 39 now, 5 years into a new marriage trying to understand myself and why im the way I am. Its hard to hold a job, I get serverly depressed, angry, and qestion so many things as to why this happend. I have been diagnosed ,(cultured) 8 times now with shingles, yep 8 they say you can only get it 2 and thats rare, so tell me they say shingles can casue meningitidis tho it was the other way around for me.

Posted on 08 August 2010

Comment by Lynn

I have had 7 episodes of viral meningitis since 1984 and have encountered memory loss following my recovery. With each episode I have become increasingly aware of the memory difficulties and it manifests itself in a word finding difficulty when talking...at times it's a real struggle to hold a conherant conversation. It's only since coming on to this website that I have discovered that the effects are not particular to me but encountered by others too...though it seems to be those who have suffered bacterial meningitis that are more frequent contributors regarding memory loss. My memory/word finding difficulty does recover over time. Has anyone else experienced a similar effect?

Posted on 19 July 2010

Comment by Shirley Gieron

Meningitis & septicaemia, can be life changing. Your comments are heartbreaking to hear. I speak with lots of people about their after-effects & support is available through MRF. Please call freefone 080 8800 3344(UK) or email helpline@meningitis.org. We want to help!


Shirley Gieron
MRF Head of Helpline and Membership

Posted on 17 July 2010

Comment by aya bassam

i had bactrerial meningitis at 21 years old before 2 years..i went n a coma for a month.am back in college. but am failing at it.. am severly deppressed.. i've givin up hope...i get lots of sucidal thought.... help please.. am on the edge of killing myself...

Posted on 17 July 2010

Comment by parent of kane

My son got viral meningitis at only 3 days old,he was very ill and was in hospital for 4 weeks. he,s now 7 and he now has lots of problems with his memory,and we have been told that he will need to carry a notepad around and put things in a diary when he,s older to jog his memory. He can also be very clumsy and it wasnt until we looked on here that we realised why he has these problems.

Posted on 14 July 2010

Comment by Andrew Atkinson

My brother contacted Bacterial Meningitis and Septacemia and was in intensive care for a week, in an induced Coma, prior to awaking and thereafter moving into an isolation ward.
His recovery has been nothing short of miraculous, thanks indeed to the Doctors and Nurses who cared for him.
I write this to give hope to those who suffer from getting the disease, or any members of their families, that there is a positive ending.
Unable to talk, Memory loss, eat or walk, use to the wc. All these have now returned and he is back home after a near 3 weeks' hospital stay.

Posted on 12 July 2010

Comment by Valerie L. zarate

meningitis survivor and septcemia despreratelyneed someonetorelateto.iwas inthe ERfortwo trips by ambulance tohospital. wasfighting throwingupunabletostand urinating defacating on mysely completely disoriented was called drug ADDICT PSYCHOTIC ETC. LOST 48 HOUR OF PRECIOUSTIME. HOSPITAL SENT ME HOME ON BOTH AND TOLD ME NOTHING COULD BE DONE . HELP PKEASE!

Posted on 01 July 2010

Comment by alex sherlock

I had bacterial meningitis 10 years ago this march. I was in a comma for 6 weeks where I had kidney and liver failure, my heart stopped twice and I lost 4 stone in weight. After coming out off the comma it took me over 2 years to get my full health back to normal. This was down to my immune system being very low. As a result I had glandular fever and tonsillitis on and off for 18 months. At this point I had moved 35 miles away and had a new GP. I struggled running my own business for the next 3 years then folded the company as I couldn’t cope any more. I then worked for 3 different companies. It was only when I worked for some one else that I realised how bad my memory had been affected. I would do a quote for some one and by the time I walked to the front of the house I could have forgotten 90% of what I had talked to the customer about. As well as short term memory problems I have about 8 years of my life I have very little memory of. The 1st two years I lived in London my GP denied that I had ever had meningitis. I went and saw my GP and explained everything I was given some pills and told to come back in 3 weeks. When I looked on the internet to see if the pills had any side affects I found out I had been given anti depressant tablets.
So I went back with my wife and was told that there was no link between my memory problems and meningitis yet my GP has refused to let me have any type of scan.
By accident in 2009 I found the meningitis web site. After contacting them, I was assessed by one of there staff how confirmed that my memory problems are down to meningitis. I had art therapy paid by the meningitis trust. The meningitis trust are the only ones that have helped me until now. I feel that I have been let down the NHS for no after care and feel disgusted by the way I have been treated my GP in London. My old GP “ the one I had when I had meningitis” has told several members of my family that I will always have memory problems but is no longer able to help me as I am not his patient any more.
I changed GP surgery in February this year and now have an appointment with the neurology department with a hospital in London.
Hopefully soon I will have some answers.

Posted on 20 June 2010

Comment by Tia ser

It's been 5 years since I had bacterial meningitis, I was hostipalized for almost 2 weeks and had to go back everyday for a month for treatments of anti-biotics, I have no memory at all of my whole time in the hostipal
it took me a couple months to recover back to normal, probably the worst time of my life, I had hard time holding down any food or water and lost a lot of weight, very hard time trying to sleep I had the cold sweats very bad, and had a hard time staying still, I would constantly move my legs unwillingly, and my body would feel like I was having small seizures, I am 24 now, all symptoms went away except I still get very bad headaches and still have some problems with my musules. Is restless leg syndrome real? Cause ever since then my legs feel like I can't stop moving them when I'm trying to stay still, mostly right when I'm trying to sleep! Anyone else have these symptoms?

Posted on 16 June 2010

Comment by Zoe Jeanes

I had Meningoccocal Septicemia 5 years ago and now suffer with memory loss. I can be in the middle of a conversation and completely forget a word. It's like it has fallen out of my head. As already mentioned by someone else, I too don't remember much of my life before and when I do it is snippets. I get very frustrated with it, but I consider myself also very lucky!

Posted on 15 June 2010

Comment by Sharon Goldie

Until I read about others having memory loss, I thought not remembering anything of my whole childhood, and later, was just me. I had meningitis (not sure which) in 1965 when I was 3. I since lost my hearing in one ear (nerve deafness) and have balance problems. Does anyone else have emotional problems and not being able to emotionally connect to others, or finding they start to emotionally disconnect to parents/spouses/children?

Posted on 02 April 2010

Comment by Amy Scioli

memory loss, thank heavens for understanding the reason for it. I had bacterial meningitis 3 years ago at age 33, with 3 small children at home. After surviving the disease, i figured my inablility to put thoughts together and remember simple things was because i was overwhelmed with the kids. Now that my youngest is 4 and becomming more independent, Ive learned that the memory loss and such is directly caused by the disease. I too do not have strong feelings of remberance of my life before, and sadly, I dont remember much of my youngest childs first few years. The best way I deal with this is by being easier on myself and letting everyone around me understand they cant be so demanding of me. When driving and at a light, each time i say 'green is for go, red is for stop'...i don't trust my natural abilities anymore. I no longer work in a stressful environment..the kids, gardening, and working with animals is my life. I just can't manage a fast pace anymore. I do find though that when i go for a jog, it does help the fog and cobwebs in my head:)

Posted on 26 February 2010

Comment by Linda Evans

i had Bacterial Meningitis 4 years ago,, aged 47. My memory before was excellent, but now short term memory can be very shaky, so have made sure my work colleagues know and I write everything down as much as possible. Also find concentrating diificult, gone are my days of curling up to read for for an afternoon. Also still get days of extreme tiredness, but consider myself very lucky .

Posted on 26 February 2010

Comment by Denise Waterton

I contracted meninniccoal septaceamia almost 3 years ago, aged 54. After 2 weeks on a life support in ITU I spent a further 6 weeks in hospital learning to walk etc. again. I was given a drug called xigris has anyone else? I am now suffereing from breathlessness due to my lung not being able to get enough air in to inflate it has anyone else? I also suffer from hot sweats now again has this happened to anyone? I also have CKD stage 3 now. Life is so different. I was fit and healthy (trekked muntains in Peru for Breakthrough Breast Cancer) now I'm constantly tired.

Posted on 26 February 2010

Comment by Sarah Brewer

I have had viral meningitis 4 times (each time more severe) and have suffered lack of concentration, difficulty in retention of information and muddled speech but the doctors have put it down to depression caused by the meningitis. Anti-depressants have helped but not completely. Has this happened to anyone else ?

Posted on 23 February 2010

Comment by melinda juarez

one of my coworkers and friends got meningitis and shortly after he completely lost his mind. now in a hospital because of his inability to think well we are wondering if anyone else hs heard of this and what happened to him. any help will be appreciated.

Posted on 22 February 2010

Comment by Mickie Prophet

Lisa, I noticed you said about a change to your metabolism, after my husband had Meningitis his metabolism changed hugely! Is this a common thing to happen to people after having Meningitis?

Posted on 22 February 2010

Comment by Allan bartlett

Well, for years I thought I was the only one. 17 years since I had bacterial meningitis, and memory loss is still a problem. My life before illness I can only remember snippits of, and my ongoing memory is poor at best. My wife recons it's selective memory. Still, don't have balance issues etc, but may go some way to explain why I keep breaking things.
I find the best way to aid my memory is to write down as much as I need to in a work diary, mostly by putting pen to paper helps to commit stuff to mind, and if I can't remember specifics, I can then look them up.

Posted on 22 February 2010

Comment by lisa thompson

I too had very severe memory loss from after having meningitus to the point i hardly remembered any of my life before the meningitus occured, only like little flash backs or de jau vu!!!!!
I have constant problems with balance clumsiness and metabilism rates changed massively! I had meningitus 19 years ago and like you said not much investigation went into these type of symptomns back then. I did undergo a few investigations however nothing ever came back!!!!!

Posted on 22 February 2010

Comment by Shirley Gieron

A number of our Member families describe difficulty with memory & concentration after meningitis & septicaemia, needing to find best ways of managing the situation eg writing lists, step by step instructions etc. It can be difficult for children starting out with their education as this issue may not be apparant until they start school. Teachers need to be aware if this is the case to enable appropriate support where necessary. Young adults have experienced difficulty with exams and may be offered extra help if they have contracted meningitis & septicaemia as adolescents. Our befriending service may be helpful if you need to talk to someone with a similar experience.

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