Meningitis in your words

Nicole Etchegoyen's story

  • Location: England
  • Categories: Bacterial meningitis
  • Age: Adult 25-59
  • Relationship: Self
  • Outcome: Recovery with after effects
  • After effects: Co-ordination problems
Nicole Etchegoyen

The first time I had meningitis I was 13 years old. I had all the classic symptoms starting with a sore throat before I went to bed and then several hours later a severe headache, followed by vomiting for hours. My mom went to work thinking I had the stomach flu, but by the time she came home I had developed red, purplish spots on my entire body. I remember being very out of it. She rushed me to the hospital and after a MRI and spinal tap I was diagnosed with Bacterial Meningitis.

The doctors said I had about 6 hours to live when I was brought in. I had just made the 24 hour window. I spent 3 weeks in hospital and don't remember if I had many issues after. I do remember suffering from migraines until I became pregnant and they went away.

"The first thing I said was you don't need to do that I've had meningitis before there is no way I could get it again, and boy was I wrong."

A year ago this week at the age of 34 I was diagnosed with Viral Meningitis. The symptoms this time were vomiting and severe headache. My husband took me to the hospital and they did a CT scan and blood work. They treated me for the vomiting and sent me home saying I just had a migraine. When I got home I continued to throw up and the pain in my head became unbearable.


After only a few hours of leaving the hospital my husband took me back. A new doctor saw me and wanted to do a spinal tap. The first thing I said was you don't need to do that I've had meningitis before there is no way I could get it again, and boy was I wrong. Soon after the spinal tap I was diagnosed with Viral Meningitis. After spending a week in the hospital I was sent home but came back a week later with severe head pain. I did this three more times spending a total of 30 days in the hospital.


This time the after effects have been horrible. I spent seven months trying to work but just couldn't do it anymore and the last three months I've had to be off work. Since being released I have suffered headaches almost daily, chronic fatigue, memory issues, word finding speech issues, not knowing what I'm doing sometimes and depression.


Honestly, from my experience doctors have zero understanding of the after effects meningitis has on patients. The hardest part of my recovery has been getting doctors to listen to me. I feel doctors are really good treating you when you have meningitis but there is a lack of knowledge and understanding of after effects. I am happy to say I have recently found two doctors who believe me but are unsure what to do. They have recently been sent me to do more tests.


I want to thank for all the work they are doing and for having this forum. I thought I was going crazy until I started reading stories on this site. I'm from the U.S. and I have not found anything like this site. Thank you for all you do and please know all your hard work is appreciated.
With love


APRIL 2016