by Heather Freeman

My Mollarets Meningitis journey started in August 2007. I was feeling terrible, laid up in bed with what I thought was a bad case of the flu.

My general practitioner sent me to a ward in hospital straight away, all I remember is collapsing into the ward and the nursing staff running to help me into a side room. When I woke up I saw a doctor who told me I’d been diagnosed with viral meningitis and I was extremely lucky considering the fact that I had stayed at home for three days without treatment. Thankfully, I went on to recover and my body soon went back to normal—that is until August of 2009.

The only way I can explain how it felt was that it seemed like a HUGE explosion had gone off inside my head! Instant sickness, stiffness to my neck and back, photophobia– I was rushed to the hospital and I was 110% sure I had viral meningitis again! I was told “No, you can’t get meningitis twice! It’s possibly a migraine.”

imageFortunately, my white blood cell count was high and I was kept inpatient and given a lumber puncture. It was the worst, most painful procedure I’ve ever had! I was correct though, I had VM again.

I was puzzled as a doctor came to me and said he had been studying a rare syndrome called Mollarets Meningitis which was a rare form of recurring meningitis triggered by the herpes simplex viruses. I was his first diagnosed patient.

I would recover but I’d have further episodes of MM that would need antiviral treatment.

Fast forward 7 years and I’ve had at least 8 hospital admissions, 11 lumber punctures, countless blood tests, MRIs, CAT scans, and so many different pain meds. I now suffer from regular severe headaches, sickness, photophobia, mood swings, depression, concentration, patience, memory loss, hearing loss, anxiety and twitching down my right side.
Thank you for taking the time to read my MM journey so far. I hope my story can help other patients understand that meningitis is not a one-time illness for all! x

5 thoughts on “When Meningitis Strikes Twice”

  1. Angela L says:

    Sorry to hear of your rare meningitis.It must be a pain in the ass especially the doctors need to do lumbar puncture every time to confirm the diagnosis. In one sense, you are very lucky that doctor was able to make the first diagnosis for this rare disease.Now you know the “monster” you are dealing with and there is treatment for it. Take good care. I t is always frustrating to suffer from a rare disease.

  2. Marsha Quarles says:

    My husband was recently diagnosed with Molaret Meningitis after 5 times diagnosed with viral and bacterial, 8 spinal taps, 4 hospitalization, over the course of 30 years. It has been difficult but glad to finally have an answer

  3. Alyssa Rogers says:

    Thank you so much for sharing your story!! I’m dealing with exactly everything you have described here, and I’m currently on 12 prescriptions plus I supplement with at least 5 different vitamins and also use diuretics for edema. I’ve been misdiagnosed for my entire life (I had meningitis at age 2!) Happy to find an answer, but I’m so sorry for all the pain you have suffered… Stay strong! I’m so grateful for you and this information!

  4. Rich says:

    Anybody experience taste buds not working after viral meningitis?

  5. Dianna Bulisky says:

    Thank you for your information and story in so sorry for all your going through But I’m glad I found your information and stories because I’m so scared because last year I wound up I having Meningitis which caused me to have hearing loss and a stroke…And it affected my right side which now I have right hand and arm and numbness going down into it which I cannot hold anything very long or even turn anything with my han i was 49 when this happened I am now 50 and I’m starting to have symptoms again terrible headache and earache’s and I’m glad I found the information and said you can wind up having Mollerts meningitis

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