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Mollaret’s Meningitis

Mollaret’s Meningitis is a rare form of viral meningitis that is recurring.  My first hospitalization with it was in 1998.  I was in my second day of the Sheriff’s academy when I collapsed in the classroom and had to go to the emergency room.  You can read my full meningitis story here.  I was officially diagnosed with recurring viral meningitis in 2009 after being hospitalized for a second major bout with the disease.  At this time we were informed it was recurring viral meningitis caused by herpes simplex virus (HSV) 1.  It wasn’t until I saw my current neurologist that I was told it was actually called Mollaret’s Meningitis.  That allowed me to find great resources online to hear from others that have the same illness.  Listed below are the resources I use:

  • Mollaret’s Meningitis Association – http://www.mollarets.org
    • This is a newly formed nonprofit to support those with Mollaret’s Meningitis and continuing research.
  • Mollaret’s Meningitis Facebook Support Group – https://www.facebook.com/groups/MMSupportGroup/
    • We just started this group recently and are starting to grow our group there and having some great interactions.
  • Mollaret’s Meningitis Support Group – http://mollaretsmeningitus.ning.com/ (Now partnered with Mollaret’s Meningitis Association)
    • This has been a support group for a long time and has a lot of people in it with great resources.
  • Meningitis Now Support Forum – https://healthunlocked.com/meningitisnow
    • Meningitis Now is an organization out of the UK that does a lot to support people affected by meningitis.  They were a huge help to me when I was trying to figure out what this crazy disease was, even though I am from the US.
  • US Department of Health and Human Services, National Institutes of Health, National Center for Advancing Translational Sciences, Genetic and Rare Diseases Information Center – https://rarediseases.info.nih.gov/diseases/10868/mollaret-meningitis
    • This is the official information on Mollaret’s from the US government.

The symptoms of a full-blown viral meningitis attack are:

  • Severe headaches
  • Fever
  • Nausea
  • Vomiting
  • Sensitivity to light and/or sound
  • Malaise
  • Neck rigidity

Rarer symptoms are:

  • Tachycardia
  • Double Vision
  • Hallucinations

Without proper care, symptoms can escalate to:

  • Seizures
  • Coma

With Mollaret’s flare ups, it can be any combination of symptoms, and can last from days to weeks or more.  My flare ups usually start with the neck rigidity and pain and usually last from 2-4 weeks.

meningitis-awareness-ribbon

 

The awareness ribbon color is burgundy.

 

 

If you, or someone you know, have Mollaret’s, or think you might, please check out the resources on the above websites.  And as always, remember:

Life’s Hard; Be Kind

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