Trying to deal with the fear VM has left in me.

[Neiseprice]

Hi, I am new to this but so glad I found this site. I contracted VM in November 2017. Took 3 months, 4 dr visits & ER visit only to be misdiagnosed. Finally found a Nero Dr that knew just what I had. I am getting better. I struggle with skin pain on the back of my neck (feels like a sunburn) and my scalp hurts and I swear the pain moves. . ( I have cut my hair off 3 times because it is so painful to touch) I feel validated reading all your posts. The hardest thing now, besides the fatigue and brain fog, is the fear of it's return. Any ill symptom I experience i immediately have a soul wrenching fear that VM is back to get me ! Terrified .

[Christinedion]

Talk to a neuropsychologist or try post traumatic therapy. It took me a long time to get my confidence back and still sometimes i fear it is back..

[Jonad724]

Hi, I'm 16 years post near fatal VM so I hope my experience helps. VM can be quite traumatic especially when you're not diagnosed immediately not to mention very scary too. Fear of its return is normal but so is taking a long time to recover. Your brain has taken quite a battering and so you will experience strange after effects for some time but keep talking to your doctor. It is possible, but very rare, for VM to recur (it's called aseptic recurring meningitis or Mollaret's after the person who discovered it) and I was diagnosed with it in 2010, 8 years after the first attack. The best advice I can give is adjust what normal means to you, don't compare your life pre and post VM look at it now. Before having VM a fear of getting VM wasn't there but now you have had it you have the associated fear of it happening again but the chances of it recurring so soon after the initial attack are very low. Mollaret's tends to be diagnosed 3 years plus from the first attack but I'm fortunate that I know my Mollaret's attacks are caused by stress so I know to avoid situations where they might trigger an attack. As Christine says talk to a professional about how your feeling as VM can be traumatic and a talking therapy might help. Most of all be kind to yourself and rest as much as you can which will also help the fear. Take care, Jonathan

[morethanks in reply to Jonad724]

Thank you for these comments which are "right on" based on my own experience with Mollaret's. I appreciate your reminder to adjust to a new normal, be kind to yourself and to rest as much as possible. Finding a supportive network such as this one at HealthUnlocked and the Mollaret Meningitis Association support group online has made a huge difference in my ability to cope with my up-ended life. As others share I glean tidbits of info to apply in my situation and to try to educate the doctors/ Physician Assistants, nurses who all seem woefully uninformed re recurrent VM and specifically MM. I am reminded how blessed I am to be as well as I am, and thankful for a loving, caring family.

[Amrita-A]

I have the same fear, particularly as I am certain that my meningitis was caused by herpes.