Mollaret's

[Lensbaby]

Hi, have any of you dealt with VM or Mollaret's that doesn't quite put you in the hospital but makes life extremely difficult? Maybe the HSV2 variety?

Thanks

[Jonad724]

I was diagnosed with Mollaret's in 2010 follow hospitalisation for near fatal VM in 2002. Mollaret's, I think I am right in saying, only follows VM attacks and although I have been very ill with it, Mollaret's has not hospitalised me yet.

I was so frustrated with how it was affecting my life, 2 or 3 attacks a month, I decided to keep a short daily diary with what I ate, how I slept. exercise and how stressed I had been each day. I then tracked this against the MM attacks and it showed that each attack was preceded by a day of high stress. A lot of people said it must be the exercise that was doing it but this just didn't follow the pattern. On days I exercised I rarely had a MM attack but on days when I had been really stressed, when you're a project manager turning round basket case projects it's a fact of life, that's when the symptoms started and progressed quickly.

I have learned to cope with the stress, and thus the MM, by using relaxation techniques, I have a hypnotherapy recording when things get really bad and I have learned to switch off more from work.

I am a volunteer Community Ambassador for Meningitis Now and so if you think I can help please PM me and I will see what I can do. The charity does have a peer support process which I am happy to arrange for you if it would be of use.

Take care, Jonathan

[Justinealexx in reply to Jonad724]

Stress is certainly the key trigger for me too.

[Lensbaby in reply to Jonad724]

Thanks. I was diagnosed with Hsv2 when I was in my mid twenties. Then when I was about 30 I began having terrible episodes of absolute confusion right before I would have an outbreak. I lived alone and I didn't understand what was going on so I would just hide from the world and my job and ride it out. The first couple of times I had no idea what was happening and was too confused to make good decisions like go to the hospital. Had someone seen me I'm sure they would have taken me. After some time these episodes became less severe and just made me miserable. Always, I would get an outbreak shortly after. For the last 20 plus years the outbreaks have become nearly non existent but I just seem to fade into and out of confused periods where my eyes feel like there is pressure behind them, and they feel a bit tired. No stiff neck. But every few years or so it will get really bad for a matter of weeks and I wonder how I'm ever going to make it through it. Then sometimes I go into total remission for a while and my memory and personality are as they should be.

I have been telling doctors this for years and I get the sense they all think I'm nuts. I have been tested for everything under the sun and every test is negative. I haven't though received a lumbar puncture ever though I have asked.

Like you I have tried to find triggers like food allergy's but I can never seem to correlate the "episodes" with any food or behavior, except that I'm a custom home builder so I live in stress.

Does my experience sound anything like yours?

Best

LB

[Jonad724 in reply to Lensbaby]

It does sound like my experience. I had chickenpox at 31, I hadn't had it as a child so when my daughters caught it, so did I. I was really ill with it too, they wanted to hospitalise me but couldn't find an isolation room for me so I was treated as best as was possible at home.

I contracted VM when I was 39 and my neurologist told me that if I had been lucky I would have got shingles or unlucky I would contract VM. I contracted VM with a vengeance.

8 years after the first episode of VM I was finally diagnosed with Mollaret's after 3-4 years of trying to convince the medical profession that I could have it even if it was very rare.

Attacks for me start with tingling in my lips, pain behind my eye and a progressively worsening headache. My neck doesn't go stiff, but it does get very sore and achy. Doctors though universally don't understand viral meningitis and how serious it can be and so if you have to persuade them that you have Mollaret's, when they have said I can't have it due it being so rare, this gives an indication of how much help they are likely to be.

I hope this helps, Jonathan

[Justinealexx]

Hi there. I have had 7 episodes, starting 1995 and most recently last summer. There only one I’ve stayed home for was during COVID.

[Panda48]

I had VM in 1990 and was finally diagnosed with MM in 2010. The attacks have never hospitalised me but they probably should have. I take zovirax and it has made a huge difference. My attacks are down from 8/10 a year to maybe 1/2. It doesn't work for everyone but it does for me.