Has anyone any experince of mollarets & if so how do you deal with it .?

[seanmc68]

My partner was told she had mollarets vm when she was 17 . She,s now 31 & still would take bad bouts of vm 2/3 times a year , she has daily headaches & normally would gt a warning if a bad turn is coming eg -stiff neck , rash etc. They have had her on aciclovir anti viral for number of years and hv recently changed to another anti viral but it just made turns last longer so thve switchd her back . The hospital in belfast doesnt seem to know much about her condition so i was wondering if anyone else has heard of mollarets & knows if any other medication / treatment can be used for it .?

[Jonad724]

In a word yes. I was diagnosed with Mollaret's three years ago and I have two or three attacks a year mostly lasting 24 hours but varying in severity. I had a near fatal attack of VM nearly 11 years ago (I have written a few blog posts here about my experiences) and the Mollaret's started occuring within 12 months of the first attack. As with VM there's not much to touch it except strong painkillers and sleep so strong painkillers which also induce sleep have helped me. Things like Syndol, Paramol, Dihydrocodeine or codeine/paracetamool based tablets basically put me to sleep and I rest it off. I generally have very little recollection of the attacks except that I am apparently convinced I can do things on my own even though at best I can barely stand up.

I am not entirely sure what triggers an attack although severe mental tiredness seems to be one of them. Physical tiredness doesn't seem to trigger them, I did a half ironman triathlon last year and didn't suffer an attack afterwards, in fact the fitter I have become the less frequent the attacks. That said the last attack was so serious my family was on the verge of calling an ambulance apparently.

In my experience if the hospital doesn't know much about Mollaret's nag the crap out of them until they do. You are entitled to treatment even if they haven't heard of the condition and they are required to find out about it in order to do so. If you can speak to someone in Neurology and go from there but in my experience there isn't a cure just ways of managing the attacks by being in control.

I do this by trying to recall what the symptoms were before an attack so I can recognise them again and take painkillers early to ward off an episode. These tend to be difficulty with my balance, finding it hard to string a sentence together but not realising this is the case, speech being slurred and to others the appearance of being drunk even though I don't actually drink alcohol any more due to the effects of post VM.

So my advice would be try to keep a symptoms diary of how you felt before an attack and look for common themes and feelings. Don't try and ignore an attack, its the body saying its had enough and its time to rest. From there it becomes relatively easy to recognise how it feels to be pre-Mollaret's and to take painkillers to either stave off an attack or reduce its severity.

I hope this helps but please feel free to message me directly if I can help further.

[seanmc68 in reply to Jonad724]

Thanks for your reply its my partner emma who has it & shes the type of person who doesnt like to complain so everytime shes in hosp & they ask her how shes feeling she says shes ok when really her head us about to explode.

,she tells me shes just learnt how to cope with it . We had a baby 19 months ago & when she found out she was pregnant her doctor advised her to come off the anti viral.after doin this the bouts seemed to be more severe& 3 months after the child was born she took a real bad attack which then lead to her gettin encephalitis , as a result of this she sufferd short term memory loss & also lost her sense of smell.

The hosp changed her anti viral but it only made the attacks more frequent & last longer even though the pain was slightly better (just a little bit) emma would rather have them further apart so we changed back to aciclovir

We only found out about meningitis trust this week & from me puttin my question on this yesterday i have already had contact from a nurse who is hopefully goin to call & see us to give us some information on how to deal with it better. So might be some light at the end of tunnel lol.

Thanks for your reply & if we get any news ill let you knw .

Sean .

[Vespalover]

Did she have the Zosta Varicella virus? I am guessing if she is an Acyclovir she did.

I had shingles (Zosta Varicella) which went to my meningus thus Viral Meningitus. I too am on a profolatic dose of Acyclovir. I had VM over a year ago and had about 5 bouts in that year but none as bad as the first, although, some worse than others.

I have several friends over here in US who are Dr's and the best advice I got was when one explained to me that we all have the virus still in us after the first event. Mine is the shingles virus. Like any virus it will come back if our immune system is low or if we are stressed either physicall or mentally. When I say mentally I mean either too much emotional stimuli or too much intellectual processing (both very taxing on the brain).

I can track each repeat to either over doing it mentally (too much computer scrolling and dealing with emotional stuff) or too much physically or not listening to being tired.

I now try and take a 30 min nap if I feel tired. I know that is not possible for some with work and children but to fight off a virus you have to really take care of yourself.

I also take daily vitamins and have a massage once a month which really is a boost for the body and for morale.

Like Emma, I used to have a 'stiff upper lip' but realised that all I was doing was stiffing my self by not listening to my body. Try and get her to put a number (1-10) on her headache each day and then you will get an idea of how she is improving and be able to gauge when to back off at certain times. That worked really well as my partner could monitor it for me and notice things I could not.

Good luck Emma and Sean