Well, I am recovering from my third bout of meningitis. The first I experienced was at the age of 20 and then after a serious length of time (nearly 30 years) I experienced two episodes in the last 2.5 years. It seems likely that I may have Molleret's but am still awaiting a consultation with my local neurology department.
I am interested in communicating with people that have been diagnosed to seek ways to manage this syndrome. I don't want to discuss mis-diagnoses or awful experiences with the medical profession or hospitals. Just want the facts.
Care to contribute?
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jocey1
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Thank you Tiga. Apparently it is extremely rare and there are no clinical trials in relation so the treatment / management so it seems to be all guess work on part of practitioners. Anything you do come across would be gratefully received.
Hi Jocey1, had my first case of vm when I was 18, and had cases 2 and 3 in May and August 2012 at the age of 55. Felt pretty unlucky as you can imagine, twice in 3 months seemed unbelievable and Mollarets was mentioned but they are loathe to diagnose as that at present, it would seem, that they wish to wait for a 4th case before diagnosing. To be honest the hospital and doctors have been pretty poor, Meningitis still seems almost a nuisance to the medical profession, they dont really like it, they even sent me home in the August vm episode this year and said I did not have it. I told them I did and I suggested that I would probably be returning later that day, sure enough it got worse and 12 hours later I was in hospital with drips in either arm and they were all accusing each other of missing it in the morning. The only thing I have now to help me is 400mg of Aciclovir twice a day. This is the anti viral they treated me with whilst I was in hospital (8 days each time this year), its a smaller dose obviously but they said it was worth a try after my wife and I suggested it to them. I do not know if it will stop it coming again, there can be large gaps in between attacks sometimes many years so if I have Mollarets, which of course I don't know yet for sure, then perhaps this may give me an edge and a chance of keeping it away for a while, it makes me feel like I am doing something as its very difficult to get anyone to talk about it in terms of the medical profession. I am not sure what else to say I hope you get some good news from the docs, if you need to ask anything else about what I had feel free as I find some of my memory is selective as it was such a horrible experience as I am sure you are aware.
Thanks for your response Keefy. Sounds very similar to the pattern that I have experienced, i.e. a difference of 30 years +- between the first episode and the latter episodes (I am 51). I wonder if age and decreased immune ability has anything to do with this. I have a very stressful job (social work) and it seems that both of the recent episodes have been precursored by particularly stressful times at work. I understand that memory loss can be a side effect of this condition. I have always experienced a difficulty in remembering past events and wonder if this is a side effect from my original episode. Is this a feature of your life? I am slowly beginning to piece my ill health history together in light of the possibility of Mollaret's - a lot can be explained in terms of extreme fatigue (with no outward reason), irritability and low tolerance of seemingly meaningless activities or conversation, i.e. they take up too much of my limited energy. Other than these episodes, I am usually a very healthy person! Urgh .... Well, I have just received an appointment with neurology for February 2013 .... maybe this will help to shed some light - certainly with prophylaxis. I feel another episode will just finish me off.
Hi Jocey1, no worries will always respond if you need any answers to my case etc, people on here are great and Jonad724 was an invaluable asset to me when I suffered my two attacks this year and for that I will always be grateful to him. The first episode this year in May I really struggled to recover from I was continually tired and listless and although not having huge memory problems I was finding things harder to remember or retain than normal. Then when I got the second attack within 5 days of coming out of hospital, things started to change, my energy level was increasing, I was walking quicker, up and about a lot more, had better energy and also seemed mentally almost back to my old self and have continued to improve. I have had a couple of scares with headaches and queasyness which were my main two symptons before the full blow vm came out with the neck etc, however, thankfully they have not gone on to be full blown vm, so either they were not anything other than bad headaches or perhaps I am learning to cope a little bit like Jonad724 who is an inspiration to us all with his coping mechanisms. I think the key is finding something to work for you, the anti virals give me the confidence to assume that even if it comes back, which being a negative person I assume it will, that I will have that little head start to fight it and perhaps it may not be as bad as the three attacks I have had so far. Not knowing what your neurologist will be like but if anything like mine you will really have to push for any info or suggestions of help/assistance, don't be afraid to do that either we pushed for the anti virals and got them, no way of knowing if they work but its the highlight of my day taking it twice at least I feel like I am doing something. It could be age and stress etc I too have a stressful job with the Police and daily things get pretty hairy and stuff but in all honesty who knows if that has an effect, lesser immune system is a possibility but presumably they did loads of blood test with you (had 3 lots a day for 8 days the second time this year) I would have thought they would have picked up on that, ask that question with your neurologist. The forgetfulness stuff that I have now I put down to the fact that my life is hectic, I have always had jobs that involve the mind, things have to slow a bit when you get to our age and therefore perhaps its just an ageing thing to a certain degree. I know they will never work out why I got it twice, hopefully my gap to the next one will be another 36 years because I wont be around by that time!!!
Keep thinking of what works for you and get your questions ready for that neurologist and don't move out that chair until he has answered them to your satisfaction. Take it easy and keep smiling as Jonad724 told me, it gets easier as time passes, you get naturally braver and more confident, stay in touch we are always here and if you need the meningitis trust let them know, they came to visit me and were great and gave me a much needed boost to know I was not alone.
Hi, I was diagnosed with Mollaret's three years ago and so I hope I can talk with some experience on the subject. I had VM 11 years ago this year and it was near fatal in fact they were going to call my relatives in at 4.00 a.m after checking on me at 3.50 if I was still deteriorating. I was off work for a tad under six months and was away from energetic physical exercise (I'm a triathlete) for 5 years whilst the side effects were allowed to settle, or as it happens not.
I first had the suspicion I had Mollaret's when I kept getting short recurrences of the VM with the headache I have been left with getting worse, tingling in my lips, numbness in the left side of my face and then all the appearances of being drunk followed by the usual symptoms. In all honestly it feels like it did when I had the first attack but usually with high dose painkillers (Syndol are particularly good) and a long sleep I'm usually the other side of it in a day or two. but feeling very washed out. My GP has also given me amitryptaline for when I am pre-Mollaret's which basically just knocks me out for a similar sort of period. They are however on the anti doping banned list so being a triathlete as well as a technical official I only take them when I absolutely have to.
In 2009 I think I had four attacks and then similar in 2010 and 11. My last attack was new year's eve 2011 the only difference being is that I am considerably fitter than I was in previous years having tackled my first half ironman in 2012. I really don't know for sure what triggers the attacks I know stress and mental tiredness are contributors but whether the physical fitness is a preventer or not I don't know. As with most things Mollaret's its a bit trial and error and for me it seems that being physically fit does depress the virus (Herpes Simplex in my case) from triggering new attacks. When I feel an attack coming on in the past one of my family has written the symptoms down and what I had been doing that day so we can see if there is a pattern. I have a feeling alcohol seems to be a trigger even in small does since on 'beer and curry' nights attacks seem to be more prevalent. I never did drink much but I don't drink at all now but happily I can eat curry!
In my experience actually being diagnosed with it was comforting but nothing much has changed all in all. It is, as you know, very rare and therefore getting treatment is a bit hit and miss and I think you have to prepared to enlist some help and try work out causes and triggers for yourself in the absence of any trials.
Please feel free to send me a direct message through this site as I am more than happy to help wherever I can. Thanks, Jonathan
Thanx for the message Jonathan. The 'hit and miss' aspect of this syndrome is becoming clear to me. I guess because it is rare and so little research has been carried out. I am feeling that a diagnosis will help because all of my ill health has been such a mystery so far. None of my symptoms ever seem to replicate and the only time I am aware of anything going amiss is when the headache has reached an unmanageable stage - even then I have doubted the outcome. How do you manage with Syndol? The only thing that seems to work for me in the first three days is large doses of Morphine (horrible side efffects!) What I am really afraid of is that I do not recognise when the next attack will occur given the variation of my symptoms each time. I am very healthy otherwise and so may be in denial about the severity of what I feel before an episode. There seems to be a pattern in that people have latter episodes some years after the first episode. Age and deteriorating immune system may be relevant. I am 51 - how old are you? Keefy states that he had 2nd and 3rd in mid-50s. Could there be some corrolation?
I was just looking through HU and realised I hadn't replied to your comment, so sorry! The way I tracked the symptoms was to keep a short diary entry for each day and then when felt different I logged what felt different. To be honest I rarely remembered writing the symptoms down which indicates that if I was trying to remember how I felt then I wouldn't be able to because my brain was already under strain. This could be the same for you, it took me quite a while to work out that I needed to do this because I couldn't fathom out what was causing the attacks and not realising I couldn't remember how I felt. Sounds daft i know but its an unknown which is unknown if you see what I mean. This could be why you're not recognising the pre-attack symptoms because in past attacks you have not had symptoms which you remember and recognise. I'm 51 and I do get tired more easily although I have worked out in the year since I replied to you that it is long periods of stress which trigger attacks again by looking at correlation between when I have been under a lot of stress, I'm a project manager so it's tough not to be, and the timing of attacks. With Syndol I get on OK but any codeine based pain killer is OK. Codeine is converted to morphine in the blood stream so I'm told so I generally sleep after a couple of doses. Like you I used to not recognise when an attack was coming and very often just keep going regardless but the thing with MM is that it bites if you do that. My attacks are now down to 2 or 3 a year under management and even then I think I can recognise what's coming, or more accurately my family recognise what's coming and get me to take painkillers and go to bed. I was very ill at Christmas with four concurrent infections and my GP told me I was lucky not have come back down with full blown VM again as I had been diagnosed with MM but I don't know this is the case. Fortunately my current doctor is very good unlike my last one who told me I couldn't have MM as it was very rare. Hope you're OK and apologies once again for the long wait for the reply.
Hi xx I had vm April 2012 .... Then taken back in may2012 end of may with it again(although I still find it hard to believe) then again September (midde)2012 .... Still undergoing tests but panic so much if any pain now ... How do you cope? I am scared to go out ... Every time I go near someone I am in bed for days...
OMG; this sounds really scary!! I too feel a lot of fear when I feel a slight tinge of pain but am trying to live with it. The only way that I have managed so far is that no fatalities from Mollarets have been recorded so far ( so I think I cannot die - but this may just be mine / general populace ignorance) but the fear of the going through the whole thing again fills me with dread. Perhaps people are draining the last remaining bits of energy that you have left and so you cannot cope with too much social interaction. Maybe seek more solitude than normal until you have more energy. So many episodes so close together will drain / exhaust anyone ..... give yourself time .....
Hello Jocey1. I know you wrote this years ago but was curious if you still have trouble with VM? I am on my 6th round of VM and found your conversation quite helpful. So, thank you. Now if can now get doctors to help me a little more than prescribing pain killers that I'm unable to take. (I'm sure it's a battle for everyone in this situation). Again, thanks for your information.
I think I have MM, but not sure, I have recurring syjmptoms since meningitis when I was nine in 1971. Only today did I discover that people even KNOW about recurring menigitis symptoms as my doctor has always said to me, 'no, doesn't exist, impossible' and diagnosed me with chronic severe CFS/ME
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