Meningitis Now

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Mollaret's Meningitis.

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Hi, I thought I would raise awareness about this awful condition. I have had three episodes of viral meningitis and hospitalised due to this condition, each bout has been confirmed with a Lumbar puncture as encephalitis viral meningitis. I have been confirmed as having Mollarets meningitis/encephalitis. I can get sick at any stage and there is no cure, its a very much maligned condition, its is often misdiagnosed and mistreated. I spend two weeks in hospital and every time I get sick, my speech is affected, I've left side weakness and lethargy.

I keep being told "You're lucky its only Viral Meningitis and not bacterial" and I find this very upsetting and annoying as there seems to be a perception that the viral for of the disease is not as bad as the bacterial.

Viral Meningitis is known as the "Silent killer". People think they have the flu and just go to bed with it, sometimes never to wake up again. This is what nearly happened to me the first time I had meningitis and it was a close run thing.

Meningitis is a nasty, life threatening disease no matter what form it presents.

The viral type is too often written off as being "less serious" but its not.

I have permanent disabilities as a result of viral meningitis and find it a real struggle to carry on as normal some days.

I live in fear of getting ill again, and it is a real strain on my life.

The Neurologist who cares for me has told me that there is no cure for Mollarets Meningitis, all that can be done is to try and prevent me from becoming ill again.

I don't want to scare anyone, I just want people to realise that this is a real problem.

My husband is a paramedic and was with me when I became ill, he misdiagnose it, he thought I had the flu as so did I, I not saying that you need to call 999 every time you have a cold or flu like symptom, just be aware.

Thank you for reading .

Sharon. x

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57 Replies

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Hi Sharon

So sorry to hear you are a sufferer of repeated VM and have now been given the Mollarets diagnosis. I cannot comprehend what it is like to live knowing that the VM could reoccur at any time and many times in the future.

Thank you for reminding us of the condition, making others aware of it and providing a good understand of the impact.

A long term member on here, Jonad, also has Mollarets and also posts about the impact and his progress etc. There are also a couple of other people too on here with Mollarets. I am sure you will get some responses from those who also have Mollarets which will be good as they truly can understand what it's like to be living with that diagnosis.

Best wishes

Thank you Strawberrycream, I have seen that other have suffered as well. My only concern is that it seems that people have had numerous reoccurrences of VM but without it being confirmed, this is a worry. Without correct diagnosis this condition will not be taken seriously enough.

Hi Sharon, I to am like you, living with the fear of again developing this terrible disease. I have had it several times and with the last bout they discovered i had a brain tumor. I live in terror sometimes when i get a migraine and fear that it is VM again. My husband is always trying to pacify me at times like that. Fortunately, my brain tumor is benign and i have regular Brain scans to keep an eye on it, but again, every time i get a fierce headache the panic begin's. Its a terrible thing that we live with, so i do understand you and what you are experiencing. I have been left with some real problems my-self, and yes i am tired of being told. " O"it was only Viral you were lucky, to some extent this is true, but not alway's as you say, and i was a Nurse up until my last bout four year's ago. Have not worked since because of the long term complication's. I no longer tell people that don't know me that it was Viral, i dont lie i just say it was Meningitis, its easier and doesn't leave me feeling frustrated. I have heard of people having it multiple times with no long term effect's, so i hang onto that . I also know of people that had it twice and never again, also a positive. Being optimistic is far better a state of mind. I feel for you as i understand. having a husband as a paramedic is also a positive for you. So, Optimism and a positive outlook are the thing's to focus on. Big hugs to you xx

I'm sorry that you have suffered so much with this terrible illness and as per my reply to sharon, I wish we lived in a world where this illness did not exist. I believe though that you are doing an injustice by not telling people that you had viral meningitis. I say this not to 'downplay' the VM but for the very reason that you say people seem to dismiss the seriousness of VM, you can be the live example of how much VM affects patients in the long term. This will change people's attitudes. It is very worrisome from the perspective that you (although not lying) are misleading people to believe that you survived BM which then, in turn, makes people believe meningitis is not a life threatening condition, compromising the education that people need on this illness. Be honest, tell them you had VM. Tell them the devastating effects it has had on you. Tell them how long your recovery is and if you are still recovering. This is so very important. Educate people. If people become aware of how serious VM is, they will seek medical assistance much sooner. If the person has BM the awareness of VM will be enough to perhaps save a life. Thank you for sharing your story. You will find a lot of support on here. I lost my mum to meningitis. I want everyone to know about meningitis and am learning more all the time. X

Recurring viral meningitis seems to be more common than people realise.

I don't know why I'm only seeing these posts now. I too am a sufferer. How are you now?

I understand too well-- have the diagnosis myself.

Hi Sopie, How did they diagnose you with Mollarets?

I'm in Australia, and have still not been officially diagnosed. We are so behind here in all these things and sadly the medical community are fixated on the popular sexy illnesses so the awareness groups and fund raisers can all look terribly virtuous. People understand cancer is bad and are clueless that there are many other diseases that are just as bad if not worse in some instances.

Agree !!! Speak to Jonah on here , he’s been a great help to me

Please do, get in touch, I’m happy to help as I’m a volunteer common ambassador for Meningitis Now.

Hello Jonad724, I suppose you;re in the UK. I'm in Australia and since 1986 have not gotten anywhere really more on the meningitis. The medical field want to categorise me under some inexplicable don't know what's wrong category which is quite insulting at times. I jump off the medico roundabout to take a break from time to time, and with symptoms I'm now wondering if I have MS. this is what happens when no one gives a fig about getting the correct diagnosis. Thank fully the UK encephalitis society suggested to me I may have Mollarets and that certainly seems to be the case, but how do I get a diagnosis here in Australia. I'm stumped. The nerve demyelination and pain that has resulted seems to be another nail to cop.Cheers

Hi Veba, I'll PM with some suggestions if that's OK? Thanks, Jonathan

That's fine Jonathan. I'm still not quite o fay with this site and how it works. Everything seems to be delayed with announcements. Maybe it's the time difference. Where do I look for a PM?

No problem, the server is based in the UK and they send an email once a day in the morning our time hence the delay in notifications. If you go to notifications in the top bar on your home page you should be able to see my message there.

Hi jonad, I did write you a while back but didnt get any answer. Is this the right way to connect?

Hi Clarkjo, I'm so sorry I must have missed that, if you click on my profile then 'send message' it will come to me directly as a message and I will happily reply to you.

Thanks. My mailbox is chokkas so I have to find room..

Hi,

Thank you for your response, I too feel very frustrated, mainly with people who say they've had VM when its just a migraine, it muddies that water for the real sufferers. I've found in the small amount of research I've done most people who think they've had VM haven't, and its not been confirmed. I feel really positive but I just wish people would stop down playing this awful condition.

I work full time at present but find that really hard, but that life I suppose.

Thank you again, for your reply.

Sharon. xx

I hear you Sharon. I had Lupus Meningitis, then some other meningitis and now they really don't know at all. It's so frustrating. x

Hi Sharon, sorry to hear that you have had Any form of meningitis, let alone vital meningitis on three occasions. I can only begin to imagine that you worry that whenever you have flu like symptoms, it will become another bout of meningitis.

I admire your courage and openness to share your story with the purpose of educating others. There definitely needs to be more public awareness of meningitis as even your husband in the medical field did not recognise the signs.

To educate others you need to educate yourself as well. By no means is VM something to be sneezed at, the recovery period can take a long time and in your case with reoccurring bouts, it would take a further toll on your body. Bacterial meningitis is a much more serious for, of meningitis. If you research the mortality rate of bacterial meningitis (for patients of all ages), you will find the two are not comparable. All medical websites will confirm that not only does BM kill if left untreated (in as little as 6 hours), septicaemia is often experienced simultaneously with BM which means that survivors not only have to deal with the after effects similar to VM patients, but they may also loose body limbs. Scarily the hallmark signs of BM are the same as VM, headache, stiff neck (but not necessarily in young children), fever, irritability, sensitivity to light and sometimes vomiting. It is rarer to come across BM survivors. This is why it is important for you to TELL people that if they suspect meningitis, they must seek medical help urgently. The treatment offered for VM is fluids, rest and recovery. BM treatment requires urgent IV antibiotics or the patenting will die. The earlier that antiobiotic treatment is started the better the chances of survival and lessens complications. I feel for you that you feel that people are possibly dismissing your illness, they do not mean to and should be more understanding. I really hope that you DO NOT have any more episodes and thank you for speaking out about your personal experience. All the best xx

Thank you for your reply.

I am in no way saying Viral Meningitis is worse than Bacterial.

I am saying it can be just as serious.

It can, and does kill. It is known as "The Silent Killer" because it is often mis diagnosed because the vast majority of people always associate a rash with Meningitis, which only develops with the bacterial form.

In the last five years I have had Viral Meningitis three times.

Each time I have been hospitalised for two week and I haven't just had IV fluids, I have had IV anti virals for the whole time I was in hospital.

I have had to have a central line inserted as the prolonged use of anti virals damages the tissue surrounding a normal IV.

After the first bout, I was left with long term damage equivalent to that of someone who had suffered a stroke, hemiplegia, memory loss, speech problems, which each subsequent bout has worsened.

This is why I do get annoyed and upset when I hear "It was only Viral Meningitis".

Yes I have not lost limbs, suffered blindness or died, but the first attack of Viral Meningitis came close to killing me.

The problem with Viral Meningitis is that it is often mistaken for a Migraine, as it has been with me on the last two occasions I had it.

The A&E department sent me home telling me it was only a bad headache and when hours later I was re-admitted, the condition had worsened and it took longer for me to recover, and the permanent damage done was more serious, and longer lasting.

The swelling of the Meninges is a serious illness, regardless of what causes it.

After every piece of research I've read, VM is still brushed to one side. On Meningitis now, they down play it, I have read list after list of names of people who have died because of VM. If I hear another person say "oh its only VM" ill scream, walk a mile in my shoes, that's all I say!!

I'm not trying to steel anyone's thunder, I'm just scared that "Meningitis" whatever its form its a DANGEROUS condition.

So true

I agree. I nearly left this earth with it.

Sorry that this is turning into a weird debate. I hear you completely, the information on vm is not accurate. It is just as serious as BM and has actually no real treatments. It's very frustrating and antagonizing. Thank you so much for your post it is important to speak about this.

As much as I like to hear of people recovering so well and running marathons this is not the case for me either. I am 8 years post vm with 2 episodes and a really strong reaction to sun that can last up to a week. It's so frustrating. I have tried everything I could from herbs, massage, acupuncture, chinese medecine and it's still not that much better. But I have good periods and if I'm really gentle and careful I can stay out of symptoms. So I hang on to that. I try to accept this new life where i get to do so much less and live quietly at home. This is what i can do to stay positive. If i try to go back to the super active person i was i just suffer.

Thanks all for your shares. It would be nice to hear about things that works for you. Take care

What you should know is that I also had Mollaretts VM 3 xs and the first time I was diagnosed I wasn't diagnosed in a timley fashion and was told one more day without antiviral meds and I would have had full blown encephalitis. I was having body jerks and involuntary tremors. So despite what others may be believe, VM doesn't always call for fluids and rest, and it can be deadly. Thanks for your thoughts. Just wanted to share my thoughts and real life expirences.

Viral and Bacterial are both as bad as each other. Saying someone is lucky they don't have some particular type doesn't help any situation. I agree.

Hi Sharon, I agree that VM is a serious illness and I'm sure that there are fatalities. I'm not here to "win" a BM v VM debate, and I know you are not either. I get that you are frustrated because of the side affects you are experiencing. There are different types of bacterial meningitis. Phenumoccocal meningitis is the most common, has the highest rate of mortality and IT DOES NOT present with a rash. I just thought I'd let you know that it is misconception that bacterial meningitis always has a rash (that is meningococcal meningitis that you are thinking of as it presents typically with rash in the later stages of the disease which is why Drs tell us not to wait for the presence of a rash). I wish my mum had VM as it is unlikely she would have died. She was sent home by the GP and was paralysed 6 hours later. BM has a 100% death rate if left untreated. I don't think anyone can argue that statistic, scary stuff.

That is why VM is "brushed to the side" as you said. I definitely without a doubt, agree whole heartedly that any swelling of the meninges is serious. All forms of meningitis needs urgent medical treatment. This is the message we need to send others.

I was diagnosis with VM and was hospitalized some 17 times -- ICU x 5- starting in 1994-- in 2005 I was in ICU and according to my medical records in multi system failure -- swelling on the meninges cause symptoms similar to convulsions -- I was lucky and after these admissions I was referred to an immunologist who put me on 3 mo of IV Immunigoblin therapy, while it was incredibly expensive, I have not been hospitalized since 2009. However I still fear worsening symptoms as of now I get the headaches and stiff necks but manage at home. typically bacterial meningitis depending on the bacteria can be highly lethal immediately and timing is critical. However viral while not as rapid, can be very serious, with some liteture indicating a 30% mortality. Bacteria usually can be managed by antibiotics where as virus are not, and antiviral meds are very different than antibotics for efficacy. Regardless bacterial or viral this is an incredibly serious illness which is greatly under appreciated, for the viral version, in my opinion. As a nurse, I hear the coffee break conversations of -- oh well it is just viral, they will be fine. Not true, they might not die in hours, but the long road ahead of them can be serious. The viral patients, don't have antibotics to rid them of the bacteria.

I had a rash with vm and the dr. Kept asking if I had a rash. It finally reared it’s ugly head.Is a rash common with viral. It was all over my back and very itchy. But of course impossible to itch, so my partner sprayed it with alcohol when he came and the burn was a great relief and seemed to help dry it up. I think the nurses, weren’t to hip on it but I was liking it.

My symptoms are stiff neck, pounding excruciating headache, photophobia, tingling and numbness and the need to curl up in foetal position and severe nausea. I don't recall if I had any rash, but I do believe that it was a result of adult measles infection I contracted in 1992 in Asia. Prior to that I had viral encephalomyelitis in 1986/7 thought to be caused by a flu virus, mosquito bite. I was under a lot of stress too at the time and quite possibly had a mild bout of shingles 12 months prior. I sometimes get a flare up of shingles on the base of the spine when under stress or very worn down. I feel that coming on with that painful pinging pins and needles feeling at the actual site right on the nerve endings. Anti virals calm that down on most occasions before anything develops and also steroid cream on the spot clears it up if it actually breaks out. It's extremely painful and itchy if it breaks out. Does anyone else get this?

I agree whole heartedly with you, It is a message that need to be sent to others.

Maybe we should just say Meningitis is a killer.

Thank you

Sharon. x

Hi, as StrawberryCream says I have Mollaret's and VM also nearly killed me too. I came within 10 minutes of my relatives being called back in but was discharged a day later because 'VM is only ever like flu and is never serious'. That I was rushed back in three days later almost dead still didn't convince the hospital that it was serious. The issue is in training doctors are told this exact same thing, I work with GPs and I have met enough consultants in my time to have asked many of them and each has said the same thing. I am now over 13 years post VM and still suffer with a variety of side effects and of course Mollaret's. I have worked out though that this is triggered by stress so I do my utmost to avoid really stressful situations and I recognise the early signs of an attack so I am able to manage it not the other way round as it used to be. The diagnosis of Mollaret's is when the symptoms come back but these are not accompanied by an actual viral attack so repetitious VM isn't technically Mollaret's but when you're in pain who cares what the technical diagnosis is. If you haven't recovered properly from the VM this will trigger multiple attacks as it strikes when you're immune system is at its lowest and so its a vicious circle if you don't rest and recover properly. If it's any consolation I completed my first half ironman triathlon (1.2 mile swim, 56 mile bike, 13.1 mile run) and have since done another two, the last was in August 2015 so there is light at the end of the VM tunnel even if it means working around the after effects.

Good luck!

So Jonad, I will b 2 years out from v/m in sept. I am still mostly bed bound. I sleep 8-10 hours a night and will nap many days 2-4 hours a day. I still have most symptoms of v/m milder,all but vomiting, and my dizziness is only showering with my eyes closed while finding my hair,and if I stand up too quickly. I finally got an apt with a neurologist to discus things with, but wondering if I have recuring meningitis is my concern . I keep myself as stress free as earthly possible so as not to put myself in attack. Do u think from the sounds of it that it is Mollarets or still fallout from v/m? I really am concerned about contracting it ever again. Just don’t know if I can make it thru again. Mahalo in advance for your opinion

I do take an anti viral

I understand everything u said, after 17 hospitalizations since 1994-- last hospitalized 2009 -- but still have symptoms especially when under stress. ------- don't understand why this condition is like a big dark secret.

Hi I am 26 and have had encephalitis viral meningitis twice (almost two years between the two episodes) each time terrifying. I have had an array of side effects from this disease like vertigo, hearing loss, panic attacks, nightly fevers, migraines, constant back pain and I have no energy, I have fallen asleep in restaurant sitting in a chair. Its physically and emotionally draining constantly stressing on when to take my symptoms seriously like when do I go to the ER or when to just rest. My doctor told me she rarely get cases of Mollaret's, the last one she saw was 10 years ago and all she can do is give me an anti viral that "may" help prevent a reassurance.

I'm seeing a very alert "new" Dr tomorrow for the 2nd time, and this thread has given me the courage to ask her about this. She has been fabulous with low carbohydrate high healthy fat which most Drs shy away from because they haven't been properly educated. I took me over a year to get into her clinic as the waiting list is so long. By the way. This way of eating has helped a great deal, especially with energy.

I was diagnosed with Mollarets Meningitis four years ago. I have had Viral Meningitis twice, the 1st time I was 30 years old, I almost died, spent a week in ICU, the 2nd time was 11 years later, over a week in the hospital. I was sent by my Dr to The Center Of Disease Control Mn to figure out how I had contacted it twice, as a homemaker. My blood was sent to the CDC super computer in Washington, which came back as Mollarets Meningitis. Unfortunately there are many Drs that have never heard of this disease. There is limited research on exactly what prognosis, short term or long term on having recurring Viral Meningitis causes in us Mollarets. I know I now have numb/tingling fingers & toes, double or blurry vision at times, days to hours of no energy, nerve problems in my legs, recurring headaches, memory problems and days where my neck is tingling and sore, a yearly Neurologist appt with a yearly MRI, as I have white matter Disease, they don't know if it is the Mollarets or related. I also have more growing white legions every year on my brain. I have been tested for MS, other neurological diseases and 20 other diseases/issues looking for the answers to my tingling/numbness, pain and given yearly blood test and markers due to taking my daily meds to keep the Mollarets from recurring.

Unfortunately, Viral Meningitis can kill people, and it does but now imagine having it 2,5, or 15 times. Every time you hit your head, concussions cause later brain issues, science is learning. Now imagine that swelling trauma yearly with some Mollarets sufferers! It is more then just Viral Meningitis... and it can cause long term issues! We have created a Facebook Support Group for Mollarets Meningitis. There are over 200 of us, some are support givers, most are suffering this disease. As we talk, we learn our health issues are the same, shared and supported. It helps us find Drs, Support therapies and daily encouragement. If you suffer Mollarets seek out our Group! Thanks....

I have mollarets and I also get numb/tingling fingers and toes / feel and hands.

I too have that permanently from the last bout of meningitis viral.

I want in please I believe I have and of course I am looked at like I’m from another planet speaking another language!

I'm coming to your page immediately. I was 26 when I fist got viral encephalomyelitis in 1986 and have had recurring viral meningitis and copious worries since with autoimmune. I hope your page is still active. You sound much like us all being shoved from pillar to post. thanks MikkiB I'll look for you facebook page.

Yep ive had it 4 times ... so depilitating ... 1998 2002 2012 2014 ... and just had a mini bout now .... ive had weeks of bad headaches like for 6 weeks never ending but this hit me 5am in the morning on the 16th Feb, I didn't go to hospital as it wasn't full blown and after having it 4 times previously I knew it wasn't a full blown one, ... still feeling weak and giddy will take a while to get over it but not a year as per normal full blown .... thankyou for sharing your story I do hope you don't get it again ..

Yup. In flu season too. Can feel it coming on and now throw down and anti-viral, It seems to help, sometimes, sometimes not but anything to avoid the full sting.

Does anyone take natural anti virals for mollarets? Like red marine algea, lysine, astragulus and olive leaf?

Any do you take them daily?

Haha. Red marine Algae is in our thickened cream would you believe? No I take Valtrex when I get that feeling of it coming on.

Hi Sharon... I have a good friend who has experienced the same symptoms..and has been hospitalized 3 time and treated for Menigitis....she has not been able to find a Neurologist who will diagnose her...she has all the symptoms with each outbreak...any suggestions on where to see a Neurologist who knows about Mollaret's Meningitis would be greatly appreciated

Neurologists are hard to find that give a fig in Australia.

Hope you are doing well,

I was told I had Mollarets after a nasty VM case. I now have 24 hour a day migraines and due to the current "opioid crisis" it is impossible to get pain meds. I truly think this country has gone crazy. The could not stop the flow of street drugs so they stop Doctors from helping people. Make sure you watch for other symptoms. It is a rough road, be careful and ask questions. Never be afraid to get a second opinion. Again hope all is well with you.

Don't now where you are, but Australia with our Health minister has turned into a nanny country too. Government poking their noses into our medical lives and Medici cabinets It's a nightmare.

Hi , I honestly hope you are feeling better . What can I say I have had MM 28 times now and it is the most debilitating disease and my frustrations are that nobody really understand the damage and the havoc it causes to our memory , speech , movement etc . I am just recovering from an attack that was triggered by the first dose of the covid vaccine , needless to say I will not be receiving the second dose . I wish there was more knowledge and understanding about MM and people believe how dangerous it really is .

Take care xx

That's horrible. Did you happen to find the FB page of MikkiB by any chance. Where are you located and did your ever have viral encephalomyelitis prior to recurring viral meningitis? What tx do you use?

Hi Veba I live in Liverpool , England . My first attack in 2011 was viral encephalitis and they also thought I had had a stroke . The following year I had it 3 times and lumber punctures revealed VM it was then decided I have MM . I stopped having lumber punctures 7 years ago as my symptoms are always the same and under my ID doctors we decided I would not suffer anymore LP s unless my symptoms differ .

I take 1000mg valicyclovir daily as a suppressant. I was in hospital last October on Iv acyclovir for 14 days and again in hospital 3/4 weeks ago after my covid vaccine .

Take care x

Dear Sharon,I hope you're still in this group. You could be me. That's almost exactly what has happened to me. I had viral encephalomyelitis in 1986/7. It was thought to be caused by mosquito bite, influenza virus or flu vaccination. The diagnosis was confirmed with multiple lumbar punctures and scans. Worst headache ever, stiff neck, photophobia, violent vomiting, coma, paralysis, numbness and tingling that has never resolved. I was extremely ill touch and go for at least 6 weeks or more and still ongoing 6 months the numbness from my waist down took years to tone down. I remember my Mum being terrified as my sister died at 18 months old from what was thought to be bacterial meningitis in the early 1950's. Since 1987 measles caught in Thailand on my honeymoon in 1992 would you believe it? (don't know if this had anything to do with the recurring meningitis and autoimmune) or the brain and spine inflammation in 1986/7, but since then, instead of flu or even a cold or sniffle (except for asthma) I get viral meningitis that intensifies the numbness and tingling, the stiff neck photophobia with all the"fabulous" meningitis "trimmings" I stave off as best I can as soon as I get the feeling in my neck and that very peculiar headache and nausea and photophobia using prochlorperazine maleate for the nausea and Panadeine Forte active ingredients paracetamol and codeine phosphate hemihydrate, and a dark quiet room. Going to hospital is hopeless as it's noisy, the lighting far too bright for photophobia and I'm hypersensitive to noise. The registrars just want to experiment on me and I'm left with bruises and injury. On one lumbar puncture they wouldn't put me under and lay me on my side but made me sit up and broke the needle off in my spine and all my spinal fluid spurted out all over the treatment room and I was left with an even worse headache and threw up all over their floor, I thought serve you right you beasts :-). During this time I had an MRI that revealed two brain aneurysms behind my eye and wonder is that related to the indescribable headaches. The last bout a couple of years ago that left me with unresolved paresthesia in my lower limbs and pins and needles and an electrical shock here and there in other parts of my body but the nerve pain is dreadful. When it flares up after I'm tired or stand or walk along way (which I can't really) from just the tingling numb it's like someones stabbing my feet and body with knives. I have also been labelled with all these autoimmune things I'd never imagined and I doubt many of them. I must say they are preferable to meningitis any day. Lupus, Sjogrens. I'm wondering now if I actually have multiple sclerosis, but the last test didn't show and CNS damage, just peripheral. The symptoms however are very similar and the fatigue from time to time is crazy. The weird pain I get in my joints, especially my hands and ankles on waking for no reason I can think of, and the onslaught of cramps during the evening and sometimes during the day, especially the back of my knees, instep and toes is a hazard. I throw down the magnesium and drink salted water which is the only thing that gets rid of those excruciating cramps. My Rheumatologist put me in hospital for Ketamine infusions over two weeks and I've done that 3 times now and it gets rid of that nerve pain for a while, but who can afford 8 weeks out of their year getting 4 treatments lasting 2 weeks. That's the kicker when it's not cancer, or one of the well known diseases, no one gives much of a cracker and there's no help in this neck of the woods. Lyrica and all the usual suspects do not work. I am now trying Epilim (an epilepsy drug) it's not working either after 4 months and I'm now wondering did I get a reaction from this drug or was it the Pertussis vaccination I got to be able to see a new baby as they both happened about the same time. My entire body was covered in a rash and welts and the itch was unbearable and I'm now left with a few scars.Has anyone had any experience taking Epilim (Sodium valproate) or had any reactions to it or any reactions to Pertussis or any inoculation?

Sharon thanks for posting your experience as I don't even talk about it anymore as even my family and friends forget and expect me to carry on like the perfectly healthy person I once was which I attempt to do every single day and hide the wince as I walk. I can't do that when the meningitis hits though. That's me out for the count.

Sharon I totally empathise with you and would like to keep in touch with you or anyone else suffering the same ridiculous stuff year in year out. If you were willing, maybe admin could put us in touch to bounce things off of each other and share. It's a very tight and lonely rope when you have no one who has a clue about it around you.

I wish you every health and happiness, and hopefully there will be an answer too. I see your post was 5 years ago, but it's still a very real thing. Are you still suffering?

V x

Good morningI'm so sorry you are feeling so awful all the time. I have Mollaret's too and use acyclovir which actually works really well for me. I know I will be taking it forever but because it helps I don't really mind. I hope you find something to help you with your symptoms too which allows you to lead a relatively normal life xx

i to have had vm 4 x but they say its not mollarets each time hospitalized each time confirmed with the ol lumbar puncture, which is almost as painful as the vm itself , each time after the 1st time i have come down with this i knew exactly what it was , it has a unique and different type of headache that once it hits you , you know exactly whats gunna happen , im 60 yrs old i think if i ever get it again it will kill me

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