Anyone experienced recurrent meningitis? And did you get any answers as to why it keeps happening?

[Munners]

I had meningitis four years ago (suspected bacterial, but was already heavily medicated with IV antibiotics and steroids prior to my lumbar puncture) viral meningitis two years later, and now here I am again slowly recovering from a third bout of viral meningitis. I have about 2 years of peace between bouts. It knocks me off my feet completely for a few weeks each time, and then takes several months to fully recover. It absolutely sucks and I can’t get any answers. It’s not Mollarets apparently. Now my neurologist thinks it might actually be autoimmune meningitis together with encephalitis as there is a growing body of research. This time I didn’t bother to call the ambulance. In fact I’ve been quite stubborn because I don’t want a LP just to be told oh it’s viral here’s some pain medication. So I spoke to my neurologist who has prescribed me Tramadol, Dexamethasone, Magnesium, and Ibuprofen. And Oxycodone if I’m desperate. I take the Tram and Dex every eight hours and the Mag and burden every eight hours with four hours between the pairs. So far so good. I’m managing on my own and I figure if I can get a good treatment plan that works, as this seems to, then I will keep it in my cupboard and follow the same routine next time (in agreement with my neurologist). It’s awful, but I think I might finally have found a way to manage. I’ve had every test and scan going but that fact is that they just don’t know Can anyone relate to my story??? I could do with an empathic friend!

[Trabre]

I've had it 5 times!!! Ugh, so sorry you're going through this. I was told so many times it wasn't mollarets as well. Finally this last time, in May I was told it was. I guess if they don't find the specific cells they say no but the cells aren't always present. Either way, I totally understand what you're going through.

[Munners in reply to Trabre]

Thanks so much for your reply! I’m starting to feel like some kind of medical marvel. I’ve had the following diagnoses: bacterial meningitis, viral meningitis, auto-immune meningitis, auto-immune encephalitis, and finally intracranial pressure due to oedema. It’s never ending! Indeed mine also seems to fit the profile of Mollarets. Although I seem to be responding well to the dexamethasone, which I accidentally overdosed on (took three ina day rather than one) but has done me a favour. My neurologist said the strong first doses of dextramethasone has probably kick started my recovery quicker, but that steroids don’t normally help meningitis that much, but help encephalitis more, hence th dual diagnosis.

How do you prepare for the next episode? I want to have a stock of meds so that I can start treatment without all the waiting. I notice already that I’m having fewer side effects (memory, hearing loss, confusion) etc since starting the medication promptly. Then I can also avoid ambulances, lumbar punctures and hospital trips.

Did you have an LP for the Mollarets diagnosis?

Thanks so much for your email and support! Really appreciated!

[Munners in reply to Munners]

Also, how long does recovery take now? I read that Mollarets eventually burns itself out and as such gets easier each time. I really hope that’s true!

[Trabre in reply to Munners]

So, for me and anyone else I've spoken with...NO! This does not get easier, each episode is as bad if not worse than the last. Each time it's like it almost gets worse...each time is a blow to the brain and more and more after effects appear. Time before last, I also had sepsis. I wasn't sure I was going to make it through that one. I myself am on daily antivirals and take lysine. I eat a whole foods diet and exercise to help my immune system. As of how to prepare...there really is no way other than having meds on hand. I need a lumbar puncture every time...they as you know are awful. I think I will ask for versed next time though.

I have pretty bad short term memory problems, bad headaches and weird head pressure followed by my hearing going out for a few seconds...caused by my recurring meningitis. Not a lot of research has been done but it is seeming it stems from maybe immune issues. All we can do is keep ourselves as healthy as possible.

[Munners in reply to Trabre]

Wow! I’ve never known anyone have the weird hearing thing apart from me! I’ve been to ENT specialists and they were totally confused. Indeed I have it from meningitis. First time I lost my hearing partially in one ear for several days, then it eventually came back. Now, it goes every now and then for a few seconds, followed by tinnitus, and the it comes back. I put it down to something vascular as it’s definitely sensorineural. Do you have any more information/advice about the strange sudden temporary hearing loss?

I guess I’ll just have to see how it goes. I haven’t had an LP this time so they won’t diagnose me with Mollarets which means no anti virals. I’ve planned already to clean up my life. I already eat healthily, don’t drink much, don’t smoke and recently started running again. I’m now taking vitamins and drinking green tea for an extra boost. I’ll get my meds stock and then hope for the best. Thanks for your support, it really means a lot. I have another appointment with the specialist tomorrow so I’ll keep you posted....

[Jackiemerritt22 in reply to Munners]

long shot but do you have any problems with your ears or have you experienced and fluid loss from nose or ears.

[Munners in reply to Jackiemerritt22]

Hi, cants say I have had any fluid problems, no. I had grommets (tubes) three times as a kid due to recurrent middle ear infections. But I don’t have Menieres or anything wrong with the inner ear/vestibular system. At least I don’t think I do. As I said in my earlier post, I have this weird temporary hearing loss every now and then. Only for a few seconds then it comes back. No dizziness. No one can explain it either.....

[Zenoosh]

Hello there! I've had VM four times in 4 years. The first time was the only time I went to the ER (after 4 days of the worst headache, vomiting, weakness, you know the drill) After a LP, they thought it was bacterial, and we're puzzled at why I didn't have a fever or cognitive difficulty. They tested the CSF again and then said OOPS it's viral! They had given me IV acyclovir, which I immediately had a reaction to. They tested for herpes and said that was not the cause. They did not know JACK about it. On day 5, my headache began to subside an I was discharged. So I left the hospital with no real answers and the doc said, well you can be sure you won't ever get it again! I felt so much better after day 5 and was able to return to work on day 7. No lasting effects other than a very low level headache 3 × a week. Cut to 9 months later. Same exact thing. Same exact course. I could set my watch by it. 4-5 days in agony. Day 1: wake up with headache,stiffness and fatigue. Day 2: headache has me totally bed ridden and I'm useless. Cannot eat or drink ANYTHING or I vomit bile. Days 3 and 4 are the worst as I'm in excruciating pain with profound weakness, fatigue, and very strange dreams when I manage to get 10 minutes of sleep. Day 5 the headsche gets less and less severe and I can drink some water/electrolytes. I never bother returning to the ER because they wont give me any pain meds and the only things they want to test is the LP (which I know can be messed up and cause even more issues). Plus it costs me $5000 for each ER visit (that's WITH my insurance), for WHAT? An uncomfortable bed? A botched LP? No answers? No thanks. I already know it's VM. They can't tell me why I got it initially or why it's recurrent.

I've had it 4 times now. Always runs the same course. I do it with ZERO meds as the docs will not prescribe anything, likely because none of them have ever had VM, and they have no clue how much pain we are experiencing. I cannot impress upon you how very lucky you are to have found a physician who will prescribe meds for the pain.

I consider myself lucky that it's only 5 days, then I'm back to normal within a few days.

I have no faith in my docs. They've given me zero answers. I get incredibly depressed each time I get it, but then I'm so grateful it goes away that I start to live again once it's gone.

I notice it crops up when I've been working too hard, not getting enough sleep, or do a series of things that are too strenuous. So I take it easy, try to get enough rest, take the basic vitamins, and sanitize EVERYTHING often. (I am a cardiac ultrasound tech, so I'm working with patients constantly. I disinfect my room, machines, the air, and wear gloves and a mask. )

It's changed my life. I don't date, for fear that I'll get it again. I don't go on vacations, for fear I'll get it while on vacation. Thank goodness I don't have kids. That would be a nightmare, but I didn't want them anyway so this just solidified that notion.

I have had to do my own research and come up with my own diagnosis since they don't seem to know much about it here in Santa Cruz, CA.

I know what you're going through. It's the worst. I wouldn't wish it on my worst enemy (wellllll, maybe TRUMP and a few other assholish-lying-misogynist-racist-Republicans).

That's my story. I hope we can get some specialists to begin taking this disease seriously. I feel like no one has a clue just how how painful and awful this is for those of us who suffer with it.

I have begun keeping a diary of the dates of symptoms and how exactly this virus runs through my body with each bout.

I wish you all the best in good times, and wish you quick recovery during the bad times.

Please keep in touch.

✌️💛🐱

Lanie

[Munners in reply to Zenoosh]

Hi Lanie,

Thanks so much for sharing your story with me. But wow, what a story. And with no meds must be excruciating. I literally feel like I’m dying the first few days; fever, shaking, back pain, leg pain, head in a vice so bad I think my brain will spill out my ears, vomiting diarrhoea. And you can’t escape it! Lying down doesn’t help and moving is impossible, it’s bloody awful. But to do that for five days with no help is just terrifying. And you even work in the medical field - can no one from work help you out? I also work in the medical field which is why, finally, I’ve landed on my feet (at least this time) with a decent system of pain relief and anti inflammatories. But it wasn’t easy - I live in Holland and the Dutch healthcare system is difficult. They’re great at preventing death, but they do precisely zero when it comes to follow up/diagnostics; they just say here have some paracetamol and good luck. Luckily all my colleagues are doctors and nurses so all my aftercare was arranged by them and not through the Dutch healthcare system.

The specialist I’ve found is actually a colleague in Italy. She’s not a neurologist, but more like Dr House - very engaged, very interested, listens, and thinks systemically. Hence we’ve had numerous discussions in between bouts and it was down to her faxing me prescriptions which sorted me out. And it’s really working. I’m only on Day 4 and whilst I know the pain is masked somewhat, I can just about touch my chin to my chest without dying which is amazingly fast progress. I’m also functioning cognitively and have managed to write all this stuff, albeit not without pain and breaks.

Maybe it helps you or maybe not, but you can see what I take in my first post. Of them all though, I’m convinced it’s the dexamethasone that helped the most. It was the same the first time as well. It almost stopped further developments in its tracks. They said I would start having seizures if the chain reaction hadn’t stopped. What’s weird though is that if you read clinical trials on dexamethasone for meningitis all the results are either inconclusive or controversial. For pain, alternating Tramadol and Ibuprofen worked reasonably well but there was usually one or two hours where it had worn off before I could take the next lot.

I’m also the same as you with regards to disinfecting everything. I have a little boy who shares all viruses from school with me, but this time everyone is healthy and it just came out of the blue. I’m busy, I work hard, but I’m not run down (at least I don’t think I am. I’m also not very good at self reflection).

So what can you do? Just wait for the next time and be prepared. It would be so nice to have a final diagnosis so that we can say “I have xxx”. But indeed VM is not taken anyway near as seriously as BM, yet the recovery time seems to be much longer. First time it took me 5 days in hospital, three months off work and another three months part time working. Second time was 2 nights in hospital then I was discharged with a pot of paracetamol. It took me another three months off work and then five months part time. This time: no hospital, no paracetamol, immediate anti inflammatories and pain relief, and today my specialist called me and told me to try and stay awake all day so that I get a better quality sleep at night. This is really sensible as last time my circadian rythyms were so messed up from sleeping day and night that it took weeks to sleep normally again.

I will talk to her again tomorrow and I’m scared that she’ll suggest I start to lessen the pain meds and anti inflammatories. I’m super scared that it’s all masking what’s going on and that no steroids might mean my body over compensates with pain after. But who knows....

I’m rambling now and should go to bed. But thanks to you and Trabre for your emails. It feels much better just to know I’m not alone

[Zenoosh in reply to Munners]

Hey there Munners,

Oh man I sooooo agree that it's very comforting to know we're not alone but then I feel so awful knowing that others have to endure this as well!!! I've said it to myself many times: we are VERY STRONG INDIVIDUALS to go through this. I have also said to friends that I feel like if I had to endure the pain longer than a few days, I would go ahead and off myself. (I know you won't, but please don't take that as a "suicidal thought". It's just reality and I'm not a depressed or suicidal person, but I wouldn't be able to handle it for extended periods of time without any pain control....it's a quality of life scenario and the 4 times I've flared with VM is no quality at all.)

Have you noticed more women than men with recurrent VM? And most of the peeps here are from the UK or Europe, I've noticed? I could be totally wrong, but that's my observation when I'm able to check in on this site.

I think I will start looking for a Dr House of my own to help me understand this virus. It sounds like you and your team have managed to keep it under control but I know when you're in the throes of it, it's just the most awful thing ever. The fact that you can read and write with cohesiveness whilst in the middle of a flare is astounding!

We need to keep in touch. I always do research the day I wake up with a stiff neck (by that evening I'm useless) then on days 4 and 5, depending on how I'm feeling. I get so happy once it subsides that I don't want to think about it, but if this is my life, I need to find out more about this terrible disorder.

I'm thinking of you and I'm sending positive, healing vibes in your direction.

✌️💛🐱

Lanie

[Munners in reply to Zenoosh]

Update for you: I’m doing much better. I’ve finished with all the medication and I actually had a good night’s sleep last night which makes a world of difference. My neurologist thinks I had meningoencephalitis because the dexamethasone worked so well. She said it wouldn’t have worked that well on meningitis alone, but there was clearly some major swelling/oedema going on as well. With regards to diagnostics; after stubbornly refusing to do anything (like you I’m happy when it’s over and just want to get on with life) I am slowly coming round to the idea of going to a clinic. There’s a specialist neurology clinic that my specialist wants me to stay at for two weeks (!) where they do all kinds of scans and tests etc. I kind of feel like I should do it for all of us, as it’s quite an opportunity. I also owe it to my son so that he has a healthy Mum. Anyway it won’t be this year because I also have surgery booked (for an unrelated problem) and need to get that over and done with first. Then I’ll go to this clinic and let you know all of the gory details. Maybe we’ll get some answers...

[SqueakMouse in reply to Munners]

Hello there, Munners😍❣️ I'm so so SO excited to "meet" you😋!...I think we have a lot in common, at least as far as our medical adventures go😉

I've had viral meningitis at least 4-6 times per year for the last five years (yep, you read that right😜; I've had it so many times that I've truly lost count, partly due to inflammation-induced memory loss, and partly due to the sheer number of cases, which sometimes results in a sense of them running all together😳), and occasionally up to four times per month (that's somewhere around 50 cases per year😳, because I've been getting weekly infusions of IVIG that I absolutely cannot forgo due to an immunodeficiency--but unfortunately I'm very sensitive to it, and develop aseptic meningitis after every single infusion😢) ; as a bonus, some of these bouts of meningitis have transformed into meningio-encephalitis, just as yours have😳--and as you know all too well from brutal personal experience, that particular form of meningitis is its own special breed of nightmare😋😉

After some twelve-plus years of illness without answers or cure, I was lucky enough to find one of those elusive "Dr. House" physicians (two of them, in fact😊), and the insight and treatment plans they had for me might prove really helpful to you as well, given how closely our cases mirror each other...at the very least, it might be an interesting read for you, since you're so intimately and heartbreakingly familiar with the subject matter😮😢😉

But I just noticed that this thread was started over a month ago, with the last and most recent reply being posted more than two weeks ago now--so before I started writing up the information, I thought I'd try to check in with you first to see if you were still watching this thread, in which case I'd be happy to post that information here once I finish typing it up, or to start a new thread if you think that's best (or I could private message you, or email you, or use whatever method of communication that is most comfortable and convenient for you😋).

I truly cannot WAIT to chat with you, fellow brain infection Kindred Spirit and medical miracle unicorn sister🦄💜🦄❣️❣️ (because we certainly are the rarest of rare beasts, aren't we☺️?--at least according to the overwhelming majority of physicians that we've encountered😉).

I've got all ten fingers and all ten toes tightly crossed in hopes that the fairies of the universe bring you news of this post, and that we're able to "meet" (in cyberspace, anyway😋😉) very very soon😍. Meanwhile, my thoughts and prayers are with you, and I'm hoping that you're in a relatively healthy and painless place in your ongoing VM/ME (Viral Meningitis/Meningio-Encephalitis) odyssey💜

Most sincere and very best wishes to you, and take good care💗😋💗!!

[bobdd in reply to Zenoosh]

I hear you , ive had it 3 times along with ensphalitis when I was about 12 yrs old , don't know if that has anything to do with it, but I totally know how you feel , living in sacramento ca. is not much different , no answers for why this keeps happening

[bobdd]

I have had it 3 times im 58 yrs old male, I had it about 25yrs ago 15yrs ago and just this last week , all 3 times I was hospitalized all 3 times the dreaded spinal tap ,mri. cat scan, ekg mollarets wasn't it I was told they have me on valacyclovir but still no direct answer on why this continues to happen. this last time it affected my vision, along with my head ready to blow, along with vomiting which almost makes you pass out , not to mention very hard to breath. so yes I understand what your going thru, just wish I had the answer for you and me