3 months on from viral meningitis - help required!!!

Hi everyone, I am 3 months on from viral meningitis. I was suddenly taken ill with off the scale headaches, photophobia, neck stiffness and thought my time had come! I was admitted to hospital for a week and pumped full of morphine, antibiotics and anti virals. Had a lumbar puncture and csf was confirmed as viral meningitis with the shingles virus that apparently is quite rare! I thought I was on the mend when I came home and went back to work after 3 weeks, but shorter hours! I still think I can do everything and lead the busy life I am used to - pretty non stop!!! I am 3 months on from leaving hospital and feel absolutely awful. I have no energy, to the point where I am just exhausted all the time - so much so that I feel like I hit a brick wall and have to go to bed. I was completely deaf in my left ear but I do have 1/4 hearing back now and am being reviewed by ENT for a hearing aid.

Just recently I have been experiencing numbness and tingling in my left arm and hand which is a new thing - has anyone experienced this? I have just had a brain scan and awaiting the results - although not sure what it will show. I would love any info or shared experiences from people who have suffered with the shingles form of viral meningitis and any light at the end of the tunnel! I feel I have gone so backwards and that because no-one can see inside your brain - they forget what a serious illness it is and how it impacts life and future! I feel I have hit a brick wall and gone downhill if anything - please give me some hope??? My concentration is poor and I can't bear a lot of noise, like tv on for too long. I do have regular 6 week appointments with a consultant in the serious infectious diseases clinic but all I keep getting told is it takes time and I have to be patient!!!!! Something I am not good at!!!!! Any help would be great, thank you xx

7 Replies

  • Hi, hopefully I can offer some hope. I'm now 13 years post near fatal VM triggered by the Herpes Zosta virus (the one that causes chickenpox and shingles) and like you I lived my life like someone had stuck a rocket up my backside and light it. Incidentally VM triggered by the HZ virus isn't rare but VM is still relatively rare, most doctors won't see a case in their career or if they do it's one or two. I had very similar symptoms to you and you have to remember you have suffered a brain injury and your doctors are absolutely right, you have to rest and listen to your body. If you don't it will at best slow down your recovery and at worst it could trigger the VM to come back again. It is terribly frustrating but believe me you are lucky to have doctors who understand VM and recognise that the recovery can be slow. Most people are told by their doctor that they should not be suffering any after effects and that viral meningitis is like flu and isn't serious. When you're head is banging like the drummer from Motorhead and you feel like you've been hit in the face with a plank being told that you're fine is at best irritating and at worst prone to send you nuts. That I to learn to walk again, couldn't string a sentence together and didn't know which of my daughter's were which didn't seem to have any effect on the doctors until I challenged them over it.

    Everybody's recovery from VM is different so it's difficult to say how yours will go but everybody I know on here reports improvement over time and speaking personally I have completed two half ironman triathlons (1.2 mile swim, 56 mile bike ride, 13.1 mile run) since 2012 and I'm doing my third one in August. I did though have to take 5 years off from strenuous exercise and got tired very quickly just moving forward in baby steps worked. I'm still left with some after effects (constant headache, mild photophobia and intolerances to alcohol and cocoa) but these are not life limiting and I have learned to work with them and around them rather than butt your head up against it and keep going regardless. i have written a blog about my experiences of VM for a few years now (https://healthunlocked.com/jonad724) so please have a look and I hope it helps you cope with what I, and a lot of other people here, have gone through. One of the things I do mention is that if you had a broken leg people will make allowances but as it's a brain injury they don't so you may have to get used to reminding people as gently as you can that you are not well and they do need to make allowances. It can be as frustrating for them as it is you because they want you to be the person you were before but it is something which can be overcome with, wait for it, patience.

    Being 13 years on I can tell you I'm fitter than ever (I'm off to swim 2K shortly after writing this and have been cycling 60 miles on a Saturday for the last three weeks) and even with Mollaret's (which is where the VM recurs when I get stressed) and so there is hope but it takes time and you'll need to accept that what you think of as normal may change. Hope this helps and if you want to please message me if you have any questions. Happy to help, cheers, Jonathan

  • Hi Jocassidy,

    I am sorry to hear that you are suffering with after effects from viral meningitis. 3 months is very early days as it can take 12 to 18 months to recover. I am 13 months post VM and I am still having severe headaches. I have been diagnosed with chronic locked in migraine. I had other complications which I have written about in previous postings on here. I am now feeling much better and fairly well except for the migraine. I also have tingling and numbness down my left arm and leg, my neurologist said it is called functional weakness caused by the constant headache. Where there is severe pain in one part of the body, another switches off. When my headache eases so does the numbness and it is expected to return to normal when we control the migraine.

    The best advise is to accept that the best treatment is to completely rest for as long as possible. In the first 6 months I couldn't watch TV, look at magazines, read etc. I still have trouble reading and listening to music but it is getting better. So all that you have reported is the norm for post VM , the trick is to accept that and go with it. Your brain has been inflamed and it takes a long time for it to recover. The sooner you realise this and completely rest, the better your recovery will be. I have tried to push through it and I am still struggling a year on.

    I totally understand how you feel, it is a tough illness but you are not on your own. Read the other postings on this site. I have written about supplements I take and green smoothies, these have really helped to boost my immunity and keep me healthy.

    Take care and best wishes. X

  • I understand completely, I too have had a PCR indicate I have had HZV causing my meningitis. My immune system is low with many of the normal IGG, IGM and other immunegoblins. I had tingling on the left side of my body and face. I have had a total of about 15 hospitalizations with over 30 LP's. My case has been ongoing since 1994. I take a antiviral medication daily and had to have IVg therapy weekly for over 3 months at 3000 dollars a week just for the medication. It has now been about 5 yrs since being hospitalized, but I have had episodes, which I have treated at home with pain med and acyclovir. I live daily in fear of the next episode. Best wishes, to this underappreciated and understood dx.

  • Hi Jocassidy,

    Welcome, and you’re not alone. I believe you’re describing the ‘Fug’. I just put a short post up on it which sounds much like how you may have been feeling recently. That’s kind of a typical 3 month feeling, and if you’re going back to work and it’s not working out for you, chances are you’ll go back to the Fug. (I only know this as I’ve been through there a bunch of times and it always has a door open for you, if you let it.) As others have/will say, your journey back to health will be at your own body’s and mind’s pace, but 3 months would be pretty fast by any standards to feel right as rain again. Bonkitty’s timelines are a good benchmark to look too I'd say for getting an even(ish) keel.

    More generally, though the number plate of my first VM truck was enterovirus, I know the HZ virus pretty well and it’s my current nemesis. Like Jonathan, I have Mollaret’s and this virus is the trigger, when I’m mentally exhausted. That said, I agree with Jonathan’s comment that it’s really VM that is rare, and no matter which virus gets you, the outcome is largely the same (and appears to be, dependent on your own personal circumstances more than the virus itself). Like you, I was a non-stop guy (as were many who blog on here) and the correlation between that lifestyle and the severity of ‘post viral syndrome’ that captures us is pretty sharp. It’s a pick and mix of the symptoms you describe, and some others, as we all have our flavour as the brain injuries we suffer vary to some extent.

    Please do heed Jonathan’s advice and listen to your body though. Hard to do, right? :-) For myself, most of the time my body had to listen to me. Well, karmically it may be time to reverse that and slow down to the point that you can listen. Not hear, but truly listen. If you’re going too fast, you’ll miss it (see repeat visits to the Fug above). In case it helps, this is an active process for myself and does not come naturally, but it sure is a good skill to acquire, if not critical.

    You have a journey of discovery ahead of you which is (as I heard very well described early this week), that VM is "life-changing, but not life-defining". Some of those changes will be for the better, eventually. See Jonathan’s post for the timeline, though in the short-term, for myself, I am 2 stone lighter, have stopped drinking, smoking and take each day as it comes. There are some losses along the way (some of which seem important at the time, but that passes once you move through the 5 stages of loss and 'acceptance' comes in), but the 'new normal' is a happy, if sometimes challenging place. Though, please find your way there slowly and be mindful that the more gently you place each brick of your recovery fondations, the longer they will support you. Recovery from brain injuries and building Rome are kind of similar. I do think the analogy stops there though!

    I’m not able to comment on the arm tingling though Bonkitty and others may be able to help. It’s not in my pix ‘n’ mix; I got arm spasms when I’m tired instead, which sound similar but is another beast entirely (but possibly also constant headache related).

    While it may not help much in one way, nothing you describe is off piste if that helps. That won’t make it feel any better physically but maybe our collective 'experience over hope' may provide some comfort for the journey back to the new You.

    I can say with confidence, if you take one day at a time and really work at resting (not passively, but with all your mindful, yet, calm, might), it’s less so downhill and brick-roads, and more a slowing roller-coaster with a few cul-de-sacs and bumps along the way.

    If you’d like a few pointers on what may help on the recovery road, feel free to check out a ‘way to change your life' post I did before [it was labelled Mollaret's meninigitis but you can ignore than bit], which I need to update soon. I've just got to get through this lastest Fug…

    Be strong, and hopefully you can wrestle the old You and go-go-go self to the floor with some real ‘me’ time. I’ve every confidence you deserve every moment of it! :-) Don't be a stranger to actively doing nothing with your brain. It'll be really grateful.

  • I got VM in 2012. I still get headaches,very tired when I push myself,hearing loss,vertigo,4 spinal taps,3 mri's,3 cat scans,2mra's. My 3 year anniversary is coming up in June. Things do get better and I was a Mess. Truth be Told !

  • I had VM in 2011 and thought I was doing ok - however over the past four years my body seem to be falling apart. I had the infection in my spine. I have recently been (this week) diagnosed with Cervical Myelopathy, which can be caused by a viral infection as well as can cause some of the symptoms you describe. When researching Cervical Myelopathy I can honestly say that I have been having the various symptoms over the past 4 years, been to my doctors various times complain of the different aches and pains, which was treated with recommendations of taking pain killers. As I can only take paracetamol, I had learnt to live with the pain. Read up on it see if anything else fits in then just ask to be referred for the test. Good luck and hope you begin to meant soon.

  • So sorry to hear of your experience. I too have a very similar experience. I first had a hospitalization in 1994, and after about 17 hospitalizations with my last hospitalization, in 2009. Multiple times in ICU. My symptoms were very much as you described. I understand exactly what you are saying. I continue to have the headaches, and all other symptoms of stiff neck, fatigue, back pain, numbness and tingling in left leg, arm, hand and face. I have hearing loss, especially in my left ear. I have been seen by multiple neurologist, and infectious diseases doctors, which I was told they had never had cared for any other patient with like symptoms. I had to work, as a single mother and it has been so difficult. Years with no vacation time as all vacation time was spent in hospitals or recovering at home. I worked in hospital management, so I would go to work with my PICC line and hang my acyclovir, while I sat at my desk and worked, or tried to work. I often spent weekends in bed from exhaustion and pain which always peaked by the weekend. However, since many doctors have no idea of what this is like, I got little to poor advice. I was told for years to take Advil at the doctors advice, which around 2006-2007 there was some literature, that this medication actually exacerbated the viral meningitis. I stopped taking the medication and since I have not had to be hospitalized. I now have to resort to control pain meds, at times, which leave you feeling like you are in a fog at best. I actually missed my daughters wedding as I was in the hospital with one of the repeated episodes. Finally, due to my low immune system, I placed on Immune-goblin therapy, which was extremely expensive, which meant an IV every week for 3 months. It was during this time, that I was not working, other than my work in obtaining a MPH degree, which allowed me to do research and study, as I was able, instead of having a scheduled hour by hour appointment. I believe due to both the Immune-therapy and ability to rest more than usual, discontinuation of Advil, I was able to better recover than any other time in my life after my first case was diagnosed. I am happy to say I have not been hospitalized since, but that doesn't mean I am symptom free. I have learned since how to back off, go to bed often, sometimes for a couple of days, stay on the acyclovir daily. I have learned to avoid, the sun, as that too will exacerbate the symptoms. Stress has also been a trigger, as I learned after several major stressful events, such as the death of my father, a divorce, I ended up being hospitalized, each time with high WBC in my CSF. Like Shingles, anytime you are under stress, or become weakened, shingles are likely, but for me, it is meningitis. I believe, you have to find what works for you. I know this sounds like something you didn't want to hear, but if only I had known this sooner, perhaps, I would have given more credit to my symptoms sooner, instead of pushing and ignoring what my body was trying to tell me, and I learned to avoid things I could avoid, instead of pushing forward and only making things so much worse. Sadly, I heard for years, ignore the symptoms. I was actually told, if you think of the pain, or tingling, or the stiff neck it will only get worse. I was told, (I believe because, others didn't believe me, that I was experiencing these symptoms), move on, get tough, don't let it get you down, be stronger than the symptoms. So when I did ignore the symptoms, I only got worse. Finally, I have learned I just cannot ignore these early signs of virus, rather, stop the pain before it gets to bad, don't push, lay down, take a day off, and recover in a couple of days which is better than pushing until, you find yourself in the Emergency Room with uncontrollable headaches, nausea/vomiting, confusion, and spinal taps which showed WBC's. Without the positive lab work, my symptoms feel on deaf ears, but why wait until that point to act. You have to learn to listen to your body, do what it is telling you, and understand others may not believe you, will often treat you as if you are making this up for attention, you don't want. I wish I knew something else to tell you. I found since this illness doesn't make a big mark on your forehead for others to see, since there are no outward rashes, or deformities, since many doctors have not seen this before, and since your family, friends, don't know of anyone else with this, therefore, it doesn't exist, is wrong!!!!!!!!!!!!!!!!!! It happens to be disease with little appreciation, or recognition. We cannot make our Spinal fluids produce the WBC's, our heads, neck, back to ache, it is real. We have to be strong, strong enough to do know, it is real, and we have to ignore those who tell us to ignore the symptoms and just get over it.

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