Post viral meningitis - collapses

Hi, It's my first time on this forum! Steve from meningitis support gave me the details and I'm looking for help / advice / people with same issues as mine previously or dealing with it?

I contracted viral meningitis in Jan 2015! I felt funny on the Sunday and on Monday woke with a immense headache which got worse then the dizziness and photosensitivity came and I some how managed to waddle to boots for advice on my lunch hour - they thought it was a migrane but then I collapsed - basically my body went really heavy and I couldn't stand or open my eyes or move, they called for an ambulance and I was taken in and by that point I had a neck ache too! I was finally given a lumbar puncture 2 days later and was initially treated for bacterial meningitis then they realised it was viral and I was released! It took me 4 months before I went back to work and then on a phased return - the first Saturday I had to do and actually see customers ( I work in a bank) I was serving a customer and the shooting pains started and then dizziness and photosensitivity and then my whole body went weak again, could only just whisper, couldn't open my eyes and I couldn't move so off to hospital I went again and stayed over night they said it was aftermath of VM and that I had done too much! I went to a private neurologist a couple of days later and was given another lumbar picture which showed VM had gone and she put me on pregabalim. I had 2 CT scans over this time and both ok! I finally went back to work end of July on phased return and been Doing that since then and although ive had extreme fatigue and some shooting pain headaches I've been working through it and getting stronger day by day! This was until last week, I completed my first week on full 9-5hrs and I got to Thursday and i was fully back in to full stressful work and I got a headache and then the shooting pains started now and then then the photosensitivity - why I didn't stop and have a break - there was no one to take over we were short staffed and it was lunchtime! So I powered on and then a customer came in and I couldn't read his paperwork and I started to cry and I went into another room then I got the dizziness then the collapse!! I fell of the chair at work on to the floor and stayed that way until the ambulance got there! I couldn't breathe as my hair (long and thick) was covering my face. I was taken to hospital and released 7+hours later when I could walk again! Again the left hand side of my body took longer to come back! I couldn't speak for an hour and I couldn't move my arms for at least 3hrs as they kept dropping off my chest and i couldn't left them back up it took 7hrs for all feeling to come back and Hospital has no idea why this has happened and think it's related to me doing too much and the viral meningitis! Steve has said he has heard of others having "echos" like this has Anyone else experienced these collapses and weaknesses?? I could really do with some help! I'm so scared when the next one will come on! I'm back to being so fatigued I can hardly do anything and I'm not back at work yet but planning to next week! If I do too much the dizziness and shooting pains come on? Anything any one can help with? GPs are usuall they keep shrugging shoulders saying they don't know what's wrong! Thanks in advance !

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  • What do you mean by "shooting pains?" Was the pain constant and so extreme that you screamed aloud? Was the pain from the top of your legs down to the tips of your toes?

  • Shooting pains in my head - sorry! Their severe enough for me to say ouch and hold my head but not to scream out loud!

  • I was diagnosed with VM in 1990 and experienced left-sided paralysis, pain and dizziness for some years. Even now I still have facial paralysis and pain which has been diagnosed as neuralgia. I was living in Germany during the first few years after VM and found the understanding and care a lot better than here. My eldest daughter was diagnosed with VM in June 2014 and still has really bad headaches every day as well as numbness and tingling in her arms and hands. She too has had CT scans and lumbar punctures which shows that she is free from VM but she has a high white cell count which they can't account for. I got great help from my local pain clinic which really helps (was on pregablin and other high dose pain meds but no more). I'm also on a low dose of amitriptyline which I take at night. My daughter has been put on medication which is usually used for epilepsy. I hope you feel better soon x

  • Thank you for replying and sharing yours and your daughters experiences! Hope she gets better soon and it's nice to know I'm not alone!

  • It was and always is my left side which seems to be affected with every episode or reoccurring meningitis event I have had. I have had multiple hospitalizations with confirmed elevated WBC in the spinal fluid. Sadly the doctors don't seem to want to understand this disease. I am currently trying to fight off another attack by increasing my acyclovir and resting as much as possible.

  • I'm so sorry to hear of your troubles. You seem to have it worse than me! No ones mentioned high white blood count to me, or a check for herpes - I do get cold sores tho? It is extremely frustrating the doctor had said if I'm not better on the pregabalim then she will swap it with ackiloyr! I've found meningitis support team really helpful but I assume you have spoken to them? They have insider knowledge that these doctors just don't have! I really hope u get better soon ! U are not alone and it's certainly not in your head x

  • Cold sores are caused by herpes simplex 1

  • I was first sick in 1994 and like you continue to have multiple episodes, which the physicians all but accuse me of making up-- however I cannot fake the high WBC in the spinal fluid so they just say nothing-- so good to know I am not completely alone having this thing for so long.

  • Hi, I'm so sorry to read of your troubles, and felt I had to reply to let you know that you are not alone - I really can empathise with you, the symptoms you describe happened to me when I pushed myself too much (physically or mentally). You need to listen to your body & try & pace yourself as much as you can (easier said than done!) - you are still quite early on in your recovery, you've suffered from a serious illness which takes time to get over & to try & adapt to a slower pace for the time being.

    I had viral meningitis followed by encephalitis 4 years ago, & have learned to pace myself & be grateful for what I can do & not what I can't (which of course can be difficult at times). By living like this & doing a bit more when I can the recovery has come on well & I don't mean to alarm you BUT last month coming up to my 4th anniversary I decided enough was enough I needed to put this behind me & pushed myself too hard thinking "no pain no gain" & tried to completely get my old life back- big mistake- I crashed & am now again going through what you describe...apparently it's neurological fatigue (similar to ME but worse), was told brain has suffered an injury (as has yours) and if you over exercise something that's injured you will suffer the consequences, so I need to listed to my own advice & pace, get as much rest as possible to allow recovery (again)!

    An interesting read to put it into lay mans terms, google "A letter from your brain", some of it isn't relevant but it's really good & explains some of this.

    Take care, look after your self & I hope you soon start to feel an improvement.

    Xx

  • Thank you so much for sharing! So sorry to hear of the relapse! I will have a Google of what you said in your post! Thanks so much again and I will rest as much as I can and listen to what my brain and body is telling me! Thanks again

  • Your welcomešŸ˜€ ( & sorry if I'm confusing you as I've just changed my username on here!). Hope you feel better soon, & thanks xx

  • Thanks again for the post I've read the letter - it was very apt and i could relate to it! I'm struggling to find neurological fatigue on Google I can find chronic fatigue etc but not what u said - do u have any useful websites you use? Also do the doctors think the collapses were / are due to the VM or enciphiliatis ?

    Thanks

  • Thank you so much for ur comments, it really helps.

  • Hi, this offers a good explanation:-

    braininjury-explanation.com...

    (Sorry not sure how to send a hypo link)

    Mine is due to the encephalitis but there is a very fine line between VM (inflammation of the lining of the brain) & Encephalitis (inflammation of the brain itself). I would imagine that there could well be many cases of severe VM that actually have undiagnosed Encephalitis (I left hospital believing for almost a year that it was severe VM, then when I told neurologist I was struggling to get over VM he said casually "your main issues are related to your Encephalitis"-I had no idea until then, then it all started to make more sense).

    As well as Meningitis Now, The Encephalitis Society has loads of information etc.

    Sorry I've rambled on a bit, my understanding is that neuro fatigue is very similar to ME/CFS but that it's actually caused by an acquired brain injury(neurological injury)...was told this by support line of Encephalitis society.

    Hope I haven't confused you more & happy researching!!xx

  • Thanks so much you've been amazing! I'm going to a neurologist tomorrow so I'll go armed with this info thanks

  • Glad to help. If possible could you please let me know either on this or as a message how you got on & what he thought of the information etc as it could be useful for me also. Thanks & best wishes xx

  • Hi, she said I didn't have what u had the enciphiliatis , thank goodness! And that with neurology sometimes the just don't know why you have these issues and she can only treat it symptomatically ! So she's putting my pregabalim up! She said from the tests I had last time there wasn't anything sinister And just hopefully the meds will work! Thanks again x

  • Glad there was nothing sinister or encephalitis . Hope the pregablin works for you & that you get some relief. Best wishes xx

  • Was diagnosis on a several of my hospitalizations for VM to also have encephalitis. During one of my hospitalizations, I was ordered to have an angiogram of the brain, this is where they injected dye and monitored it via x-ray as the blood flow took it around the brain. They found there was swelling on the brain's right side, which they stated is why my left side was numb and tingled. I started to have a reaction to the dye or procedure, so they cut the test short, and started giving me I meds to counter-act the dye. However, never advised me to take it easy and I usually returned to work within days after discharge. Each reoccurrence seemed to be worse. Now I don't go to the doctor and try to manage at home with rest, bed, pain med, and acyclovir increased dose's.

  • So Sorry to hear about all your symptoms. I am a 59 yr old female & was diagnosed with VM in Jul 2013. I was a very healthy person. Since then I've had vision, focusing , head pressure , & other medical issues , including 2 falls which led me to surgery for a torn meniscus. I woke with oxygen on & was advised that I stopped breathing after the surgery. 3 months post surgery, I still have lingering complications from the anesthesia . I'm just starting to get some clarity in focusing, but my personality def was compromised. I cannot return to work. I continue to exercise , eat healthy , & def try to reduce my stress level as much as possible . This helps. I have a very stressful position & now unfortunately will need to take an unplanned early retirement.

    Take your symptoms serious & be very good to yourself, I don't think anyone really understands how debilitating this disease is unless they have contracted it.

    Power of prayer helps me to b strong & persevere every day!

    Will keep u in my prayers!!

  • Thank you so much - I will keep you in my prayers also! Thanks for sharing x

  • I too am being forced into early retirement, and I hate it since I loved my work. Ironically, it was in healthcare administration. But no one understands this condition. I have days were the headaches, come and neck and back stiffness develops, and on these days, I cannot think clearly, I search for words I know. I also cannot focus as I know I should. You stated your personality changed. Do you mind sharing about the changes. I have had people tell me, I changed, but I am not sure how. I know with the pain, I might be more intense, and short with people.

  • Hi, I'm sorry I didn't have a personality change. I hope you can find someone to help!

  • Sorry, just getting back to you. Yes, I always was very patient before VM & I'm def no longer that way. Cannot handle a lot of loudness, chaos , or stress . I still have tremors if I try to resume my normal pace. I know I'm different, I feel it. Get adjitated very easily. Trying to eat healthy, Yoga helps also, Def lots of sleep helps. Trying to adapt to the new me & it's not always easy!! One day at a time also helps! Will keep you in my prayers!!! Good luck

  • I know exactly what you are saying. I have had multiple hospitalizations with spinal taps showing high WBC as well as blood test showing elevated WBC. I have had PCR test on the spinal fluid showing a herpes virus-- I have a history of herpes zoster, (chicken-pox), and a diagnosis of Mollaretts Miningitis. Ur symptoms sound so much like mine. I just made a post as well if u are interested. I am so frustrated with doctors not understanding this disease.

  • I contracted bacterial meningitis 8years ago. I too returned to work 3 months later. That didn't last long. The confusion and foggy feeling as though everything was surreal. The headaches, extreme fatigue and muscle weakness. Poor balance and falls. That stuff had never left me. I also have fainting spells. The doctors look at me like I'm making something out of nothing. Or they never let me finish what I want to say. Telling me that they can only deal with so much at a time. "Save some for your next visit", By then I'm not even sure what I have and havent said to them. It's like I'm going for the first time. My time sequencing is thrown off. I may intelligently know something happened at a specific time but can't wrap my head around the fact that it feels like it happened much earlier. Folks tell me I talk about the meningitis too much, especially since it happened 8 years ago but it truly feels like yesterday. Don't mean to worry you but just know you will have to really get inventive to get a doctor to listen. I read a post that said she showed her doctor some of these posts for meningitis now. They don't seem to know much about it. Well I've babbled enough so take care and please lets follow each other and communicate. Best of luck.

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