Hello, I’m Denise and and I first was hospitalized with viral meningitis in March 2014. I was in the ICU for 2 days and then moved to a regular room for another 3 days and thEn sent home. I was still experiencing all the symptoms but went home and returned to work a few days later. I was hospitalized two more times (May and June) for positive viral meningitis. Seven spinal taps later and still living in pain I was sent home again. After getting out of the hospital I made an appointment with one of the top Neurologists in my area. He did another spinal tap and it was clear so he proceeded to treat my after effects like it was a migraine. He would not listen to me about all the other symptoms such as extreme fatigue, insomnia, vision disruption, photophobia, sensitivity to noise, heat, general weakness, neck pain, memory loss, the list goes on and on. He put me on steroids, then Botox, topamax, gabapentin, a whole bunch of different “migraine” medications, nerve blocks and nothing worked. After 2 years he just gave up and I was left to find another doctor. So I decided to look for a neurologist in NYC and found one but she was booked 6 months out so they scheduled me with her colleague which I still had to wait 3 months to see. I went to see her, explained the entire situation and she thought I might have hemicrania continua and wanted me to take indomethacin but I am allergic to NSAIDs so I couldn’t take it and she basically told me she couldn’t do anything. These neurologists are supposed to be the best in their fields and they just give up. I then went to a pain management doctor who did multiple nerve blocks and even radiofrequency ablation. None of it worked. During all this time I had to take extensive time off work due to the debilitating effects which was financially hard and also stressful. Last fall I went to my third neurologist. He actually admitted he had never had a case like this but diagnosed me with post meningeal syndrome (I had been diagnosed previously with chronic meningitis by my first neurologist) and suggested medical marijuana. Medical marijuana is fairly new in NY and you can only take drops or vape. It’s also very expensive. I have been on MM since th end of April and I have had to try several different ratios of thc / cbd and still 2 months later I am in the same pain I have been in for 4 years. People don’t understand because it is an “invisible disease” and they look at you and think you look fine when inside you’re dealing with excruciating pain, fatigue, memory loss, brain fog, muscle weakness and the loneliness and depression that results from isolating yourself from the world to avoid making your symptoms worse.
Has anyone had this type of experience and if so have you found anything that works? I am only 43 years old and I feel like my life was taken from me and I just want to be my normal self again. Thank you.
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fixie2
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Your comment and experience so far epitomizes the frustration so many of us have to endure by imagining that neurologists have some understanding of post meningitis symptoms and then discovering after much pain and distress that they really haven't a clue. After numerous visits and consultations, my own neurologist at least had the honesty and humility to come clean and admit he had no understanding of what was going on. Both he and the hospital neurologist ending up diagnosing migraines. The consultants in hospital wrongly diagnosed a mini stroke and the saga goes on. After the first 14 months of constant dizziness and headaches an ENT consultant wrongly diagnosed BPPV and I was treated with Epley and Semont maneuvers which made the dizziness far, far worse. Eventually the head of the hospital's audiology department had the wit to carry out a videonystagmography test with further caloric tests which confirmed the virus that caused the meningitis had completely destroyed the vestibular (balance nerve) on my left hand side. There is no cure for this, just vestibular rehabilitation exercises to try and enable you to cope with the constant problem. I still suffer all the other symptoms everyone seems to mention but am now resigned to the fact that the medical profession is next to useless in trying to help. I now believe it's better to give them all a miss as they clearly have no idea of what they are doing. I am not going to allow any of them now to increase my frustration by staring blankly at me and telling me it's probably migraines. Shame on the whole lot of them.
Hi there, I had viral meningitis three years ago. My symptoms wore off after a few months after leaving hospital but I was left with a tingling sensation down my arm to my thumb. A year ago stress in my personal life led to this tingling be coming excruciating pain in my upper arm. Nothing could help. A scan revealed a hernia in my neck was pressing on the nerve, I wonder whether from the swelling in my meninges there? Anyway, after three months of searching without any relief I found a cure which avoided surgery. I went to see a kinesioligist who as if by magic flushed out negative emotions, in my case abandonment and desertion, I had a proper cry and it was all over in 30 mins! I know this sounds crazy but a year later the pain has never returned, touch wood. I still panic a bit when I feel my thumb tingle and my arm feels tight but I've never felt pain since. I don't know if this will work for you but keep searching and don't give up hope that you can be free of pain. George.
Hi I had cm 2 years in a row it sounds like you went too fast you should have not have been lifting heavy thing or stairs and walking on flat ground try listening to your body if it hurts stop . This should have been done the first 6 to 8 week good luck helpman
I'm very sad to read your message. I am one month exactly into my experience and journey and have the same symptoms you describe. Even typing is so frustrating for me as I can no longer spell and my fingers type things I don't want. I already have given up on doctors as I know I will go through the exact same thing you are experiencing, and, to the rest of the world (friends, family), without a definitive diagnosis from the doctor, I am just a hypochondriac or nut case.
Hi Denise. I also had VM in March 2014 and all the problems you mentioned which finally cleared this April. What helped me was:
Decibel reducing ear plugs for noisy places. I am now going to rock concerts again!
Night driving anti glare glasses for light intolerance .
I stopped taking all pain killers even though I had chronic migraine and found that it made no difference to the pain but I felt so much better for not taking them. I did take propanalol but have no need for it now.
I have had Botox every 3 months for 2 years and then I applied the principle of Botox that it tells the brain there isn’t any pain so the brain remembers that. So when I got migraine I told myself I hadn’t got any pain and focussed on things around me or on what I was doing. I found this more helpful than pain killers. I also had physio to my neck, jaw and shoulders and this has stopped the migraine altogether. Once the migraine stopped all the other symptoms stopped too including fatigue.
I am now back to a good level of fitness and I climbed Mount Ben Nevis recently.
That’s what I did. I built my activity level up, rested more than before, reduced stress and jaw clenching which was feeding the migraine and told myself that I was ok rather than anticipating pain.. it took a bit of practice. I now go to work, climb, swim, go on long and strenuous walks and have claimed my life back. I swear by a healthy veg rich diet and little alcohol and all is coming good .
Definitely fixie2. And I am only 21. I live in Greece and the doctors have no idea about meningitis. Some of the doctors would disregard admission because "If she had meningitis she would probably be dead right now" she must be kidding us. Completely stupid people, not to mention dangerous!! I am 8 months post "possible" vm and I feel terrible. Most days are painfull but nobody seems to understand. Everyone thinks I am depressed.. frustration!!
Huge hugs. No wise words but I am 43 too and empathise totally with your symptom list, along with social anxiety and issues eating a lot of food types.
I've been on pregabalin but that seems to have worsened the fatigue. I've had some fatigue improvement from coming off it and boosting my iron and omega and b12 levels. But a year on and I feel a shadow of my old self xx
Hello, You can find my 28 year old daughter, Rosie S' Story, via the link on the forum stories from the home page.
We found that cranial massage worked wonders for her. Her job is working with horses on pretty much a daily basis and is very physically demanding.
It is rare for a story to be so positive and we have tried to let people know that this amazing complementary therapy worked for her. It helps release the spinal fluid which VM leaves a blockage for. Rosie is pretty much cured after around 10 sessions coupled with actupuncture, although found awesome relief after only one appointment. She is now free of all pain killers and antidepressants and feels right back to her old self.
We can only let you know what worked for her. It's not for all, but has now given amazing relief for many. It seems the success could be to do with the skill of the cranial osteopath you use. So it is important to find out the osteopaths credentials and experience in this specialised field particularly dealing with VM sufferers, if you can. (Not all osteopaths realise that this helps VM sufferers, it is often carried out on young babies with birthing problems). You need an osteopath and not a therapist who mearly has some training in cranial massage.
If you find you are getting the violent headaches and feeling lethargic and depressed after a few weeks, give this complementary therapy a go, it really could be worth it and save you being on prescribed drugs, along with months, years, of unnecessary suffering.
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