I am now 2 years post bacteria meningitis. I have lost most of my hearing and balance and have a fuzzy head, which has not improved. This last year I have had leg jerking, which has recently been diagnosed by a second neurologist as Functional Gait Disorder. He has referred me to a specialist vestibular physiotherapist who I’m told might improve my balance and head fuzziness. I am hopeful for any improvement and continue searching for answers. I also function very badly in the dark and will fall if I am not supported or have a bright torch showing the way.
Has anyone else got or had similar symptoms? It is extremely difficult to remain positive all the time and I am struggling to cope with all this. I will soon be embarking on a course of councelling to help. Has anyone gone through this process and did it help you at all?
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hawkeye777
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Sounds familiar, symptoms that nobody can get to the bottom of. Functional Gait Disorder is a new one. Someone else said Fibromyalgia. Irritable Leg Syndrome is what has been mentioned for me. Everybody you see is sympathetic but nobody seems to have any answer. “”It’s complex, it’s complicated”. Damage to nerves. Very dispiriting. Antidepressants prescribed to make you feel better about it. Didn’t work. Seems like there is a multitude of symptoms that nobody has any idea how to treat or cure. Acupuncture is the next for me.
You’re absolutely right and thanks for your thoughts. I hope acupuncture helps you and I’ll keep that one in mind. Would you mind letting me know how you get on with your acupuncture please? I’ve been trying to leave no stone unturned in my quest for improvement and answers but am running out of stones to turn over. Thanks again.
I can also relate to fuzzy head, have that now and from time to time. Jerking legs too. I have violent spasms which are quite frightening. Seems we all have damage to nerves in our body and all suffer in different ways. I am also deaf, immobile and wheelchair bound with impaired eyesight. Nearly 17 months since attack and have been re-admitted to hospital. Had an MRI scan yesterday as neurologist wants to see what has happened to my spine since the attack. The discomfort I was in made it not feasible to stay at home. Haven’t started acupuncture yet. But will do if I get home. Will keep you posted.
Good luck with your recovery and sorry to hear you’re now in hospital, not at all what you want. I hope acupuncture helps you and would be most interested to learn how you get on with it.
I am close to 1.5 yrs post cryptococcal meningitis diagnosis and it took all hearing pretty much from the start. Also destroyed my balance/coordination, sense of taste/smell, memory, etc. My body responded well to treatment and that combined with my optimistic outlook and diehard determination has brought my system closer to 'normal' than many thought was possible. I still have balance mishaps, but I easily correct them in the process and it's as if my body learns from those issues and improves. The brain fog feeling can happen now/then, but I just take a few deep breaths, focus on the task at hand and make it happen. At first my movement in darkness was freaky as with no hearing to help balance it's all on the eyes really. It has improved as well and even though I likely won't be as 'normal' before this hit me I am far ahead of the bedridden/barely existing state I was in when this fungus really hit hard. I am OK with that and now just living day by day to make the best of it. Apparently I am an inspiration to many so if that helps even one person push harder to get better/stay alive longer then it's all good.
Yes, all very familiar! I contracted VM in 2016 and suffered from constant dizziness and complete loss of balance and many other symptoms including hearing and vision problems. It took the medics a long time to arrive at a correct diagnosis. The vestibular system is what we rely upon for our balance and when this is injured or inflamed from illness or infection it can have quite devastating effects. The most common complaints seem to be vestibular neuritis and labyrinthitis both of which can take many weeks or months to recover. In my own case the virus that caused the VM had completely destroyed the vestibular nerve on my left hand side. This meant I found it very difficult to walk at all and was constantly dizzy. In fact it took 6 months after leaving hospital to learn to walk just a few paces. Walking in the dark or on even surfaces was virtually impossible. When our vestibular (balance) system is not functioning properly we rely totally on our vision for proprioception which is why walking in the dark is so difficult. Vestibular suppressants should be avoided except for the initial acute stage and so should antidepressants which just slow recovery. The only thing that does help is vestibular rehabilitation therapy, exercises basically. I found a private physio who was experienced in this. It's a slow old process of doggedly sticking to a regimented routine of gaze stabilization and balance control exercises at least three times a day. I did this for 12 weeks initially and then another 24 weeks every day. I found very little improvement initially but very slowly there was a gradual improvement. I can now walk in a reasonable straight line without staggering and weaving like an old drunk and the constant dizziness and brain fog has decreased a fair bit. Walking in the dark is still a problem and I'm still working on that! For me the key was not to lose faith and give up, if you do this you can end up more and more imobile. Best wishes and good luck with your recovery.
Thank you for sharing your thoughts and experience. I knew I was not alone in my symptoms but you are the first to share most of them. Your comments are appreciated and I shall try and remain positive. Good luck with your recovery also.
Vestibular rehabilitation by a physiotherapist really improved my balance & functioning in the dark when I had bacterial meningitis 3 years ago. She told me that the exercises would make me feel bad at first but I persisted with them every day. The regime was that she gave me a set of exercises, for the first week I tried to do them but felt really unwell & had to sleep after doing them, but by week two I could manage them without too much grief. Week three she would give me more challenging exercises & the cycle was repeated. My husband was brilliant and supported me throughout so I was confident that if I fell he would catch me e.g. if I was standing on a cushion with my eyes closed which was one of the exercises! We also went out every evening in the dark and practiced walking, not caring what other people thought as I weaved my way in a drunken fashion! I am now independent - not perfect but happy.
I will be seeing a specialist vestibular therapist again in May (earliest time) so I look forward to seeing improvement with hard work and persistence. Your comments have helped renew my belief that there are people out there who can help in some way and make the quality of our lives better. Practising walking in the dark is something I’ve avoided because it is so bad but I think that’s worth reviewing after your efforts.
Thanks again and best wishes for your further recovery.
I am 1 year post bacterial meningitis. I saw a psychologist who helped me with depression and frustration. She helped me learn meditation to calm myself and help with pain. She also had me keep a journal, I recorded frustration and triumphs. I hope the vestibular training helps you, I've read about it being very beneficial. I am an RN , now disabled. I read a lot about meningitis.
Thank you for sharing your experience. I like the idea of meditation and will investigate that further. I finished vestibular therapy 15 months ago which helped restore some balance and stopped as I’d plateaued. I’m hoping that the forthcoming vestibular specialist will be able to help with my fuzzy head and leg jerks. Good luck with your recovery and thanks again.
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