Has any sufferers of VM had any success from seeing a neurologist?

At 10 months post VM I am still suffering from severe crushing head pain which feels like the membranes are in spasm. Also experiencing fatigue but not sure if that is due to Amitriptyline but if I reduce the dosage I crash I to a painful relapse putting me in bed with the pain. Only keeping very still eases the pain. I have tried all sorts of advise and remedies but each time I try to do light exercise, eg dog walking, or easy general living activities I crash into a relapse. The crushing of the membranes have dislocated my spine and neck which is causing further problems.

I have a GP appointment tomorrow but I will be saying the same things I have said for 10 months and I don't know what to do next. I wanted to return to work but it is I possible at the moment.

I wondered if anyone had seen a neurologist and had a successful outcome.

Thanks x

13 Replies

  • Hi Bonkitty.

    I think that many medical professionals unfortunately don't understand meningitis and by what people post on here VM is often met with the opinion that you recover from it with no long term effects. However, it is now recognised by research by Meningitis Organisations that some VM sufferers do have long term adverse effects. Personally I would say it is down to luck as to whether the opinion of the Neurologist you get to referred to is understanding and receptive of the adverse effects of Meningitis. I had Bacterial Meningitis and have been left with frontal brain injury (dysexecutive syndrome), Memory problems, mood lability, balance problems etc but my Neurologist wanted no conversation about any of that and refused to answer my questions about the brain injury and lesions even though it has been confirmed by MRI scans, EEG and Neuro Psych testing. He saw me for an annual review in December and because it was 3 yrs on (and even though the risk is there for me to have complex partial seizures) as I hadn't had any fits since the sub clinical fits when I was ill, and as off any Meds, he discharged me within 2 minutes of the apt telling me he had no time in clinic for any questions and disregarding the BI. I left distressed, confused as to who do I get my answers from and in tears. I am not suggesting that that will be your experience as you could find your Neurologist extremely helpful as some people on here have. But you need to be aware you may not get the helpful response that you need as I know I am also not alone in coming across dismissive specialists!

    Best wishes

  • Thank you for your reply Strawberrycream. That is pretty much what I thought. My hospital consultant told me that I didn't have headache when I was in hospital and the light didn't hurt my eyes! He also said I was fit to go from Uk to New York on holiday a week after leaving hospital as the virus had gone! So I am not too hopeful.

    I was once a neuro nurse and I hardly ever came across meningitis as mostly it was children or teenagers who contracted it and they went to paediatrics. Most adults I met got meningitis secondary to brain surgery so I thing the after effects got caught up in other neuro problems. So I wonder if this is why not so much is known about the after effects as they are more prevalent once the patient has left hospital My GP has been fantastic though so I do feel cared for by him.

    Best wishes x

  • They told me it was depression. I told them no it isn't. The lights are killing me and I was an electrician before VM. Lol Neurologist and scans showed nothing. Absolutely zero.

  • I have similar post VM headach issues. I nearly crashed my car on 25mg amitryp..

    I hope you find relief. I had moderate success with my neurologist. After many tests and drugs my neurologist diagnosed "you have headaches" .. However, after 5+ years (of many drugs and other things) i've found the only drug that works for me, with the help of my neurologist's PA, who is worth 3 neurologists imho. (Lamictal, only brand, no generic)

    What ive learned is that it might be a long or a short road. There is something out there that wiil work for you, drugs or acupuncture or meditation or more drugs or moving to mexico. Its a bizarre thing, but I hope you find relief, try anything, dont give up :)

  • Hi I'm 2 years post vm. I'm having fab results with beta blockers and ampitryptaline 50 mg a night. I have 2 neurologists and a headache professor specialist clinic and it's working. Keep dr shopping till u find a head pain specialist.

  • Sorry to hear your head pain has been so bad. I was prone to migraines before I came down with viral men last July. I was an urgent referal from hospital to see a neurologist abt my migraines. I finally saw one Christmas week!! He told me from looking at my ct scan/lumbar puncture that I'd had a bad case of v meningitis and said if I'd been prone to migraines before it was very common that they'd be worse afterwards!! He said he'd write to my doctor with a treatment plan which she's still to receive!! I had a dreadful run of awful daily migraines a few weeks back & phoned my doctor in desperation. She immediately put me on a 5 day course of steroids (predisinone I think it was called). I came off all other tablets for this time & it def helped calm things down a bit. I still get awful pain fairly frequently but not daily as it was before. I was on a daily tablet of topiramate to reduce the frequency & intensity of my migraines. My doc changed this to amitriptaline which I'm not as happy on as I can hardly get out of bed in the morning and I'm only on 10g! I really feel it is trial and error with this. Keep trying diff tablets until you find some that work best for you. I also go to a great Lady every 3 weeks. She does a thorough neck & shoulder massage and I can feel the knots (pressure points) in my neck and shoulders pop as she works on them. Pre meningitis she would have left me migraine free for up to 3 weeks but now it's not as long and I still have some but def much reduced so she's worth her wait in gold!

    My friend (who has dreadful migraines) has had great success by attending a specialist private migraine clinic. She had to go twice a week initially and now only has to go once every 5/6 weeks. The lady found the source of her migraines and it sounds like she does gentle manipulation to an area at the top of her neck. She is now only having maybe 1 or 2 migraines at most in 5/6 week period and is off all medication!! She says it has completely changed her life. Maybe there would be something like this in your area? I'm def going to try it when i'm stronger. I have what my doctor calls post viral chronic fatigue as a result of the meningitis. I can only be on my feet for short periods of time before I get dreadfully sore (muscle & joint ache) and tired. I spend a lot of time still resting. Anyway I really empathise with your dreadful head pain and I hope you find something that gives you long term relief soon. Take care x

  • Hi JuanitaMorrow,

    Thank you for you reply. It really is awful that we are having these problems. I never suffered from regular headaches or migraine prior to VM, only occasionally. The pain I am having is definitely not migraine or a usual headache but more of a crushing which feels like the membranes are in spasm. My chiropractor manipulates my cranium and neck weekly and this helps but when a relapse takes hold, I can only keep still until the crushing stops. Then the inside of my head feels like a rubrics cube as if everything is moving and my brain feels bruised.

    So I shall see what my GP says today.

    Best wishes. X

  • Thank you so much to everyone who replied. It is wonderful to know that there is a community of us who understand this condition.

    Best wishes to all. X

  • Dear bonkitty, how are you going now? Have you visited a neuro yet? I'm having my ninth day of straight migraines, despite the beta blockers and endep, so clearly the road continues hey! I hope you are having some days of relief and stay in touch.

  • Had VM in august and prior to this never really suffered with headaches other than a few slight run of the mill ones. Since the VM, constant migraines with at best perhaps a day or two tops a week without. Saw a neurologist just before Christmas and he was brilliant and though he couldn't conclusively say linked to VM but also couldn't say no. Prescribed preventative treatment of toprimate (topamax) which I gradually increased for a month upto a daily dosage of 100mg taken in 2 x 50 mg day and night. I have been on this dosage for a month now. There are side effects but these at the moment out way the option of not being on and having the constant chronic migraine. I have just been able to try going back to work to work which without them I could not have done. I am being monitored so I will see. Now it just seems to be a balancing act. I know that if I can't cope with the side effects then it will be a gradually reduce to come off and try another which may not also work.

  • Hi Claudeminh and her monster,

    Claudeminh I replied via email as I couldn't access this site at the time so I hope you got it.

    I didn't get referred to a neurologist as my over-riding problems are the multiple dislocations of my face, jaw, neck and spine. These seem to be causing much of my head pain which then agitates the membranes so giving me th crushing headaches. My chiropractor manipulated my face and cranium this week which has helped with the vertigo and so far has helped to stabilise my spine ( only been a day though).

    My GP put me on Gabepentin and Amitriptyline which seem to help the pain and allow me to sleep well.

    So at the moment I am worse before it gets better. Determined to keep chirpy though as my whacky sense of humour seems to be getting me through this non life.

    Hope you are all seeing some improvement.

    Best wishes. X

  • To all my forum friends, my GP is referring me to a neurologist as no improvement in my condition. Hope to get some answers.

    Hope you are all doing well.


  • I have never personally had success with a Neuro. They never had any interest connecting my symptoms to VM. Unfortunately, it sounds like you need to listen to your body and take it easier when your symptoms start to act up. I know its very frustrating but the biggest healer of post Men symptoms is time and letting your brain heal-which it does for the most part while you are asleep. I am 14 years post VM. It took 10 years before my recurring crushing VM like headaches finally totally ceased.

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