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Meningitis Now
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Meningitis after effects: 'It's all in our heads'

The extraordinary range of after effects from meningitis are for some of us far more difficult to cope with and accept than the initial onset of the illness itself. When the promised recovery of 'a few weeks' fails to materialise and when these weeks turn into months and we are still suffering from some very troubling and debilitating symptoms we eventually get to see a neurologist for an examination and assessment. Being fair to neurologists it is in most cases virtually impossible for them to hazard a guess as to what is still causing these symptoms. Patients who are suffering in this way who are unable to resume their normal lives are naturally going to be very anxious about what the future holds. It goes without saying that some form of depression will take hold eventually particularly when the medical profession cannot supply any answers. And so here we have it! The answer all neurologists are looking for. Anxiety and depression is our problem and this is what is inhibiting our recovery; it's all in our heads! Their answer is to prescribe a standard selection of psychotropic drugs. Although they won't cure the lingering after effects the idea seems to be that they will make us so relaxed and spaced out that we'll no longer worry so much thus leaving the neurologists free to concentrate on 'more serious' cases.

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How much time it will take to cure from dizziness.

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Mine took a about two months to go may be longer. I am six months post punacoccal menegitas and have only started ack to work on a phase return had to take more time off due to picking up a viras ear infection and shingles but hope fully I will now start to get my life back hope you have a speedy recovery x

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Depending on the type and cause of the dizziness, Vissusaila, it could be a fairly quick fix or it could take time and effort on your part. You need to have this checked out at a hospital. Can your doctor refer you for investigation? Through a series of (fairly unpleasant) tests it should be possible to determine the type of dizziness in your case. Unfortunately, if your dizziness has only come on since the meningitis, then I suspect it is the kind that will take rather longer to fix - and requires you to teach your brain all over again, by doing lots of the kind of movement (in a safe way!) that makes you feel dizzy. Twenty years ago I was taught Cawthorne Cooksey exercises, which really helped. As it happens I am, this very morning going to meet a physiotherapist who is going over those exercises with me again, since my recent meningitis has messed up my balance again. So I must go now, or I’ll be late. Good luck to you, I hope you find the help you need.

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Kalirachi...this is exactly why I haven't gone to one..you nailed perfectly. Read it too many times, I don't need poison pumped into me in a body that is already struggling. I'm taking lots of natural things to make my immune system strong so it can fight this beast. My symptoms are many & I'm in my 11 11th month with VM...mostly still in bed 95% of my life. How can they act like it's no big deal! It's life threatening, life changing & awful. Family members don't even believe me..so upsetting. I had a lp at almost 10 months to get pressure off my brain & it came back abnormal even that long after diagnosis. There needs to be more education about this illness. Thanks for your post.

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I am so sorry to hear you are still suffering in this way, I do know exactly what it's like particularly with virtually no help or support from anyone. I have just started my third year of a slow recovery. The first year was certainly the worst and most challenging. It took me six months after leaving the hospital to learn to walk again. I was constantly dizzy and had lost my balance completely. Whenever I tried to stand my legs would feel like jelly, tremble and then give way. I lost count of the number of times I fell over and then couldn't get up on my own. What actually kept me going was pure anger at the way I had been treated and dismissed by the whole medical profession following a series of misdiagnoses and bungled totally inappropriate treatments. I knew that if I started relying on vestibular suppressants and psychotropic drugs I would lose the sharpness of thinking that I know was key to my determination to recover and to avoid ending up being a permanent invalid totally dependent upon drugs and medication. Jonathan's story on this site provided a real inspiration as did the advice I received from Meningitis Now. I wish you all the best and hope things improve for you soon as no doubt they will.

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I had a similar experience twenty years ago but, to be honest, the way the neurologist was putting it I saw his approach was justified. It wasn’t about meningitis at that time (at least, not diagnosed as such) but a non-specific infection followed by a load of pain, fatigue and muddle-headedness. “You have something we’re calling Chronic Fatigue Syndrome,” he said, “about which we can only address the symptoms at this time. That said, I don’t think we’ll make much progress until we’ve done something about your depression. You do know you are really quite depressed, don’t you.” At which I sobbed tears of relief, because I was and had been for so long, long before these symptoms had come about, that I had sort of forgotten that I was depressed.

So it was that I was prescribed some really good SSRIs, and was then able to positively and methodically deal with - or learn to live with - those horrible symptoms. I stripped my life of anything I couldn’t cope with, went seriously minimalist, and I actually managed to continue working (albeit with a serious “downgrade”, career-wise!)

Having had that experience - then slowly, oh so slowly, made something of myself again - must’ve prepared me for this current experience. The after effects of sepsis meningitis are not dissimilar. I feel your pain, Kalirachi, but I also understand the frustration that the neurologist must feel, being unable to directly come to your aid and make everything better. After an earthquake the rescuers must clear away the rubble holding you down, before you can emerge and start dealing with your actual injuries.

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Very true! Emily has been given many pills to try none of which have helped her and she has now resigned to saying no to new drugs.I don’t blame her at all.She is currently studying for her GCSE exams and some days are good not great other days I receive calls from school today she is really struggling with the pain and her vision is blurred.We are trying herbal remedies and cranial therapy next week so will see what happens then? We have been back and forth to various hospital appointments and yes the drs say unfortunately some people are left with life long change and no answer or cure it’s a very debilitating and sad illness to suffer and having lost a family member to this disease it’s very frightening x

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To be honest I have the opposite. I'm not depressed and tired of having my doctors trying to push anti depressants on me! I want help for the fatigue, constant headache, neck pain and brain fog. I am still more frustrated and angry. I have recurrent VM, had 6 times now in 12 years, and I'm so tired of doctors saying it can't be the VM must be depression.

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Oh my, so exactly how I feel. Disbelieved at every turn by specialists. Ironically after neuro honcho refusing to see me the ENT I saw last week for dizziness has re referred me to neurology for "some checks" deeming them to be orthostatic presyncope rather than vestibular. That should be interesting as I ended up making a complaint about my care by neuro dept in the end which is ongoing. But ultimately checks will of course come back negative and I'll be dismissed again as its just your ME. The perfect excuse to do nothing.

But I never had a single neuro symptom before the viral meningitis, I didn't even know I supposedly had ME, just the endometriosis.

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Hi Starry, words I might use to describe the outcome of any consultations with the neurologists I have seen to date would include equivocation, prevarication and sophistry. I had hoped that when I finally got to see an ENT consultant one year after leaving hospital and still suffering constant dizziness and loss of balance that this might show a route forward if not some sort of diagnosis. The man I saw was extremely supercilious, bombastic and condescending. He very quickly misdiagnosed BPPV as being the cause. I suspected it wasn't this because I knew BPPV causes momentary dizziness following head movements and normally lasts for minutes at the most. It certainly does not cause constant dizziness. This charming fellow referred me to the hospitals balance clinic for a series of Epley maneuvers. I tried to question him but was ushered out of the door and handed a leaflet on BPPV. I wrote to my GP and told him I suspected this diagnosis was incorrect and explained why. Quite predictably he didn't reply and I was unable to contact him, so fast forward two months and after a month of these manoeuvres being carried out my condition was deteriorating rapidly. Finally they carried out some proper tests which were Electronystagmography and caloric testing. These tests confirmed that I had Unilateral Vestibular Hypofunction to the left hand side with 100% canal paresis.

Having complained to the NHS about the appalling catalogue of misdiagnosis and inappropriate treatments I received over a two year period, last month I finally got to see a professor of neurotology at a leading London hospital. This fellow is considered to be the countries leading expert. After a brief examination he confirmed the diagnosis and also confirmed that the virus that caused my meningitis had also left me with permanent and significant nerve damage which was causing tremors in my neck,head and hands. So much for the diagnosis of 'migraines! He confirmed that I should start re-doing vestibular rehabilitation therapy and that my recovery has been delayed by two years of continuing disinterest and repeated misdiagnoses by the medical profession here in Brighton. I do hope you have better luck now and start improving soon. Best wishes.

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Ah yes, i remember you were waiting to see the london neuootology expert.

I am glad you finally got some answers. Shocking that it took so long.

I suspect mine probably is largely POTS. though my osteopath says with left right movements there may be some vestibular. To be fair the ENT was not arrogant, gently spoken but very brief. Just didnt explain very much.

My main worry is going back to the same neurology dept as i no longer have confidence in it. But to go elsewhere would be hours of travel in my part of the world and I cant do more than 2 hours of activity a day without crashing. And its an internal hospital referral so i cant easily say i want to go elsewhere anyway like I could at gp.

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Hi Starry, I can well understand your reluctance and frustration of getting yourself back when you're not feeling well to the same neurologist particularly when they've proved to be ineffectual and unhelpful. My complaint was eventually investigated by PALS. They were actually very helpful and understanding. I was offered a choice between seeing another ENT consultant here in Brighton who specialises in vestibular and balance problems or the Professor of neurotology at Great Ormond Street in London. Although I had to wait longer, I chose the latter. Being constantly dizzy and unstable and coping with the stress of a three hour journey up there in peak travelling times with more waiting time at the hospital was a certainly major challenge. However being psychologically scarred from the utter fiasco that has thus far ensued in my local area I didn't want to chance have another totally unsatisfactory encounter. Although I am still suffering from many other post VM after effects it is reassuring to know that at least the constant dizziness and disequilibrium should improve over time with VRT. Best wishes to you and no doubt you'll get there in the end!

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Hey. I can well understand the reluctance to stay in the area after everything. Norfolks just so darn far from anywhere. Unsatisfactory encounter it may have to be. I don't believe anyone can help me any more. :(

I'm glad PALS were helpful. In my case they were disinterested, very much on the hospitals side it felt, and just told me to go through the formal complaint procedure.

Presumably in a month's time I'll just get a complete denial rebuttal by some lawyer worried about litigation and that will be that.

What's VRT? Do you feel like you are gradually improving at all?

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Vestibular Rehabilitation Therapy

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I’m so sorry you’ve had two years go by without your condition being properly diagnosed and treated. It must be a relief though, to now be on the right path. Well done for persisting, Kalirachi! Many of us would not have made it as far as you have. Good luck with the rehab.

I’m off now to do some Googling: “caloric testing” & “canal paresis”

🤪

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Ah yes, I remember now about caloric testing. A very weird and uncomfortable situation - as were all their tests relating to dizziness, come to think of it.

Well, don’t shirk your therapies - your brain will adapt and find a way to compensate for the paresis. But perhaps you should skip the festive head banging to Slade’s Christmas hits, just for this year.

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Many thanks, Yup Slades Christmas hits are definitely on hold again this year. Yet another sacrifice! Have you experienced a similar vestibular problem? You sound very confident about the efficacy of VRT.

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Yeah, I first developed vestibular troubles with M.E. in the nineties and VRT was helpful. Along with the exercises I tried to keep as active as possible, because if I lapsed into long weeks of, say, office based sedentary work then I would find my dizziness returning. This latest meningitis thing chucked me right back to square one but, within a couple of months of increasing activity I reckon I’ve got the better of it again.

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You made me laugh, as you hit the nail on the head! No pun intended, so true, doctor's aren't sufficiently informed about after effects of our illnesses and they need to be better informed, I informed mine, in strong enough language that she actually looked into this disease and all available treatments and help out there. So shout out loud be heard, a Doctor is just a job ,same as any other, tell them, speak up and by the way we do come under the mental health umbrella, as it's a brain disease which can change a person's personality, due to memory loss, confussion, depression. Headaches at just because they can't see doesn't mean it isn't there.

Kindest Regards Anita

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Many thanks. I think perhaps one of the problems is that we tend to hold doctors in such high esteem that we are afraid to question many of the cliches and platitudes that are commonly used by them. If they were correct in stating that many of the after effects and indeed the ones that seem to be inhibiting our recovery are caused by our own anxiety and depression then presumably a large part of the problem is psychological rather than physiological. Further confirmation of this assumption is evidenced by the number of doctors who suggest or recommend CBT (cognitive behavioural therapy). If they are right then presumably hypnotism would be another form of therapy that ought to work. It would be interesting to know if anyone has tried this.

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