Hello I am a newbie, this is my story so far

So I collapsed at home with no warning, followed by headache and light sensitivity. Got emergency drop in doctors appointment and by this time I couldn’t walk. Ambo blue lighted me to A&E with suspected subarachnoid haemorrhage. CT head showed no bleed on brain. By this time I felt very unwell, I couldn’t bear any light whatsoever, had extreme rigors, headache but oddly no fever. It all starts to get a bit vague at this point, I couldn’t do anything. Ended up in a dark room, didn’t know where I was and hallucinating visually and auditory, my brain felt like it was in a deep fat fryer, my eyes really painful any light was unbearable. The only part of me that I still had was my voice, and it was a big voice, it took control but was not at all attached to me. Doctors and nurses spoke to me, I could answer but I was somehow just not connected. I was expected to eat and drink but for 2 days could not get my hand to my mouth or head to hand so just couldn’t drink, my neck was stiff, I couldn’t turn my head independently no one really seemed to really notice. And I felt so nauseous I just couldn’t consider eating. I became dehydrated and had to be put on a drip. Bad news, this either caused or coincided with a surge of brain and eye pain, I thought my head would burst. At one point at my worst I felt paralysed but eventually realised I could do a closed eye wink which was a relief, if all else failed I could still communicate if my voice failed too. My diagnoses on admission to that room were either Viral Meningitis or Migraine. I have had severe migraine before and I can tell you although awful it was not a patch on this thing. Because my illness did not settle I was given a lumbar puncture. After this we knew it wasn’t bacterial meningitis but it didn’t seem to confirm viral either. All through this I don’t think I saw the same doctor twice, not that I actually saw anyone because I couldn’t bear the pain in my eyes when they were uncovered. I felt I was blocking a critical care bed, but I couldn’t do anything, brain just wouldn’t work. On day 4 a doctor told me I only had migraine and there was nothing they could do about that, but I couldn’t move... So they were going to discharge me to another general hospital to recover. So I got a load of pain meds on board and I asked to leave. Got the discharge letter with diagnosis now showing ?Viral Meningitis. Husband wheel-chaired me out with a coat over my head (still too light sensitive which the doctors called photo phobic). And much to my husbands angst he took me home. So I knew this is going to take ages to recover from, my brain still feels very injured but I can see small improvements every day although there are temporary relapses. I hope the memory of it all fades... Sorry if this account sounds overly dramatic but I am just trying to tell it how it was. I am a very happy content person and just want to get on with my life, I have no time for moaning, but I am going to need psych help just to offload some of this experience. Can anyone out there relate to this at all?

[Gemobrien24]

I’m so sorry for the pain you’ve been through. A lot of the problems you’ve been through seem similar to what I faced, I had a headache from hell, neck aches, couldn’t control my balance struggled to walk and couldn’t face the sight of food let alone eating. I went to the hospital and was there in this state for 3 days until I had the lumbar puncture, which showed no evidence of viral or bacterial, it come back inconclusive so from this point onwards I was treated for bacterial meningitis to be safe. Now, four weeks on from being in hospital I’m completely back to normal. The only differences between the symptoms we both had seem to be that I had a crazy abnormal temperature and I had no sensitive to light, but like yourself I also had no flu symptoms.

[Hidden in reply to Gemobrien24]

Hi, thanks for replying. Seems to be the case that not everyone has same symptoms. 2 weeks on I am still struggling with balance and walking also I keep getting a low grade headache even after stopping pain meds to rule out a rebound headache. I am improving every day but very slowly. Still also have residual nausea. The fever thing is a puzzle but I did read somewhere that older people like me sometimes don’t present with fevers. It is reassuring to hear that you recovered in a month, fingers crossed here.

[July23]

Wow your experience is so very similar to mine I developed viral meningitis in July 2019 and was in hospital for a week.

48 hours into my admission I developed Mumps so I had the same neck pain plus swollen glands in my jaw.

My husband fed me bread soaked in soup. It was impossible to feed myself for a few days. Despite being a nurse myself, so knowing what was going on, I felt very alone and scared in isolation in hospital. I had that same feeling of being detached for much of the time.

6 months on I am still tearful if I have to recall my week in hospital.

I have started EDMR to recover from this. The first EDMR session was totally exhausting : to the point that I developed neck and back pain with photo phobia during the session ! However I do feel some relief already.

I am physically strong now but memory and concentration are still not quite back to normal but getting there.

I am glad you are making good progress. Dont underestimate the psychological impact this has and take time to heal.

As everyone says to me : be kind to yourself.. You will still keep on improving.

[Hidden in reply to July23]

Wow, thanks for the reply, it’s good to know someone else has had similar feelings. We still don’t know which virus caused my problems but afterwards I had earache, sore throat and bad sinus pain so must be that. Mumps is awful so to have that with the VM must have been just awful for you. Take care.

[kalirachi]

Your story brings back some very chilling and disturbing memories of my experience in 2016. The symptoms you describe being incredibly similar including the skull splitting headache and acute neck pain. Initially after a CT scan, armfuls of blood taken and an ECG I was told it was a stroke and admitted to the stroke section of the acute medical unit at Brighton Sussex County Hospital. I also had a high temperature at was vomiting constantly. I had lost my balance completely and was unable to walk at all. In the evening an MRI scan confirmed it was not a stroke. The following morning three doctors from the infectious diseases team spent nearly an hour examining me and asking questions. I then saw a neurologist who carried out a full neuro exam. Two doctors then appeared and told me I'd somehow contracted a mystery virus and I would be placed on antiviral and antibacterial drips as a precaution against viral or bacterial meningitis. This went on for three days, I then had a lumbar puncture which was completely messed up by a junior doctor trying to carry out this procedure for the first time under the guidance of a consultant with no patience who kept telling her she'd got the needle in the wrong place. On the fifth day I was told they'd been unable to identify the virus and that 'It had probably left my system by now'. They then told me it was probably a migraine and I'd be discharged to recover at home. Six months later I still couldn't walk, had numerous very debilitating problems and received no help or aftercare whatsoever. What is particularly traumatic and very frightening is the fact that in one of the biggest university teaching hospitals in the country the medical staff were completely stabbing in the dark. What followed for another three years was even more disturbing particularly the appointments and encounters with neurologists and other consultants who had no idea what had happened and kept saying that I must be suffering from migraines! Further training and retraining is vitally urgent if we are to have any faith in the medical profession certainly as far as meningitis is concerned.

[Hidden in reply to kalirachi]

OMG you have been through the mill. I fully agree with you, I saw some excellent doctors but others were atrocious, including one stroppy person who said I only had migraine and then proceeded roughly to take the back of my head and tried to force it onto my chest, you can imagine what that was like. Take care.

[kalirachi in reply to Hidden]

Yes, medical science as far as brain problems go hasn't really advanced much since medieval times when 'trepanning', the process of drilling a hole through the skull to supposedly relieve pressure was the approved method of treatment. Despite my initial diagnosis of a stroke and then migraines I was told whatever virus I'd had had destroyed my vestibular (balance nerve) and this had 'probably affected other areas of my brain which accounted for my inability to walk without staggering and swaying all over the place. After two years of struggling with this I finally ,after complaining to the NHS, got to see this country's leading professor of neurology at a London hospital who explained that my inability to walk properly and the constant tremor I now have in my head and arms was caused by PTSD as a direct result of the very poor treatment I'd received over a two year period. His only answer was Sertraline an antidepressant which he said 'might' calm things down a bit! It's quite obvious to me that these so called experts don't have a clue and are simply guessing. That would be bad enough if they weren't so damned pompous and arrogant about their very obvious and transparent ignorance. Good luck with your recovery and all the best.

[Hidden in reply to kalirachi]

Gosh, you sound like you have been through the mill and still no answers! Still early days for me but I’m keeping my fingers crossed. I just keep telling myself doctors are only human with all the usual foibles. But yes it is very frustrating when you can’t get answers, they only seem to be able to prescribe or operate, it’s no wonder we turn to alternative medicine. Trouble with alternative practitioners they just seem to be out to make money so there are a lot of charlatans in this sector. Good Luck and stay strong.