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[MissAlch3Myst]

Hello!, my story short.

Got Meningitis few years ago, doctors never were totally sure which kind but they said “viral”, as I did not died in matter of days as they said bacterial could do to me. Now I’m experiencing DPDR/ intracranial pressure (when my anxiety goes high), depression and anxiety always been with me but now more, I wanna know if someone here knows this?, if DPDR is result of meningitis and why I have more intracranial pressure when I notice I’m not drinking much water during the day?, I’m also pre diabetic so I don’t know if I should go check myself with a neurologist. But I would appreciate lots if someone can give me some advice. Thank you!.

[Landlord]

Hello, I was diagnosed with B.M. & V.M. nearly 6 years ago....in my opinion from my experience, no symptoms or side affects can be ruled out as a result, the simple facts are we as a human race still don't know enough about the illness and so medicine helps people the best way it can.

Before my illness I was exceptionally work fit as a builder, from the day it happened my leg's especially don't work properly anymore, I live in horrendous pain daily that seems untreatable, I take numerous medication daily......however.....I'm alive and can walk most days, it may seem very easy to say by outsiders (people not ill) but you have to focus on what's good , it really is that simple .

I've not comment on hear in a long time , perhaps i/we should, the mental challenges over my time have been unbelievably extensive.....I'm not actually sure if my bumbling on hear is of help but I actually think it's better than all the medicine stuff the doc will tell you....xx

[Jonad724]

I had near fatal VM in 2002 and was treated in a similar way by the medical profession. Saying it's viral because you didn't die is a bit like trying to work out what type of leg fracture you have. The key thing is that you have a broken leg and it needs treatment.

What we do know is that, even just by going on the experiences of other VM survivors on here, is that it tends to leave after effects for much longer than the other types. I suffered from intense depression because I was grieving for the life I had prior to VM, I have a constant headache which varies in intensity and if I get too stressed the pain becomes overwhelming and I descend into an attack of Mollaret's Meningitis, or recurrent aseptic viral meningitis, to give the other name.

Whilst I can't give you advice, I can say that what it sounds like is that you are suffering from the after effects or VM. If you're going to see a neurologist, try to find out what experience they have of treating VM first if you can. If they don't have much experience then be prepared for them to say that what you are not suffering from is the after effects of VM. That's because the medical profession is taught in training that VM is no worse than flu, is a mild disease and that everyone recovers in 2-3 weeks.

I was only referred for a brain scan because I had health insurance that would pay for it otherwise my GP wasn't going to bother. That showed I have a dent on my brain from the acute pressure on the meningitis. I was lucky, the neurologist I saw was one of the leading experts on VM and told me what the likely prognosis was but he wasn't a NHS neurologist, as I had BUPA I bypassed the 'it's always mild, there are no after effects. everyone recovers in 2-3 weeks' stage.

Nonetheless my GP refused to sign me off work after 4 weeks as he said I had recovered and was better. This despite the fact that I could barely walk, talk or string a coherent sentence together. I did ask him how many patients he had treated with VM and after a lot of bluff and bluster he had to admit it was none. Trying to argue with a doctor when your head feels like it's exploding and the toughest question I could face was 'would you like a cup of tea' and even then I couldn't fathom out the right answer, was difficult in the extreme. I think that appointment was the longest GP consultation in history as a result.

From my own experience, anxiety and head pain are definitely linked. It's also worth remembering that medical science only understands about 20% of how the brain works so you have to wonder what they do about the other 80%.

Following my experience of VM, I was privileged to be asked to be a Volunteer Community Ambassador for Meningitis Now with a special interest in supporting people post VM. Please feel free to DM me if I can help and I will arrange for peer support to be set up via the charity. This a way of Community Ambassadors supporting people with agreed prior points so it's not a long process, it's just to make sure things are done right.

I also wrote some blog posts on here about my experiences post VM. If you click on my profile and then click on 'posts' that should bring them up.

Take care and remember you are not alone in feeling like this. I felt very isolated in the months and years after VM and I am determined that no one else should feel the same way I did.

Jonathan