It's been a rough 21 years since I had Vira... - Meningitis Now

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It's been a rough 21 years since I had Viral Meningitis

Barb3171997
Barb3171997

Hello everyone, I'm new on here and so glad to have finely found this life saving site! I was diagnosed with VM on March 17, 1997 after driving myself 50 miles to the closest hospital,they don't know how I did it I was so sick by then. I was in the ER and they were treating me for a migraine headache, but by then they said I was screaming so bad from the pain they just stuck me in a little room out of their way and was planning on sending me home soon. Luckly for me a great Neurologist heard me screaming and stopped by to find out what was going on. That was the start of a 2 and 1/2 month hospital stay. The list of health issues I deal with now and in the past is unbelievable. And every Doctor I have seen says the samething, VM has nothing to do with your health problems! Haven't been to see a Doctor now for about 4 years now because of the way I get treated. Sorry for the ranting on, but I used to try talking to my family and friends about how I was feeling and going through, but they just thought I was A. a hypochondriac B. Seeking attention C.or crazy. Would love to hear your thoughts, Barb

15 Replies
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Hi Barb,

I'm so sorry to hear it. It has only been two months for me since I became ill and I feel awful. I don't bother to tell friends/family or doctor for all the reasons you said. My friends tell me to think positively and not talk about because that makes it true (!!). Well sheesh, how about the other way around?! Family is not interested and wouldn't believe me anyhow and I know that if I pursue the doctor thing, it will be the same story that many people here are saying. I try to pretend I'm fine and everyone's good with that, but nobody seems to even notice that I am not the same person.

Did you have meningitis more than once?

Best of luck,

Amrita

Hi Amrita-A, So sorry your going though this now. I've only had it once that I know of for sure. I've felt like I've had it a couple of times, but was told once you've had VM you have a about 99.99% of never getting it again. I even asked for them to do a spinal tap on me to check and they wouldn't do one! They made me feel like oh she's just in the EM Room seeking to have a spinal tap done because she loves them sticking a huge needle in her spine and then having the worst headaches afterwords! There is so much that I'm finding out VM that I never was told or knew, thank God for this site! Please remember too, that everybody resonds different to it. So dont get freaked out reading everybody's posts and thinking all these things will happen to you, ok! I'm waiting right now for my hospital records to get here so I can hopefully understand things better. We're you hospitalized with it and if so for how long?

Think positive thoughts Barb

CHB34
CHB34
in reply to Barb3171997

Hi. Something you said really resonated with me. When I was discharged from hospital after VM about three weeks ago, no one said anything about any potential difficulties I might face when I got home and I was just dismissed with "you'll be better in ten days". That was it, no information at all. This would have been bad enough for someone with no other health issues, but I do. Luckily, I found this forum and spoke to a very helpful and reassuring woman on the Meningitis Now helpline. My GP immediately said, when I spoke to him, that it will take several months, at least, to recover. Why was none of this said while I was in hospital?! It makes me so mad! I am still really ill and debilitated right now, but luckily I have good support, but it is really getting me down. Interestingly, the woman from Meningitis Now told me that cases of VM are very rare, with only about 6,000 cases per year in the whole of the UK, so many doctors have never actually seen a person with it, but this does not excuse patients not being properly informed. Good luck!

Starry
Starry
in reply to CHB34

My experience of hospital care was very similar to yours, zero information and zero aftercare. Ive only discovered things now a year later thanks to tbis place and charity that I could really have done with knowing when I was discharged. Hugs

CHB34
CHB34
in reply to Starry

Yes, it just makes things so much worse when you don't have the information you desparately need on top of feeling awful. I don't know why doctors think that not giving you all the facts is ok, even if they are ignorant themselves, how long does it take to look things up?

I had friends visit yesterday and now feel bloody awful today (having ME/CFS doesn't help). It is so demoralising and frustrating!

Hang on in there everybody!

Starry
Starry
in reply to CHB34

You too x

I have cfs too. Seems to be quite a natural after effect of it to get perhaps.

I spent forever feeling that I was just being weak or pathetic because I didnt know how long recovery could take or what sort of after effects I could possibly experience. It probably also led me to try to go back to work too soon, which then ended disastrously and set my recovery back months.

CHB34
CHB34
in reply to Starry

Yes, it feels so like when I first got ME/CFS many years ago with exactly the same issues. I find myself blaming myself at times for my inability to do things and lack of progress - irrational maybe but that's how it is sometimes. I think I put more pressure on myself than anyone around me does. Stay strong!

Starry
Starry
in reply to CHB34

You too xx Yes I find frustration drives me mad, I get angry at myself at times still at not being normal. Have you done any counselling to help you be kinder to yourself? I did a few weeis cbt. It was a bit weird bit helped more than I'd expected it to.

CHB34
CHB34
in reply to Starry

Just to add to my tale of woe, I have been under a mental health team for most of my adult life (depression and anxiety) so have embarked on several courses of therapy and counselling to address various issues, with varying degrees of success. I think the difficulty is keeping up what you've learnt once the course has ended. I think that when you are trying to cope with major illness, physical or mental, there is often a big disconnect between what you know rationally and how you feel. I don't have an answer for that one yet!

Sometimes life feels such a struggle!

Hi, I’m 2 weeks out of hospital now (I’m 20) I don’t know where I’d be without this website! I have the same problem of people not caring but my doctor is pretty good and my mother and nanna are trying their best to help and understand but my partner (whom I live with) and my friends just don’t want to know! It’s horrible cause I just get called lazy and boring because I’m tired and hurting! I have permanent side affects like deafness and becoming blind due to VM am they also messed up on one of my 3 spinal taps and now I have fluid on my lower back! I know life won’t go back to the way it was but to go back to some sort of normal would be grand x

Hello Barb....I am new to this site too and like you many years have gone by since being diagnosed with VM. In fact it is 30 years and my migraines only started after I got VM. Now I live with them but have had periods of time when they have been less severe. Right now I am only just existing!! I too have been hospitalized and been tested for all sorts of things and finally they say I think it is just a virus. Don't worry that bloods are all out, LFT completely off not to mention that terrible word FATIGUE.....all part of how a virus works I am told.

Barb3171997
Barb3171997
in reply to Ga59

Hi Ga59, Sorry for taking so long long to write back, but like you I feel I'm just existing right now. I might have a hour of two of feeling "normal" but lately it feels almost like I'm the the twilight zone. I've been having to use a electric scooter to get around because of so much pain in my legs and feet I can't hardly walk! That's the latest of why is this happening to me that the Drs have no answers for. Hope your doing better and keep in touch!!

Ga59
Ga59
in reply to Barb3171997

Interesting! and so sorry to hear but sounds so familiar...what I would like to know is do the medical profession make the link between having had VM to a lifetime of unusual and debilitating symptoms that they eventually put down to a virus. My bouts of 'really bad' last about 5 or 6 months and then I can go for about a year to 18 months reasonably ok, but this last bout has been since the beginning of the year and ended with an emergency trip to hospital and many tests and same conclusion....a virus! I would love to find a Dr that would take up my file and look through it and say ah I can see the problem it seems to stem from having had VM. I was never sick before and had had 3 kids close together and was a busy young mum. At one stage I was told if I came back in 5 years I would more than likely be told it was MS as I had lesions in my brain but not exactly where they would be found with MS!!!

I had viral meningitis in 06. Same issues and ended up in the mentAl health deal. Lost my job as an electrician and basically everything at 42. Never really got back on my feet so to speak. I go to docs, see a therapist, the whole nine. I also have honorable.discharges from the U.S. Marines and the USNR. Once you get viral meningitis you have to be ready for change of life if it was really bad. I caught it because I was an idiot, messed around with a lot of women in the 90s and caught HIV which progressed to Aids. Meningitis was because my immune system was shot. Amazingly I have my physical health back but the mentAl stuff, it's still there. You're not alone.

Hello, You can find my 28 year old daughter, Rosie S' Story, via the link on the forum stories from the home page.

We found that cranial massage worked wonders for her. Her job is working with horses on pretty much a daily basis and is very physically demanding.

It is rare for a story to be so positive and we have tried to let people know that this amazing complementary therapy worked for her. It helps release the spinal fluid which VM leaves a blockage for. Rosie is pretty much cured after around 10 sessions coupled with actupuncture, although found awesome relief after only one appointment. She is now free of all pain killers and antidepressants and feels right back to her old self.

We can only let you know what worked for her. It's not for all, but has now given amazing relief for many. It seems the success could be to do with the skill of the cranial osteopath you use. So it is important to find out the osteopaths credentials and experience in this specialised field particularly dealing with VM sufferers, if you can. (Not all osteopaths realise that this helps VM sufferers, it is often carried out on young babies with birthing problems). You need an osteopath and not a therapist who mearly has some training in cranial massage.

If you find you are getting the violent headaches and feeling lethargic and depressed after a few weeks, give this complementary therapy a go, it really could be worth it and save you being on prescribed drugs, along with months, years, of unnecessary suffering.

Kind wishes and best of luck

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