Viral Meningitis

[Jadahughes]

How do you get viral meningitis ? And will they find out what’s caused it ?

Also how do they know it’s gone will they do another lumbar puncture ? Thanks

[Debcorn]

If u show all the right tick list off symptoms they treat u straight away with the anti viral straight away and then do a lumber puncture To confirm

I am still learning how I caught it and many people have different stories

They say mine was through being run down and having previous herpes virus , a cold saw and shingles 3 years prior to V.m

[Jadahughes in reply to Debcorn]

Thanks for your reply. I have been run down lately too. I’m in hospital for a week now on anti viral iv. I’ve been told to not have visitors and I just want to see my kids. I’m heartbroken. Hope this passes soon

[Jonad724]

I had near fatal VM in 2002 and so I hope my experience helps. VM is usually caused by a virus already present in your system but has been dormant so chickenpox for example. Mine was likewise caused by being run down, working 50-60 hours a week and doing a lot of travelling. My neurologist said that if I was lucky it would have come out as shingles and if I was unlucky then it would be VM, I was unlucky.

Lumber punctures are a risky procedure so are usually only done to confirm the diagnosis and then recovery is judged pretty much by how you feel. Doctors are taught in training that VM is never more serious than flu and that recovery takes 2-3 weeks. Unfortunately VM hasn't read those books and recovery can take a long time and requires a lot of rest and listening to your body. Try to do too much too soon and it will knock you back, I know from bitter experience. VM can also leave lasting side effects, again the medical profession will argue that it doesn't but there is overwhelming evidence on here from other VM sufferers that they are wrong.

Since doctors are taught that VM is not serious they don't always start treatment with anti-virals straight away and sometimes not at all. They also tend to discharge earlier than they should which they did with me. I was though rushed back into hospital 3 days after being discharged in a condition described by my neurologist as 'checking out of hotel life' but as VM is 'never serious' I was sent home again the same day. I couldn't walk, talk properly or recognise which one of my children was which.

Hope this helps, Jonathan

[Jadahughes in reply to Jonad724]

Wow That brought tears to my eyes. What an experience

They’ve put me straight on anti viral iv for a whole week. I’m not working at the moment. I had my baby and didn’t return to work. It was decided with childcare costs etc that I would be and t home mum until he reached school age, but I have never been so tired. I breastfed from the beginning and the lack of sleep I’ve had since he was born is unreal and I never seemed to be able to catch up. I really think this is just my body telling me to stop . As much as I appreciate my partner bringing home the money. I literally did everything else. I would choose working than being a stay at home mum anyday.

I am so weak right now and head hurts so bad I shouldn’t really be on my phone but I’m just so lost between these 4 walls and wanting answers as the doctors seem to think this is just flu - as you said. I will contribute to update as I go on. It’s killing me not seeing my kids. I think it’s best I don’t just incase. All I want to do is be st home resting here is so so noisy but I know I need these anti viral . My short term memory is also being affected but nurses are telling me it’s because I’m in hospital time is going slow etc

[Jonad724 in reply to Jadahughes]

It does get better although it did make me smile when you said you were not working because you had a baby. I think what you mean is you're working 20 times harder now you've had a baby and having VM on top, no wonder you're suffering now. I had short term memory problems, still do for some things, but by and large they get better.

Five years after the attack, I went back to triathlon, overweight, unfit, tired and bloody minded. 10 years after the attack I did my first half ironman and I have since done three more since then plus several other triathlons including the long course weekend in Wales, a half ironman over three days, in Wales not renowned for being terribly flat.

I'm a community ambassador with Meningitis Now so if I can help at all please just send me a message or let me know here and I'll be in touch via PM.

[Jadahughes in reply to Jonad724]

Wow I live in Wales and yes it’s not very flat lol. I’m much better today but very achy. Worried about a holiday next month I don’t think I can do it if I’m this tired but I’ll jjst see how I go. Are there any vitamins etc you recommend? Or have taken yourself ? Thank you

[Jonad724 in reply to Jadahughes]

Long course weekend was in Tenby so definitely not flat. I guess it depends where your holiday is whether you will be able to manage it. I found travelling very tiring in the immediate aftermath of the attack but if you can rest then it will probably do you good. One thing I did try that seem to work, is coenzyme Q 10 which apparently is called natures spark plug because it helps to release energy. It did also ease the headache a little bit but not much. What it really allowed me to do was to go back to work and be able to get through the day, although at the end of it I would be absolutely shattered. In the early days following the attack however the best thing you can do is rest, rest and when you’ve done resting, rest some more. It really drove me nuts not being able to do the things that I could do previously or even not even walk properly, talk properly or recognise my children or remember their names. I wrote some blog posts, about my recovery from viral meningitis which you might find help. Just click on my profile and I think click on posts and that should bring them up.I hope they help and please do get in touch if there’s anything else I can do.

[Jadahughes in reply to Jonad724]

I’m from a place which has now just had a Guinness World record for the steepest street in the world.

My holiday is in Turkey with a. Couple of the girls. Mostly relaxing but hope to also have a few drinks, go on a boat trip etc. We will see. I will try my very best to just rest until then.thank you will look up your blogs etc

I wrote some notes on my phone whilst in hospital as I was very forgetful - still am 😫

Sorry if I’ve already asked, but did you find out the cause of your Vm ? Thanks

[Jonad724 in reply to Jadahughes]

That would be Harlech then? Don’t worry about being forgetful, my short-term memory has been affected permanently now, I can’t remember names or directions and I developed a number of intolerances as well because of the acquired brain injury but you just crack on and get used to it I suppose. From the lumbar puncture, the hospital determined that my VM was caused by chickenpox, which I had when I was 31 very seriously. It’s a good idea I found to keep a short journal every day about how you’re feeling, how tired you are and so on. That way it’s much easier to track your recovery because, it might be very slow and you won’t wake up suddenly one day thinking wow I’m feeling better.

[Jadahughes in reply to Jonad724]

Yes Harlech 😀 I had chicken pox quite late too I was 27 when I had them for the first time. I guess I’ll never know the cause of mine. Thanks for you help I’m sure to message again soon. And no way are you in your 50’s - wow ! Well done you should be so proud of yourself you look awesome !

[Vmzoster]

For the most part, you get it the same way you’d get any other virus...contracting through contact and exposure. Most of the time, it’ll either be only a flu, rash, shingles or however the virus normally behaves. In most “healthy” “normal immune system” people, it will never penetrate the spinal fluid so your spine and brain are generally well protected from these things. However, people with compromised immunity, other illnesses and disease, very young or very old, changing behavior of virus or environmental factors that can’t be predicted can allow it to break the barrier to spinal fluid. Once in there, humans are particularly vulnerable. It’s different for everyone and it’s pretty rare luckily. One person could get normal symptoms of a virus or flare up, another person gets meningitis.

[Ruffygoosesnake3]

Sorry, Jada. I'm not a doctor, and I have no idea. The virus in my mengies was chickenpox-- they said. I had chickenpox when I was younger, so maybe it was shingles. It has been a slow processes getting better. Anti-inflammatory diet (aip paleo for a few weeks) good rest and steady light exercise has seemed to help me. I go back in Oct for check up. I sure hope I don't need to do another spinal tap. That sucked. Not sure how they know. I'm just going on how I feel. If i feel normal, I'm good with that. Good luck and good health to you

[Jadahughes in reply to Ruffygoosesnake3]

Hey thanks for your reply. I am not currently home. My results came back yesterday morning negative for herpes or whatever else they look for.. so basically said it was probably from soemthing as simple as common cold / flu or whatever. I consider myself a healthy 30 year old. Non smoker, drink on occasions.. walk a lot etc no previous medical conditions etc, rarely catch a cold

And boom I got hit terribly with this virus. I am so much better having slept in my own bed lastnight though. I’m not sure how the next couple of weeks will go but hopefully it can only get better. They’ve told me no follow ups are needed etc

Good luck to you in October

[Jonad724]

Long course weekend was in Tenby so definitely not flat. I guess it depends where your holiday is whether you will be able to manage it. I found travelling very tiring in the immediate aftermath of the attack but if you can rest then it will probably do you good. One thing I did try that seem to work, is coenzyme Q 10 which apparently is called natures spark plug because it helps to release energy. It did also ease the headache a little bit but not much. What it really allowed me to do was to go back to work and be able to get through the day, although at the end of it I would be absolutely shattered. In the early days following the attack however the best thing you can do is rest, rest and when you’ve done resting, rest some more. It really drove me nuts not being able to do the things that I could do previously or even not even walk properly, talk properly or recognise my children or remember their names. I wrote some blog posts, about my recovery from viral meningitis which you might find help. Just click on my profile and I think click on posts and that should bring them up.I hope they help and please do get in touch if there’s anything else I can do.

[Jadahughes in reply to Jonad724]

Please ignore last Q. Just re read what happened to you in previous posts. Have you had anything similar to it since ?

[Jonad724 in reply to Jadahughes]

Don’t worry, most days I can’t even remember my own name. Yes, I have had severe pneumonia twice, sepsis twice, a blood clot on my lung caused by the pneumonia and also serious kidney stones. Put it this way, you don’t want to get into a game of medical poker with me any time soon!

[Jadahughes in reply to Jonad724]

Oh my god. I’ve got nothing to moan about then compared to you 😯

[Jonad724]

You have a lot to contend with, having young children is the hardest work imaginable and to add VM on top is just unimaginable. It does get better though and when your children are grown up, you can look back and be proud.

[Jadahughes in reply to Jonad724]

I hope so. I’m scared of not being myself and doing normal day to day things with them. We’ve done nothing all summer as my fatigue started weeks ago and I just didn’t click that something must be wrong. I just thought all the no sleeping finally caught up with me. I had a bad night lastnight I just couldn’t sleep. My legs were heavy, numb and uncomfortable.. I would try and drift off to sleep and wake to my heart beating extremely fast and me thinking I was going to die.?? What is that all about. Ugh god I feel fed up this morning already.