Relief from VM

[Faith8990]

Hi there! This site has been a world of info and i am so greatful. I am wondering what kind of experiences people went thru when their Viral Meningitis was finally at its end or lifting? It seems many have a come and go, good day/bad day with it. I'm just wondering what I may expect when it is finally over, if there are any signs I might finally be reaching the end of this horribel time. Thanks so much.

[Caprisunliz]

Hi Faith,

When did you get VM? I recently got diagnosed in July so am at the start. Have you joined the Facebook peer support meningitis now page? Lots on there. Best of luck

[Faith8990 in reply to Caprisunliz]

I am going to verify the diagnosis today with a seperate doctor in a separate group. My usual Gp and his group shrugged it off as the worst migraine of my life and told me to go to the ER if it got worse. They basically acted like i was making it up. I have had to look thru everything to figure things out as i have been ill for 18 days now! I can barely get out of bed. The terrible head pain, which I continued to tell them was not like any migraine i had ever had, is not even the worst of my ailments anymore. Now it is the lethargy, like im so tired it hurts. The stiffness and pain in my neck - yesterday i could not touch my chin all the way to my chest without extreme pain. I have been winded and otherwise im a healthy person. My BP has been up and my temp increases a bit every day. It just all makes sense. I will know for sure by end of the day. Its been one of the most miserable things ive ever been thru. But even worse when the people you rely on to diagnose and care for you just push you away! I will definitely update after my tests. I hope that you are resting comfortably. This site has been so wonderful. There is not enough info out there about this illness!

[IRHONDA in reply to Faith8990]

Please Please Please don't ever muck around with this again you need to go to hospital ASAP....staying home .... if I stayed home the doctor at the hospital said I would literally die !!! as my VM is one that can kill me ... so please don't ever pass it off or let any doctor pass it off as soon as I get to hospital they do the lumbar puncture and the xray firstly ...my doctor warned me when I have the first signs to get myself in there I suffered with migraines all my life and they are different to VM

... goodluck

[Faith8990 in reply to IRHONDA]

IRHONDA i told my doctor of 12 years that this was not my normal migraine for days. All he didbwqs send me home w steriods and instrusted his staff that i was just status migrainous so they treated me the same. I was told just to go to the ER if I needed another shot for my migraine pain! I was so miserable and i KNEW something was wrong. I finally found a completely different doctor at a different practice with a different hospital. He actually listened and took the vorrect steps and has diagnosed me with VM. I still havent recovered fully and he said they will hospitalize me after the weekend if i am still ill and run more tests. ☹️ Most of the literature i read says VM lasts from 7-10 days but i see so many on here suffer for longer. It seems it depends greatly on the virus behind it. I am just grateful I found supportive care and this site. I was starting to feel like i was losing my mind! Thank you for your reply and care. Any further info you have is greatly appreciated. Best of luck and prayers for you!

[IRHONDA in reply to Faith8990]

Far out if your no good after the weekend ? they will place you in hospital that's not good enough god I feel for you as I know when I have it I cant barely get out of bed to visit the bathroom and not only that you need tests ect done its not on I am always in there for 7/10 days but when I go home I have to take it easy no rushing around as it weakens the immune system try and build yourself up after going thru it ... I have got onto a replacement meal I take 3 times a day you couldn't possibly put whats in the shake (healthy wise Carla Oates) into a meal, try very hard to eat well and healthy, I try not to put any junk into my body. The doctor when I left last time said to me if I could write a prescription for you it would be don't get run down and don't get stressed....if we can try and do this we will hopefully get thru another year VM free <3 take care please ...

[kelpie25]

Hello. I'm 2 years 3 months since VM diagnosed. I still get daily headaches, some not so bad as others, and my GP says they can last for 4/5 years, from his experience with another patient. After a week in hospital I did not have any follow up. As I already see 3 different consultants in 2 other hospitals I did not worry. Not what you want to hear, I expect. Good luck.

[IRHONDA in reply to kelpie25]

I would be visiting a Neurologist see what he thinks ... I cant go off my Valtrex at all...

[IRHONDA in reply to IRHONDA]

Ive been on Valtrex since 2014 I cant go off it either not for the rest of my life .... lets pray one day than can cure all of us <3

[IRHONDA in reply to kelpie25]

I had a Cranial Massage today someone on this site was talking about it ,. far out I would recommend it to all of you I feel like im walking on clouds I hope everyone on here can get this done the lady who did me said I was quite bad my whole body was so tense by the time I left I could already feel the benefit and shes told me in the next 2/3 days it will improve, she also told me if crap happens except move on don't focus on anything negative we all know that but we must all do it as its one of the things the Neurologist told me brought the VM on besides getting run down ... goodluck to all x

[Jonad724]

I'm 15 years post near fatal VM so hopefully I can give a more long term view. The simple answer is, I'm afraid, everyone is different. There does seem to be a link between how serious the attack was and the number of after effects and continuing problems people have and also between how much resting you do and the speed of recovery. I have been left with a constant headache and a variety of other after effects including recurrent aseptic meningitis or to give its proper title Mollaret's Meningitis. It is not a life sentence however and it can just be a case of re-defining what 'normal' means although please don't listen to doctors if they say that VM is never more serious than flu and that you should recover in a couple of weeks as that's what they're taught in training and is, and many of us here will testify total rubbish.

For me the signs that I was getting better were noticing that I could do more for longer each day without needing to rest quite as much. When I was first discharged I could barely walk and getting up stairs was a major issue however as time went on and i rested when my body said rest I found that I did improve. You may not notice the improvements as they can be quite subtle but think back to how you were when the attack first started and how you are now, or at a future point in time, and that will give you a good indication of your progress.

i did say it's not a life sentence and it really isn't. I have since coming back to sport, 5 years after the attack, completed multiple triathlons (including three half ironman races) and this year alone two half marathons, one of which was a new personal best beating my time from 30 years ago.

I am now a Community Ambassador for Meningitis Now so if I can help or support at all please don't hesitate contact me on here via the messaging function. I also have written a number of blog posts about my recovery from VM which may also help, just click on my profile and select 'posts' and they should appear. Good luck and all the best, Jonathan

[IRHONDA in reply to Jonad724]

Hi Jonathan. I live in Australia and I had my first attack 1998 then 2002 then 2012 then 2014 every time I say I cant go thru this again but I do we just have to be strong no one can pull us thru but ourselves <3 ... until the last one I didn't know it was as serious as it is ... the Neurologist was so good to me he took so much care daily he would check on me and he did more tests than any other hospital did funny enough it was an old country hospital, just before he released me he said unfortunately you have the one that needs attention ASAP as he said you can actually die of it, so all these people that stay at home wondering if they have it , or stupid doctors not following up with all tests .... keep pushing doctors don't take NO for an answer ... we need to be heard ...

[Faith8990]

Thank you so much Jonathan! The medical community has been nothing but a let down and I have been suffering alone. Being told time and time again that it is just "the worst migraine of my life" and to "go to the ER if it gets worse." I am following up with an internist at a completely different group today and have no doubt what my results will be. All of the stories and posts I have read on here have in a way, given me hope. I will definitely read your posts and update after my appointment. It does feel like it will never end right now and whats even worse is that its like no one will believe me just bc i had a history of migraines. This has been nothing like a migraine coupled with terrible neck pain and stiffness, back pain, zero energy, terrible lethargy, balance issues, feeling pressure in my head moving all around, muscle aches, the flu times 100! Its been terrible and depressing. I know that no one can diagnose me on here and I will have it verified by the end of the day but you just know your body, ya know? I appreciate the information and i am off to review your posts! Thank you for the hope!

[IRHONDA]

Im on VALTREX daily... have been for the last 3yrs