Hello and this is my story....I’m about 2 months post viral meningitis and this has been a slow journey to recovery. I had the same experience as most of you, several trips the the ER and my primary care provider and no relief or diagnosis. The only symptom I had that really stood out was the headache and fatigue the “classic high fever, stiff neck” not really. I finally asked for a spinal tap cause I was desperate and there came the diagnosis 10 days later.
What is sad to say is that I actually practice medicine... and this was way at the bottom of my differential. And when the diagnosis came I was In shock and scared because I had never treated anyone with viral meningitis and what I have been taught was not accurate with what I was going through...recovery has been hard when And when I was fishing for answers from my colleagues who I respected and trust most had very few answers. So most of you in the USA are correct if you felt like no one understood because I felt it and it was beyond frustrating. At my doctors visit I still have to raise questions and fight to get my point across and it feels like I know more about this topic then the people I go and see for help. This has changed how I view my patients and colleagues...the healthcare community has so much work to do....me included....but I am up for the challenge and working hard on this!
This community has been helpful and I’m sure it will be helpful to others who share our story.
Fast forward back to recovery it has been a journey, I still have back pain, shoulder tightening, muscle spasms, fatigue and Dizziness Some days are better than others. I have entered the space of acceptance that recovery is a unquie journey for everyone and believe it or not but many people do not have any answers only experiences. This community is courageous and has provided more answers and advice to me than the medical community when it comes to VM and for that I am forever grateful. It took me a while to share but thank you everyone for your stories it gave me the courage and support I needed.
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TCTC19
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Ive been lucky here in Sydney doctors know exactly what to do and quickly, and the sensitivity to the light still bothers me, funny people often say to me you still have your sunglasses on and I say yeah the lights in these shopping centres is too glarey they just don't get it, it actually makes you feel sick to the stomach and it hurts, but if you havnt felt it like us they don't understand do they ... take care I hope your journey thru this despicable disease lightens ... after 4 bouts im pretty tuckered out I cant over do and I used to build houses so I havnt got that strength anymore ... although I must admit sometimes I surprise myself, and can do what I used to but usually catches up with me the next day ...
Nice to hear honesty from a health care provider. I am starting to think that crowd sourcing is the answer for a lot of things medical. These boards gave me the validation that my medical providers just weren't. Since then I have found some great doctors that are more open to working with me and learning with me. It has been truly enlightening.
my neurologist at THe Hawesbury Hospital was dam wonderful, he kept me in longer to do more tests, to find out that I have the dam v.m. that can kill me theres a few types and that's the fourth time ive had it and he was the only one to bother taking it further, he also arranged for me to go to a hospital , to look in on me every month to make sure I was going ok, he was really a decent, doctor.... anyone having problems with neck pain still, I swear by my tens machine .... nothing gives me relief like it does and only a cheap one off ebay
You are lucky. I worked for a chiropractor and I can't stand the tens machine! I always used it on one of the lowest setting possible. I have constant neck pain, pretty much every day. I see you have had VM 4x, I'm at 6x now. I'm also a migraine sufferer and now I see my family look at me differently, wondering "is this a migraine or is it number 7" when I have a really bad migraine. So sad, but that is life now. I am definitely a different person in some ways. 2018 was rough, had VM #6, a breast reduction (which did help with some of the neck pain) and a hysterectomy. I recently went back to work part time and I am taking it every easy and the fatigue has kicked up a little with the new job but it is not ruling my life. Fingers crossed! Luckily my neurologist is there for me and is helping me find the right balance. My only advice is if your doctor is not listening? Try another one. Here in the states there are a lot to choose from in most areas. (I live outside of Atlanta).
ok, do you ever have mini bouts ? I had one last month 16th Feb, and omg I thought I would end up in hospital if it wasn't for my dogs and me living alone I wouldn't have gone for sure the pain and pressure is still there in my head and the neck pain yeah still there, and giddy no nausea, but before it hit me the previous weeks leading up to it I can't tell you how tired I was it was so bad and I'm always full of energy I'm trying to work out if that's what brought it on or was that it coming on ??? not sure , I too worked for a chiro in my 40's, but when you have had meningitis we are not allowed to see one so I was told, probably because of the neck, the little tens machine that I used is only battery run got it off ebay I really don't know what I would do with out it, helps no end ... so with you how far apart were your 6 bouts that's terrible , every time ive had it I have had really bad thoughts that there is no way im going thru that again but I get thru, sometimes I guess we are tougher than we realise, this last time I won't call it my 5th as it wasn't full blown but I'm wondering how long the larthargic feeling will take some days is better than others the worst is the pressure pain in my head I don't take anything to stop it as nothing does anyway... does anyone have any remedys for that?
I have. The one doctor thought for sure I had Mollaret's caused by Herpe's because my first 3 bouts went down in intensity but the 4th time I had no sign of HSV-1 or HSV-2 in my spinal fluid. The 5th time they say I didn't have it because the spinal tap was negative, they say I had a migraine, ummm, no that was not a migraine! I think I would classify my 3rd and 5th time as mini bouts. They didn't last as long and really I could have skipped the hospital trip the 5th time (I did the 3rd) but I'm trying to find the reason so I can maybe prevent future attacks. My attacks average 18months to 24months apart. But I did go 36 months between 3rd and 4th so who knows? I went for two years with daily headaches but am on a new daily medicine that seems to helping. Don't give up. You just have to find out what works for you.
I take Valtrex daily forever ... as the last neurologist said i hate to tell you this but all the tests show that you have the v.m. that kills you , so you need to go to hospital immediately so that was the last bout in 2014 ... was in there for around ten days.... as he did more tests on me than any other doctor bothered too .... anyway since this last bout ive been really trying to rest and not stress but life as it is now is causing a lot of stress since before Christmas last year one thing after another and im sure that's what brought this last bout, i was stressed to the max
Thank you for posting this. Yes, it is rare enough that so many docs go without having run across it and aren’t with the patient long enough to see the extreme difference before and after diagnosis. I’m an athlete, well was, and one of those people who is always doing 10 things at once. I’m happiest when I’m active and I just can’t stop creating. I’m about 1.5 months out and tried to go back to hot yoga and got my fanny handed to me. I almost passed out and I had to go home. It was embarrassing, sad, frustrating and also scary. Certain times I feel pretty good. Then out of nowhere, with no warning, I almost feel close to how I did the day before I finally went to the hospital. I hate to admit it but I told my husband some doctors need to get it to finally realize people aren’t just making the crap up. I’m forgetful (WAY more than normal). Certain times I don’t drive because I feel my reflexes are too slow. I never used to get headaches and now there is at least a constant dull one every day with the occasional ranger early morning or evening. And way too many other symptoms to list. Plus some are so weird that I don’t understand how to explain them. I don’t even feel like the same person I was before this all started just months ago. I think that medical providers who have gone through this really need to band together and write something to the medical community to help make change for partients.
a month since you have had it !!! your pushing yourself too much , god it takes me a year to get over it every time I have had it, take it a bit slower go for small walks and only do what you know you can listen to your body you have to learn that now , please don't expect so much of yourself, it will all come just give yourself time ...
Yes, thank you. Learning it the hard way The crazy part is that, compared to how I was just a couple months ago, this IS really slow. So it’s just very hard to understand this new and hopefully not permanent normal. It can do warm yoga and have dropped back to an easier class. Sad though because I was pretty advanced but it still feels good and I do it fewer times a week. Much more mellow. I know my body well and am really kind to it normally...if I feel it getting tired I pull back and really rest and relax...as a breast cancer survivor I had to learn that. The issue with the meningitis recovery experience is that, prior, my body would communicate gradually. Now, it not being able to do things can be with zero exertion and zero warning on certain days. It’s a whole level of body communication I’m having to learn by screwing up a few times. I’m sorry for all of you who have had this multiple times!!!! I simply can’t imagine going through this again. As a survivor of cancer and numerous surgeries, meningitis was much more painful and scary in all honesty (not to diminish the experience of those who had more advanced cancer than mine).
yes I can't imagine totally what the cancer was like but ive had many family and girlfriends that have gone thru it including leukemia, but I can't imagine anyone going longer than 7/10 days with this sort of pain .... I don't think I would be here well I know I wouldn't as you just couldn't bare it any longer than that, and with all the med's they give you when you look back its all a bit of a blurr, except the dam needles my veins usually collapse and can't deal with all of the tubes, so that's not nice I have scars on my wrist from this .... yes thinking I could get a full blown v.m again scares the hell out of me the older I get 1998 2002 2012 2014 the just now feb 16th I woke with it again and I was so so scared so upset I was determined to stay at home and thank god I did as it was a mini bout, but today im still feeling so low giddy ... stiff neck ... pressure pain in my head,,,, but I guess im on the better side now .... have to make sure I don't stress and keep a bit healthier now, I live alone so its been hard, all I worried about was my 2 dogs ... ... and keeping enough batterys for my tens machine so I would get some relief with it on my neck ... anyway im glad your on the mend ..you have been thru so much hope you never have to endure this hideous disease again x
after 4 bouts each time it takes around a year maybe a little more , but you just have to know your own body we are all different and so are our bodys, its best too keep your body healthy as possible, yoga isn't that over doing it, but a month after yes definitely lol is, I think the year to cover is to feel perfectly back to normal again, hopefully, but little things do hang on like getting tired more easily and the light does effect us, little things and things that we can live with...each month is another turning point ...
Until i found this site i felt like i must be exaggerating doctors told me the infection is gone the symtoms you are feeling cant be from VM. I had VM july of 2018.
I have yet to feel normal. I definitely get tired much faster than previous VM.
There are so many things that just arent what they used to be.
I went away for 4 nights to Kripalu, yoga, stress release. I enjoyed every minute and learned some stress management tools.
I am going to share my most recent experience.
On feb 22nd 2019 my daughter went into labor 12 days early with my 1st grandbaby. I am thrilled, above and beyond grateful! She didn't deliver Mia until 12:45 am and i was in the delivery room with her. By the time i got home and relaxed enough to sleep it was 4 am i had to get up at 7:30 am.
All was great and then that night the headache started just like the night before i ended up in the hospital. Made me nervous, and over the next 2 days i deteriorated. I then spent 3 days practically in bed. No appetite, no nothing.
1 night with little sleep.and i went down like a plane in a crash.
Frustrated, overwhelmed, tired of making appointments or meetings that i have to cancel or reachedule. I never know when its going to hit.
Struggling with a balance since i was always a go getter!
I'm sorry that you are also going through this. You are so right...it's an illness that is mind boggling because the normal body warnings just aren't there. People tell me, "Take it easy." The thing is that I AM taking it WAAAYYY easy. I'm barely doing a quarter of the things I did on a daily basis before. The problem is, there is just no way to know whether this one thing you do or that one thing you do is going to be the thing that makes you able to do absolutely nothing the next day. I went to dinner with a friend last night only the 2nd time since vm (diagnosed mid_jan). I had 2 drinks over 2.5 hours. Then we hung out in her hot tub and talked about life for about an hour. I needed to get out and just have some friend time after so much time stuck at home. That should have been relaxing and enjoyable. I got home and my body crashed. Now I'm in bed on a Saturday wishing to be running around enjoying the day but even getting up to make breakfast is a chore. A few things I have found for myself as I learn a bit more about this and what is 'working' for me, 1) I was really sensitive to caffeine before meningitis so I would drink decaf (the small amount of caffeine in decaf was more than enough for me). Now, even decaf is a NO GO!!! It feels like drinking full caffeine so I guess just heightened sensitivity. 2) I have tried to have a glass of wine a few times. I am not a big drinker but I like a glass or two about once a week, and sometimes more if I am having a fun night with friends. Forget about it! Alcohol tastes terrible and even though I had a couple last night in hopes of just 'being normal' again, it wasn't worth it. Body says no! So, just not even going to do it for a long time which is no big deal anyway. 3) Limiting social activity time...this is a hard one for me because I am social person and really like being around people. However, I have noticed I have to have quite alone time a lot right now and I get too tired being in a social situation for longer than an hour. Plus, my energy while visiting is visibly lower. I'm just not the same person right now and that can be hard for people to understand. 4) Ignoring the irritation that other people don't get it, don't believe it could possibly still be going on, and the sad fact that unless it gets worse it isn't worth seeing doctors about. The doctors say nothing helpful and mostly just think you are being dramatic.
Mostly, I just want to say to the people who have had this multiple times, I am so tremendously sorry. I'm not handling going through it once very well. I can't possibly imagine having it multiple times. Every single day feels like you'll never be normal again and the pain during the worst initial part is horrendous. Sending hugs and support to all who go through this especially multiple times!
Like you, I have always been the "fun girl". But, now I can't anticipate what will make my symptoms flare. Even good exciting things, like your night out, can make me start getting weird. That's why what I call it. I am approximately 4 months out and, while I don't have the terrible headaches, I get panicky, shaky and foggy in my brain easily. Sometimes I swear if I go ahead and make myself go for a walk with my dog I feel better. Then I think was it anxiety instead of symptoms. This stuff is making me crazy. Everyone says rest, rest and more rest. And while you HAVE to rest I think too much when I am still. The uncertainty is awful. God bless us all.
oh dear Amy im so sorry, but things will improve as the saying goes time ... that's all it takes.. atleast the worst is over each month that goes by will be a month closer to getting better, I am trying to take it slow but like you said im a person that cant sit still and like to keep busy so its hard when we have to remember not to tire ourselves out, I go outside to the yard and mow the lawn come inside end up on the shower flaw feeling so exhausted and with this heat here in Australia hasn't helped I really cant wait for winter for a bit of relief, well I hope your recovery continues to get you back on top so you can enjoy your granddaughter ... xxx
So sorry to hear this. Hopefully, never again. But if you feel funky, please return to the hospital that did the spinal tap. They now have a history on record and 1 night that history could save your life.
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.... nothing gives me relief like it does and only a cheap one off ebay
so that's not nice I have scars on my wrist from this 
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