Hi. My name's Suzie. I was diagnosed with viral meningitis after contracting influenza about 3 weeks ago. I don't really remember much of the first week when I was in and out of hospital - but since being home (and obviously off work) I am feeling a lot better however I am still experiencing headaches, nausea, vertigo and exhaustion - it makes me cry because I'm used to being really busy and now I have no energy. I just wanted to get some advice or to hear others experience from VM. When you google VM (ironically i am a healthcare professional, so I know google can be the worst), it says the average person recovers in 7-10 days. I therefore feel like a fraud for still feeling awful at times still.
I just wanted to hear from some other people about how they're coping with post VM symptoms; or if I need to just man up ?
I look forward to hearing from others soon,
Suzie
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Suzi3m
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LOL 7 days recovery, more like a year, no way you are able to leave hospital after 7/10 days but your not recovered no where near, its just your not feeling like death....as I have had this 5 times now and each time I just want to go and when its over I can't believe ive made it thru yet again...you will have lots of little things that will bug you , but you will learn to cope with them you have, so for no 1....be positive and strong willed, believe this will not get to you, you will beat it in the end, you must not get down and depressed or let your immune system suffer, the Neurologist told me they were very important to keep healthy there is a few natural anti viral vitamins that people on here have suggested that would be good to try to keep your immune system healthy like
Red marine algea, lysine astragulus and olive leaf, I cant tell you if they work as ive only just started on them, but I would give anything a go its not going to hurt you, It isn't going to be easy and go in the wink of an eye , I don't want to be the bearer of bad news but you really can't expect to get over this quickly mind you everyone's different but each time and I think its quite normal to say 12/16 months of symtoms stll persisting , some little annoying things that honestly you will deal with them in your own way. from getting giddy for no reason to your eye sight being a bit pathetic I had to get glasses after this last bout and I cant do without them now, also you might get a lot of stiff necks, rashes you can also get mini bouts of vm, which I had in February but its now May and I am not over it yet I think it will take another 8 months atleast to feel ok, I jumped on my bike yesterday and got straight off I realised there was no way I could go back to riding it my coordination was really out, that was upsetting, mornings are hard when first getting up I feel a bit groggy like a bad hang over which disappears thru the day …. the little tapping in the top of my head that was feeling so dam bad till 3 weeks back has died down heaps, but that will take a lot longer to subside I guess...I don't dare presume or ask you if your a Christian but I am and I believe in prayer so if you are I would definitely try that as I believe that has helped me more than anything else...other than that if you ever need some help or to ask anything most of the people on here get back pretty quickly and are good to talk to … so goodluck on your journey and I do hope you don't have to go thru it again... x
Thanks for your reply. I’ve rang work today saying I really don’t think I can manage to go back next week and I feel awful for it. I’m going to go see my GP on Tuesday.
I was wondering if you experienced the same headaches, they’re all over but mainly at the base of my skull and top of neck area; it’s almost a burning sensation. If so what helped you?
I had vm in July 2017, so almost 2 years ago. I was also given the 7-10 days to recover. It’s rubbish. No one I’ve spoken to who had vm has recovered that quickly. I’m just starting to feel back to normal now after some cranial
Oesteopathy that meningitis now organised.
3 weeks on is very early days. I have two young boys & I struggled massively following the intimacy illness. I wasn’t used to sitting down doing nothing & resting. It’s difficult to do that I think if you’re normally on the go.
I had some ongoing symptoms for many months including pressure at the back of my head, headaches, fatigue, confusion.
I had 3 months off work, 4 months on a phased return & then it took another 3 months of being there full Time before I finally felt Like I knew what I was doing there if you see what I mean.
Frustrating advice but you just need to listen to your body, rest when you need too & NEVER feel guilty for still feeling ill. Your body’s still gone through something horrendous & you need time to heal.
I was wondering if you experienced the same headaches, they’re all over but mainly at the base of my skull and top of neck area; it’s almost a burning sensation. If so what helped you?
Hi, yes. Had headaches in the place you described since the vm. It starts as pressure under the skin (kind of like a balloon is slowly being inflated there). Then it would turn into pain would which spread to the rest of my head if I wasn’t careful
Hard to say what helps. I noticed it got worse the busier I was or the more stressed. It wasn’t a stress issue. I just needed a calm, quiet environment to recover in which is hard to come across with 2 young children. So I slowed down a bit. Sat down a bit more. Let my partner know when I was struggling so he could pick up some of the slack. There’s something called forehead for headaches that kind of helped a little. I’d put it on my temples & at the top of my neck/base of my skull. Would tingle a little & was more of a distraction than any proper relief. Probably not what you want to hear but rest is probably what you need. You’re still very early on. If you do work, don’t let them send you back too soon.
The cranial oesteopathy I had recently had really helped dissipate what I hope is the last of it.
Don’t listen to the 7-10 days. I think that’s just for the initial symptoms. Most doctors don’t know much about vm & quote the textbook which is just wrong.
Recovery takes as long as recovery takes & it’s awful that they’re still giving this unrealistic advice.
I had those same HAs as well! Base of skull and neck. I also would get this pressure sensation like I was suddenly wearing a hat. So strange! It's pretty much all gone at 6 months out.
Contracted VM the same way as you did...The flu then VM....Been at home since March 2019 with the same symptoms as you...Plus lower back pain...In Physical Therapy for the back pain...Some people on here states they were off almost a year with after symptoms of VM....
Here’s in the US they same the same thing 7-10 days. As a fellow health provider and as someone who is still in recovery I get it. I was diagnosed in January and yes I’m much improved but I still have a ways to go.
As a health care provider the hardest part of this was was educating my fellow colleagues that this is not a 7-10 days process and challenging them to think outside of the textbook and that was exhausting. But you will have to do it unless you find a someone who’s has experience with this. I’m still trying to find a good neurologist.
I’m going be honest recovery is Slow 😔, but it DOES get better. I had to learn and you will have to learn to be patience with yourself. Give yourself credit for the things that you are able to do that day you couldn’t do the day before ( yes small victories matter). Stay positive- this is hard cause I did cry in frustration to be the “old me”. Crying is okay too you have to grieve.... but just don’t stay there too long. Well I’m 4 months post VM and I am able to drive by myself now, I started back walking and I hired a personal trainer to help me safely get back in shape. I’m back at work, I am still very careful with the amount that I can do and for how long. I’m able to go to the store and run errands to include shopping and other things. BUT I do have to remember my limits. I do these things but not at once. I wanna be honest I do have to chose what will get done and I have to be careful not to over do it. I still get headaches if I don’t stay hydrated or if I do to much. Sometime I get lighthearted outta nowhere, muscle spasm at night and this darn stiff neck still comes and goes.along with some other things that come up, so I would say I’m 70-
80% back to my old self. But I am learning that I have to redefine my old self because this definitely has changed me.
The only thing I can say is new that I like about being post VM is I don’t sweat the small stuff. I don’t give energy to people or spaces that are not productive. I have to fight for every bit of energy that I have so I dont want to waste it and it actually keeps me in a good space.
Hand in there! You will be fine you just have give your self time and when it’s time to push your body will tell you when and how much. Trust yourself and listen to your body. I’m praying for a speedy recover for you. This group is amazing you will find it very helpful.
The first time I had VM I had to recover in 7-10 days. I had 4 children that I had to take care of and the doctor was no help. I remember laying in bed for days. My oldest was trying so hard to pick up the slack and to help with things like laundry. My husband was just trying to work and then feed the kids and keep up their activities while I just laid in bed moaning in pain. It was awful! Healthcare back then (15 years ago) was even worse than it is now, although in my opinion it is no better I have just found slightly better doctors who will listen. Mostly because I have since moved to a new state and the last two times I have had VM (2014&2018) I went to ER and suffered through positive spinal taps so I have it on the record for a diagnosis of recurrent viral meningitis of unknown origin.
But bottom line is that we are all different. Healthcare can be of little health. Use the boards as a sounding board (crowd sourcing at is absolute best!) to give you a baseline of what might help you. I think the general consensus is to take it slow and realize that google is absolutely wrong. You don't need to "man up". You need to realize that you have contracted a disease that is horribly under studied, misunderstood, and that is going to kick your butt for maybe months (if you are lucky) maybe years if you are not. You need to do listen to your body and take it slow so you can move on and not have any relapses or ill effects later. And most people don't get it recurrently. Just a some of us lucky ones. Lol.
Glad you found the community. It has helped so many of us! Good luck on your journey. You got this!
I was diagnosed with VM in early Jan of 2018. Hospitalized for 11 days. They told me 7-10 days as well. Well it took me months to have the head pressure go away. I was exhausted and I am a runner and hiker. Normally have tons of energy but was down with exhaustion for quite some time. A nurse in the hospital pat at night would come in and tell me about the importance of nutrition for my immune system to rebuild it. She suggested a few things which I did. 1. Intermittent fasting (go at least 14 hours without eating from dinner to breakfast). 2. Low inflammation diet. So she had me cut out dairy, sugar, gluten which I did and still do mostly now 15 months later. 3. Rest and rest. 4. Vitamins 5. Lots of water.
I couldn’t run or hike for months. The month after the VM I got the flu and pneumonia. A month after that got a sinus infection. Lost my voice for a while. I began to get depressed and was isolating a bit. I also noticed I wasn’t as outgoing and didn’t talk to most of my friends for a long time as well. Apparently many others have that too. Perhaps it was anxiety or depression. But I felt I was becoming a different person. Felt there must be something wrong with me that I wasn’t back to me in 10 days like the doctors all said.
Anyway happy to say that after months of that today I am 100%. I run almost daily and hike 8-10 miles every weekend. I started feeling better about 4 months out and got better and better. Was slow and I hated the needing to rest a lot part but I tried to stay positive.
Last thing in the early weeks i read this forum all the time. I was scared as many have really difficult outcomes. But I read a post from a man who like me fully recovered and was running marathons again. He gave me hope. Keep your hope, rest, don’t let the doctors make you feel crazy and let people here support you.
Thanks so much for this. I am a week out of hospital and as a dog walker normally hiking 9 miles a day and swimming every day I am totally terrified of this being taken away. I have had to fight to keep moving already due to having Lupus and when I got VM I couldn't believe another thing to try and strip me of... me. I have been scared for the future and don't know what to do for the best as I feel recovered when stationary but as soon as I walk, or exert, it smacks me back down. This gave me hope.
You will get your energy back and be hiking and swimming again. Be patient even though it’s hard. Yes feeling like you are losing who you were was so hard for me. But I held on to the positive voices of those who felt like we did and worked on regaining strength and got back. I also used to visualize myself out hiking and smiling. I am hiking now more than ever 3 years out and never felt better. I don’t get headaches anymore. And I am grateful daily to be alive and healthy. Take good care and see yourself back better than ever. Just take it slowly.
Hi Suzi. Sorry you are having to go through this. I am exactly 2 years post VM. I spent 7 days in hospital and was off work for 8 weeks. When I went back on reduced hours and a step up I still found it a struggle as I was so exhausted, still having dizziness and frequent headaches. I was fortunate that my husband was relocated with work and I had to leave my job for us to move. We relocated to the USA and I have not worked since then. Rest, rest and more rest is really the answer. Listening to your body and not pushing yourself too much. It took the best part of year before I began to feel "normal" again and it has only been the last 6 months where I have really felt back to full health. I still experience frequent migraines/cluster headaches but manage these with Sumatriptan. I also still get aches and pains and stiffness in my neck and shoulders. I have the odd off day where I feel totally exhausted but usually after I have been very active and done too much. Generally my energy levels are good again and I am able to exercise. Yoga has really helped too and I also take a variety of supplements - Multi Vit, Omega 3, B Vits...
Be kind to yourself and listen to your body. VM is a horrible illness and we need more awareness out there of the long lasting effects it can have. Wishing you a good a recovery.
No manning up. This is one frustrating illness that is probably harder on smart people. Lol. I am now 3 1/2 months in recovery and probably 70% recovered. I was off work from end of January through March 5 but I was off a good bit of January because I was undiagnosed for at least 3 weeks. I still have numb spots but they come and go, head pressure, general crazy feeling, weird appetite, urination and pooping different. They told me none of these possible symptoms when leaving hospital. One thing everyone tells you is rest a lot when you feel you need to. Which you should. But, any time you feel like doing something, do it. It makes you feel better even if you have to make yourself a little. When I went back to work I didn’t know if I would be able and it actually was better for me than laying around the house thinking all the time. (That is if you are able to work and depending on job. I have an office job.) This illness is a head game and mimics anxiety at times. I have terrible shaking of my hands at times and my prayer is that I know the difference between anxiety and illness symptoms. I tried a couple anxiety meds but that made me sick. Anyway, you are very early in your recovery. I am walking my dog again but not on the trails, driving, going to stores, fishing in boat for a couple hours. I just get weird pretty quickly and need to go home and be quiet pretty quickly. I am usually very outgoing and move fast. You will get mad. I have several times because I want back to normal fast but I have also prayed and thanked God I am able to do what I can. You will get better. Just remember that.
It really is quite staggering just how ignorant the whole medical profession is regarding the recovery time and after effects of meningitis. After five days in hospital I was told to go home and rest and would start feeling better after a couple of weeks. 32 months later I'm still trying to recover with many lingering symptoms. Going back to the doctors has been a complete waste of time apart from the frustration of hearing the same old platitudes because they simply have no idea of what is actually going on. If you persist in looking for answers and a possible cure they suggest antianxiety and antidepressant drugs saying the slow recovery is caused by anxiety and depression. The whole lot of them urgently need re-educating.
Guess I am the opposite as my team of doctors were extremely helpful with treatment and told me right off the bat to be patient as it will be a slow recovery. Granted I do have cryptococcal meningitis, which apparently is quite wicked. After a few symptoms started to show my family tried desperately to get me help. My PCP, 1st neurologist, 3 day stay at a good hospital and they couldn't diagnose it. I was referred to another neurologist and within 2 days he figured it out. In a 2 week time frame I lost all hearing, short/long term memory, thought process to function normally, couldn't stand unassisted and walking was out of the question. Once a spinal tap confirmed what an MRI had shown they started treating me aggressively medically to get this out of my system. Has been 8 months and everything except my hearing has improved drastically. I am still deaf and even Cochlears may not help due to nerve damage. This is the toughest fight of my life and the toughest thing I have seen a person go through and still live/recover. Stay optimistic and don't let meningitis take you down!
Hi! I had this random urge to log back on this site and post an update about my VM experience so it would be reassuring to someone else. I was dx'd with VM back in mid November. It began with a low grade occipital headache (HA) for a few days that I just couldn't shake and pressure above my R eye so I initially thought I had some wonky virus that was just making me feel "off" - never had a fever or neck stiffness (did have neck tension/pain) so I had quickly ruled the idea of meningitis out in my mind (I'm also in healthcare!) The headache was finally bad enough by day 5 that I couldn't lie down and just felt really awful. I went into the ED not expecting much but the physician I saw was genuinely concerned since I had no prior hx of migraines or even consistent HAs. They did CT to r/o aneurysm and recommended a lumbar puncture. The LP samples were contaminated with red blood cells (d/t traumatic puncture) so they ended up doing an MRA as well just to make sure there was no brain bleed. I did have an elevated WBC count in my CSF though so at that point they called it a viral meningitis and sent me on my way after 14 hours. Ugh! So... 7-10 days is a bit misleading. Maybe, an average VM case without complications has significant symptoms for 7-10 days... for me, the acute phase (horrible fatigue, headaches, tinnitus, dizziness, nausea, etc) lasted about 2-3 weeks. I was fortunate in that I could get up and move around mostly... I was on this strange pattern of 2 good days, 1 bad day for the first few weeks. I returned to work the week following my diagnosis and just took it really easy (easier said than done as I have a toddler and work full time!) I would say the residual symptoms that come and go do last for several months. It's not an overnight recovery but I had to remind myself - and you should too - that meningitis is a low-grade brain injury. My most bothersome symptom of all was actually insomnia (difficulty falling asleep and staying asleep) I also had persistent anxiety for the first time in my life! All of that said, I am happy to report that at six months out, I feel pretty back to normal and have been for the last month or two. My sleep is back to normal (I actually feel tired at night and can stay asleep) and my anxiety has calmed down a lot. I have very little residual symptoms at this point. I was feeling good at about two months out and then started to feel kind of crappy again... I did end up doing craniosacral therapy (per suggestion of other people on this site) and would highly recommend it. Anyways, I hope this an overall helpful recovery story! I was not overly debilitated except for the first couple of weeks and just gave my body time and tools to heal. Have some grace with yourself!
I still get pain in my scalp when I brush my hair. It almost feels like bruising even though I have had no head trauma, just VM. It's been 4 months N yea I'm getting better but not as lively as I once was. I'm starting to look for work again
I am almost identical to your story . I am 11 weeks in and still feeling all the symptoms plus massive hair loss. I too feel guilty for not having any drive. Im about to return to part time work next week mainly because of the guilt. I hope they will be sympathetic to the conditions I am experiencing. Take care and notice all your bodily experiences to enable you to recognise how much rest we need to enable recovery.
I had VM as a result of West Nile virus two years ago. Hospitalized for nine days then on full med leave from work for four months. Exceptional fatigue, inability to focus and general malaise. But I had a full recovery after the 4 months. I hope your recovery goes well, but give it time. VM is a really serious disease and you need the time and support to recover
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