I was diagnosed with VM in emerge after a lumbar puncture…. That was end of August ‘23 & it’s now January ‘24. Does anyone have a timeline they can share from their experience?
This is a disheartening journey & I am trying my best to stay positive and know the symptoms are not forever 🤞🏼🤞🏼 the doctors have no insight as to when “normal” returns and said it’s a waiting game & that there are not many studies for them to refer to 🤦🏻♀️. Would love to hear any timelines for your recovery - thanks in advance 💕
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C-Northerner
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my wife had vm starting mid-October 2023. She couldn’t speak, couldn’t walk, was basically comatose for a week. Was in hospital for 2.5 weeks. Came home in a wheelchair. By mid-January 2024, she’s about 90% back to where she was before vm. Still has some short-term memory issues. Gets pretty tired by noon. Has dizzy spells. But can now walk without aid, though not always in a straight line. We’re hoping things continue to improve.
wow, I am so sorry had that insane experience. I have some days that are great (they are few but it happens) and it’s so hopeful and then the opposite occurs. I probably am lacking patience but it’s so tough when life doesn’t pause with you (I’m an exec in my professional life & a single mom of a toddler).
Sending nothing but kind and loving thoughts to her and your family ♥️♥️
First of all let me tell you your not alone and it is very much early days. Your in recovery and things do get better. This nasty disease takes a toll on your body in many ways. It can make you feel low not to get back to the you that you were before. Everyone experiences it differently and progress will vary. You have done so well to be here defeating the illness, try not to be hard on yourself. From my perspective I'm a lot older - 57 and had bacterial meningitis with encephalitis, pneumonia and hypercalcemia at the end of 2020. It will be four years this December - I was in recovery for quite awhile but I did get better in many ways. I researched into natural remedies and supplements which I take regularly. I got a pup and trained her to walk with me as I now use a walking stick. Yes I have accepted that this disease did damage my body but I've overcome a lot of obstacles. I recommend a healing salt lamp this calms the mind and helps the body too. Being a lot younger than me I'm sure that you will recover too in many ways and hopefully back to how you were before. Last year in June I managed to get back to part time work from home with adjustments. I did go through depression but came out the other side. I do send you many kind thoughts and warm wishes to you on your journey. I'm here if you want any further information. 💖
Thank you for sharing your story. I will definitely check anything out that can help. I’m getting another MRI and Iumbar puncture again… see if anything turns up on those.
Uk here 👋... i had vm last year on valentines day lol i ended up in hospital for 2 weeks, the docs were unsure how i got it but then found it started in my ear canal, (caused by my cancer) my after symptoms were similar e.g, memory lose, balance issues, low mood etc... then in early July same thing happend again but more serious condition in which i had near death experience 😔 Iam now currently on antibiotics for the forseeable future !! The main thing is iam still alive and thankfull but times i do think WOW, why me ??
I have recurrent VM, 7x in 15 years. Don't worry-that isn't the norm! I can say that the only thing you can count on is that everyone is different. You need to slow down and learn to listen to your body. If you are tired, rest. It is the most important thing. Just listening to your body and giving your body time. You had a major virus in your body wreaking havoc and your body needs time to recover. I've had flare ups that took me close to a year to recover and flare ups that I was back to normal in 1-2 months. There is just no consistent norm for recovery. Thankfully I have never had major symptoms that some suffer. I mainly have vertigo, chronic fatigue, neck pain and horrible headaches. They come and go in the months after a flare up.
So again, learn to listen to your body. Absolutely try to do things but if your body is saying no, then stop. Lots of rest and hopefully day by day your will start to feel more like yourself.
I read this & have been absolutely doing what I can to honour my bandwidth and not push through (as per usual). Thank you for sharing your story / looking forward to this getting better. For the meantime beta blockers are helping my headache.
I am still semi baffled that the medical professionals keep telling me that VM doesn’t have reoccurring problems & that this isn’t normal… from this group alone, that is complete bs. It makes you question things when the doctors are looking at you as if you are making it up.
Everyone recovers differently. Go gently and listen to your body, rest and sleep will heal your brain faster than anything else. I have recovered slowly over 4 years from bacterial meningitis and sepsis. Fatigue and headaches were a daily challenge. I learned to pace my life and rest a lot. Things got real simple. I had cranio sacral healing initially and still take homeopathic natural medicine which has helped so much. I am now able to travel long distances and took an overseas trip recently. Its not a quick fix for most people. I wish you all the best as you heal. 🥰
Thank you for sharing. I am going to see a naturopath. I really want to explore every option - this really isn’t anyway to thrive. But definitely honouring myself and healing.
Im so happy you were able to do that! All the best on your future adventures 💕
hi there!! I had meningoencephalitis in march 2023 and i can now say (11 months later) that i am pretty much getting back on trail.still a bit tired,phyical work is still exhausting but the most imprtant thing is that i have my life back.i can work,i can take care of my children,i can go out. But it took a while…!!! There was a time when i thought i will never be the same person again but now i see things differently.it takes a long time.much longer as most doctors say.but it will always get better.sometimes a few steps back but in the end it will be fine again!
hi C-Northerner, wish I had something encouraging to share,
I’m in the same place as you, In October spent 5 weeks in hospital, 4 of those on IV antiviral drugs. Kidneys, chaotic liver, digestive system, hearing & vision. brain fog, balance, vertigo & exhaustion. Thus far it seems no one has an answer for us. In December my hair started falling out & I’m at the stage of “should I shave it off & pray for new growth. GP yesterday ordered a full blood count test to see it any supplements might help. Like you I’m desperate, depressed & anxious for the old “positive me” to return. 🙏🏻. After all - I am grateful to be here & not deceased xx
I felt the exact same/ had a very similar list to yours- the virus rollercoaster is one thing but the mental is a whole other battle. I’ve cried a few times to say the least but am also thankful to be here ♥️. I hope we can both get some answers, I’m leaning on anything that can help (naturopathy, massage therapist, acupuncture). I’ve started new meds today that the neurologist prescribed… really hoping they work 🤞🏼feel free to reach out anytime ♥️
I’m also trying to lean into - things just aren’t okay right now, and letting that just be. They will get better but it’s just hard right now. This is a health and healing phase (trying to accept that). Sending you support energy - you aren’t alone ♥️♥️
I am 10 years on since VM the first two years were very difficult, in hindsight I should have taken 18 months off work but thought I could beat it. You need to take one day at a time and do one thing each day as you move forward. A doctor explained it very well to me.when I was struggling with recovery. 'When you cut your leg, does it leave a scare? Your brain has been pressed and we really don't know what effect that will have on you' and as my Wife says. VM has changed me!!! But that has made me look at situations differently, and in some ways made me a better person.
I had VM in 2017 and it took me approx 18 months to get back to feeling “normal”. I still have days of fatigue and I get regular migraines that I manage with meds. I was recently diagnosed with Fibromyalgia. Rest , healthy eating not pushing yourself to hard and too fast is the key. You will get there but it can take a while.
I survived cryptococcal meningitis going on 5.5 yrs now. Caused permanent profound hearing loss in both ears, balance issues, short and long term memory loss, loss of smell/taste, facial paralyzation, poor stamina, etc. Some of those issues resolved pretty well, but not the hearing and at this point will live out my yrs deaf. Even implants are no guarantee. The tinnitus and pressure from inner ear damage is by far worse than simply being deaf... The infection and radical treatment caused 2 small strokes and a few minor annoying issues from those as well. I recovered drastically early on as I had degraded so much. At this point my system likely won't recover much more, but I still push every day like no tomorrow and do recall how rough things were at one point. As long as I am way ahead of that life is OK. Just be prepared to get used to a new normal, but don't give up hope and effort on maximizing recovery.
Hello I had VM March 23 it does get better! My VM gave me hyperthyroidism so it took longer for me as I was suffering from that and the memory loss, headaches and feeling tired all the time.
I think around 8 months was the turning point for me.
Everybody is different. But you are not alone. My daughter was hospitalised in February 2023. She still suffers aftereffects. It really is a day by day thing. Listen to your body and prioritise yourself
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struggling with VM recovery
Past VM and the COVID Vaccine 
I was wondering what ages and where others are from. I was told that I'm not in the \"normal\" age group to get vm.
