viral meningitis

[SLC2023]

hi there

I have found lots of comfort in hearing I am not alone! I am 31 years old and I got viral meningitis in October 2023. I took the rest of the year off work (I am a teacher) and thought going back to school at the end of January was plenty time recovery.

Over the time off; my headaches everyday continued, lack of energy and complete body aches (in the weirdest of places- mostly my jaw and collar bones!!) but there were days I was better. Some days I was around 80% good. Others not great but overall felt like there was some improvement.

Now I have returned to work and I am completely wiped everyday. Like have to come home and sleep everyday. Struggling to keep going throughout the day without mindblanks and forgetting what I was doing. My constant headache is awful at times and the vertigo has become daily. My body still continues to ache allllll day! And I definitely feel worse than I did.

I keep hearing “oh you didn’t have the bacterial one so you’ll recover quickly and it’s not as bad” but it feels like it’s never ending. So it feels I should be fine but I’m not.

Has anyone else experienced this long a recovery from vm?

Thanks!!

[Njc88]

Hi SLC - I am 32 and got VM in November 2023 so I can relate! My recovery has had its ups and downs - I felt better in mid-December but also experienced burnout returning to work in January (and then it got worse once I came down with a stomach bug). I have had the same symptoms as you - headaches, body aches, and dizziness. If you can afford to take more time off I would. Based on everyone's accounts I've read here, I think time is the key to healing (and resting as much as possible). We will feel better!

[Lidldidl]

you’ll find you’re definitely not alone with these symptoms & going back to work in January expecting a bit much. I got it in October, was in hospital for 5 weeks (granted I’m a lot older than you, but what you describe is exactly how I (& many others feel). Luckily my doctors here had warned me not to expect much improvement for at least 3 months. Also not everyone’s brain handles this horrific disease the same. Keep positive & listen to your body’s needs. I need to lie down after a shower & can’t walk without a stick & hubby’s arm. If I can face it we go for a walk around the block, if body says no, I walk up n down the passage for a leg strengthening exercises. Be kind to yourself SLC xx

[Walkingintheforest]

hi there i had meningitis in march 23 and i could start working again more or less normal (office work,self employed) in january which means 11 months later.before i could not even work for more than 5 minutes,i felt sick. I did not have any pain but was very weak and had problems with my circulation sometimes..thought i am collapsing…in the end it turned oit that i also have a leaky gut resulting in the high amount of antibiotics i got…also i went to the osteopathic as my back also suffered from it and they said my vertebrae are shifted…maybe you can also check out these doctos and it helps a bit!in my case i had three problems,first was simply time for my nerves to recover,second diet and omnibitobis for my colon was not functioning any more and third, my spine…! But it took a while until i found out that there are probably more problems resulting fron this illness.my neurologist always said my blood is fine and i am healthy but it did not feel healthy at all.maybe there is more you can do too!!! All the best!!

[Lola0902]

I had vm in December 2019 and I still suffer from it different things but it’s still there

[JJ2468]

Hi,

I'm sorry to hear you're struggling still. I can definitely relate- I am 37, and got VM in May-23 and was in hospital for a week before going home and being completely out of action.

I went back to work a couple of months later on a very slow phased return (3 hours a day to begin with), and returned to full hours in January.

I'm now 9 months in and although the worst symptoms have gone (at worst i struggled to walk, speak, hold a pen) and the remainder (photophobia, headaches, neck pain, fatigue, brain fog, tinnitus, sensory processing, pins and needles, occasional dizziness) have improved, they are still very much there and are a battle every day.

Full hours at work when i'm in the office mean going to bed when I get home, and days working from home are tiring but more manageable.

If you feel worse that you did before, I would recommend going to GP and pushing them for investigation. After tests i have also been diagnosed with hypothyroidism which they think was triggered by the VM. Also have now been referred to Neurology, ENT and Chronic Fatigue service so just waiting for appointments which are taking a long time. Try and get the ball rolling if you can x

It's a strange new normal to get used to and i'm still hopeful things will improve, but for now i understand your concerns and frustrations and i think it's about managing your expectations and not expecting improvements too quickly.

Be super kind to yourself and rest as much as you can.

Also (it's not for me to recommend any of these but just things i've tried that helped me personally)- chiropractor, acupuncture, sacral cranial massage, and a sound bath- a little relief and at this point i'll try anything haha!!

I also know it can feel isolating. Keep positive and you're not alone- everyone here has been great. Wishing you the best with your recovery x

[Cstach1]

Hi there! First of all, I am so so sorry you got this awful disease. I was diagnosed with viral aseptic meningitis and encephalitis in October of 2022, as a side effect of my immunotherapy for metastatic cancer. I was in and out of the hospital for three weeks before they finally did a spinal tap, and I was in the ICU for a week afterwards. I was discharged with a ton of steroids for adrenal failure, and it took a full year to taper off of them and switch to a different type. I just “graduated” from those last week.

I couldn’t walk or see straight for several weeks after I returned home in November 2022. I still had fatigue, brain fog, mood swings, body aches…the full gamut of symptoms for at least 9 months. The physical symptoms of vertigo and vision issues have subsided; however, the mood swings and general brain fog persist. My neurologist actually recommended I see a therapist for PTSD. I say this to encourage you that you aren’t alone. I know how it feels when people think viral meningitis, while scary, is a quick recovery. It’s not. I am quite lucky to have a saint for a husband who has put up with me the last year and a half since this started, so know there are others going through it. Feel free to PM me if you need to vent!

[Rossibob1]

I felt like that after VM went to the doctors to see what was going on because I could sleep 14 hours and still be tired.

The diagnosed me with hyperthyroidism.

Which was strange as hyper is high and hypo feeling tired you would think hypothyroidism

After many months of upping my does by 5mg of Carbomazole I am now starting to feel like a normal-ish human being .

Hope you feel better soon.

[Portage]

See an immunology doctor not an allergy doctor. I discovered my IgG’s were lacking, got treatment and vertigo is gone. Research MTHFR.

I had VM 60 yrs ago and have suffered like everyone else here. I tell all docs …I’m NOT in your medical books! Be your own advocate and maybe one day there will be research.