Viral meningoencephalitis

[Juliano_Martins]

Hi all,

First time posting here and I would like to say thank you to whoever created that space.

I was admitted to hospital on 29/Jan/2019. Here are the milestones I have been through:

- Didn't wake up to go to work - My partner saw me "sleeping" when she got home back from her work in the afternoon.

- Was unable to remember my full name, address and had a huge word finding difficulty.

- Spent 1 week in hospital, feeling like semiconscious in the first day.

- Had 2 LPs during this time (don't remember the first one - the second one I do remember - horrible experience).

- Diagnostic was "Viral meningoencephalitis of unknown aetiology"

- After being discharged , I spent 1 more week at home before going to work again.

I thought that the dizziness/vertigo would go away after 1 or 2 weeks, but I am still suffering from it, and the pressure in the forehead started after 1 week I left the hospital. It's horrible. It feels like I am being pulled down by a magnetic field.... I am still not back to my normal routine (I love riding motorbikes and I am obviously not able to do it for now)

Interestingly, on the 28/Jan, I was at home acting normally according to my partner, but I don't remember anything that happened between 28 and 29/Jan.

Does anyone have any tips/advice to be shared? I know that is has happened recently but I would like to try to rid of these symptoms as soon as possible.

Thanks again!

Juliano Martins

[TCTC19]

Hello,

I was diagnosed in January 2019 and good news it does get better.... but slowly. You have to pace yourself. If you push to hard unfortunately symptoms start to come back and sometimes you feel even worst than before. At this point I have to set my intentions for the day, when recovering each day is different and some days you won’t know how you feel until you wake up and when you do I usually just go with what I am able to do. Someday I’m full of energy ( not like before VM) and able to do more some days I’m stay in. Your body will tell you want you can’t and can do temporary.. just make sure you listen so you get back to good health with very few set backs. I hope this helps.

[Juliano_Martins in reply to TCTC19]

Thanks a lot for your message. It's the same with me; lots of ups and downs - one day you wake up great then the next one you're feeling crap. Wish you a quick recovery !

[Izzat]

Hi..

Im post bacterial meningoencephalitis in april 2016. Coma for 3 days and had seizure 2 times. Hospitalized for 3 weeks and was on acyclovir treatment..when i went out i had walking problem, unable to stand up for a long..sometimes my eyes became red if i use spectacles. I have lost memory but just a short period..till now im still did not return to work due to poor condition with visualize problem..i try tend to use a screen pc but it still hurt my brain..after one hour use my brain will send the signage that i need to stop. Sometimes i feel so dumb and useless person. Lucky i have my favourite doctor that i can share my stories at least i know they try to understand it compared when i share with my friend..they did not understand what i had go through and for them it just a normal sick and u might recover after. Please take care of yourself..keep positive and be your own advocate.

[Vmzoster]

Sorry you went through this. I was diagnosed mid_jan 2019 as well. It was zoster varecella (shingles). I've been through a lot of pain in my life but this was through the roof!! and it woudn't stop so I knew something was really wrong. My brain felt like it was turning on again off again like a light switch really quickly is the best way I can explain it...like that feeling you have after waking up from passing out (confusion, where are you, what happened) but over and over again incredibly quickly. Although they say I was speaking clearly, I was having extreme difficulty making it happen...not the normal effortless words. Anyhow, it sounds like you and I are in the same place right now learning about how real and out of our hands the long recovery is. I am reluctantly learning that the timeframe and how well it goes is mostly not in my hands. Prior to mid-Jan, I did hot hard core advanced yoga 5-6 a week, hiked a lot, lifted weights and ran. I've been an athlete my whole life. This last week is the first time I could go to yoga and I had to do an unheated class that is several steps behind my normal skill level. I am atrophied from weeks of laying around. The lower yoga class was plenty difficult for me right now and I had to rest because of it. I did try a hot class and only got through about 15 minute and almost passed out, so I had to leave. It was very embarassing and discouraging. I didn't drive until mid February because I could tell that my reflexes were not up to par. I haven't been doing much with friends because my energy level just isn't the same and i finally went to dinner with a friend of mine and then we went to her house and hung out and talked in the hot tub for a while. It was so nice to get out and just spend some time with a friend but I paid dearly for all those hours of talking and ended up in bed the next day. I literally don't feel like the same person I was before the diagnoses.

All I can say is that the ups and downs seem really unpredictable. I can be tired even when I've been resting a ton and then there are days I feel like I am getting closer to normal only to go backwards the next. I hear from several people that it's really reasonable to expect this to be the norm for at least 6 months to a year. It's only March and I am so sick of it all and just want my life back. I used to plan each day with a long list of to-do's. Now, a big day for me can be doing 2 simple things and I am spent.

I am amazed that you went back to work so quickly. I have no idea how you pulled that off! Thank you for messaging on here. I guess we just all have to stick together and remind each other that it is a long, winding, unpredictable road but it eventually leads somewhere.