Over the last few days I seem to be waking up in the middle of the night with extreme dizziness with the room spinning. It stays with me until I sit up. It then clears after about 15-20 mins but I am still left with brain fog.
Has anyone else experienced anything similar?
Hi Remos,
Dizziness/vertigo was one of my symptoms when I was early on in recovery. I used to dread it coming on. I was diagnosed with Benign paroxysmal positional vertigo (BPPV).
Even now, 8 months in to recovery I get the occasional fleeting dizziness, particularly when lying down, where I grab hold of the bed as I feel like I am falling. When I get up in the morning I sometimes feel like I am walking to one side as well, my balance can still be tricky.
My GP prescribed tablets that definitely helped. I also found raising my head with 2 pillows rather than my normal 1 really helped, I think that when I was at my worse it stopped me having so many attacks.
It is worth seeing your gp to check that you do not have an ear infection as I understand that this can also cause similar symptoms.
I hope it eases for you soon as the sensation can be really unsettling & scary.
Thank you for your quick response. It’s reassuring other people have had similar symptoms and it’s not just me. It seems like it’s something new all the time for me at the moment (I’m 3 months in). I’ve now called the GP surgery and arranged for someone to call me back. Good to know it got better for you. Are you still on the tablets? If not how long did you take them for? Thank you very much for responding. It really helps me.
Hi Remos,
In my experience Encephaliitis is so generous, it just keeps giving 😉 You feel you are getting to grips with your symptoms and something else crops up!
It's a bit hazy but I think I was on the tablets for approx 4 weeks. If I remember correctly it took a few days for me to feel any better from them and it certainly wasn't a 'cure' but definitely helped.
I think I found the dizziness to be the scariest symptom as you feel so out of control and it is so debilitating but it will get better.
Wishing you well, keep us posted to see how you get on!
Once again thank you. I will indeed keep you posted.
Hi Remos 👋
I’m so sorry you are experiencing these symptoms.. it must be really hard to deal with it and it must also affect your sleep!
The Encephalitis Society are a great resource. Here’s a page for reaching out for support: encephalitis.info/support
Hi never had that but have many nights of really light sleep
Hi Remos. Like Green Bamboo, these were some of the first symptoms I had when I first came out of hospital (3 years ago exactly!). Mine were tied in to the anti seizure tablets I had for the first three months, although they reoccurred from time to time for a while but much much less severe. Definitely found two pillows helped. Also helped with the disturbed sleep, aches and pains and digestive problems. Unfortunately you are right, it does at first feel like one thing after the other. You just think one thing is beaten and another pops along. However the good news is honestly things get better. Try and be patient and learn that none of the worst symptoms last for ever. I feel very blessed because I can now drive, and live a pretty normal life. I still get occasional ‘fatigue days’ and sudden crashes. Also brain fog and word/speech confusion reappear when I’ve over done it, but other symptoms all improved with time and you really really appreciate to good days now! Be kind to yourself. Encephalitis society are great. As is ‘Letter from my Brain’ on their website. Best wishes as you take this journey that very few people really understand unless you’ve been there.
Thank you for your caring response. It's a relief that other people have been through this journey and come out the other side to live a normal life. What a joy to hear.
Like you I hope to be able to drive again at some stage. Did you have any seizures at the beginning or did they put you on anti-seizure medication as a precaution? I ask as I had 3 seizures in quick succession at the start of my condition but have not had any since and wondered what the process is to come off the meds to start driving again.
I was the same. Three seizures one after the other increasing in severity then nothing. I had to stay on the anti seizure tablets for three months and another three weeks weaning off them. But not had another one. My balance was bad though for about 9 months so I waited for my last neurologist meeting before trying. I like to think that although I still get fatigue and crash after overdoing it (which takes longer to happen and recovery quicker) I’m better mentally and physically than before because I do a lot of walking . First very slowly with sticks then further and quicker. I cope better with stress too and try and use anti stress techniques because stress knocks me down. Also balance exercises essential still. Hope all this helps.
Hi Remos, it could be a side effect - read the leaflets with the meds. Enc does affect the brain reactions/perception and things can be disorientating. I have to be careful when rising from a seated or lying position. I get a little dizzy. May have to sit or lie down for 5 mins or so. No problem with room spinning these days - but in the early stages I could expect anything. Hallucinating things floating around the room etc. Now at home with nightly walks, lone bathing, 12hrs sleep a night, weariness but getting back on rowing machine. Still no appetite or sense of taste. It's a long haul on a rocky road.
Hi Remos,
Thank you for reaching out to the Encephalitis Society, we are sorry to hear that you are experiencing these symptoms. Some people do experience dizziness or difficulties with movement, balance or coordination after encephalitis.
Please see the following link for more information regarding physical difficulties after encephalitis: encephalitis.info/Handlers/...
We are here to help if you require further support please do not hesitate to contact the Encephalitis Society's at support@encephalitis.info
Could the dizziness be a side-effect of taking my anti-seizure meds (keppra)?
I’m on 1250mg twice daily.
Has anyone else experienced similar side affects from Keppra?
Hello all- new to the forum! 
I just wondered if anyone can help
Bickerstaff brain stem Encephalitis
