I’ve had a few quite good weeks recently having being diagnosed with HSV Encephalitis in June this year. Thought I was over the worst having experienced many unpleasant symptoms. Foolishly I decided I felt so good I’d go on 2.5 mile walk. Even worse it was a hot day and I was really stepping out.
On getting back home I soon started to feel strange and unwell. I soon recognised it as seizure activity which I’ve had in the past and am on medication for it. As a result after a little research I think I’m now having mild focal seizures. These have been happening on and off for a couple of days now which is very upsetting. I’m just hoping a few days rest will see me through.
Just wondered if anyone else had been through a similar phase after 4 months in?
Written by
Remos
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I'm no clinician, but in my experience recovery takes over a year at least. Some things like taste and memory may return faster than others. What I have found is that when I overload my brain or body I have to sit or lie down for several minutes. Symptoms can be fairly mild - nausea, dizziness and a bit of confusion. The brain can be overloaded by contemplating difficult subjects in a discussion, the body by over exertion. I may need to support myself by leaning against a wall, or safer still sit or lie down. It's worth reassessing your medication and adjusting the dosage if needed.
I've had about seven seizures, each followed by emergency hospital admission. Now my medication seems to be sorted and things have settled down but I still have to watch out not to overdo things. Mind you I am 71 now.
Hi Gandalf. Thanks for replying so quickly. I always find your responses positive and reassuring. Please look after yourself. Also at 71 you’re in your prime.
Hi Remos,I'm sorry to hear that you are going through a worrying time.
I hadthe same type of encephalitis as yourself back in the 1970's just after my first birthday party when someone there had a cold sore and I was being passed around etc so I picked something up and at the same time I was diagnosed with Status epilepticus and every time I used to pick something up as a kid it resulted in generalised seizures non-stop so I was often hospitalised. I took 3 medications till I was 10 when I had to be readmitted cos I was being sick with tonsillitis and the flu together so then I had an EEG and my meds were changed to new one's which I'm still taking but I stopped having seizures 1n 1994. Please feel free to ask me any questions anytime.
I think everyone recovering from encephalitis finds it hard to juggle fatigue. I know I push myself too much and I can feel really unwell for a few days after. I would highly recommend contacting your GP, consultant, and/or A&E department immediately as these things should always be run by a medical professional!
Here is some information on how encephalitis affects us and also some ways on how to manage it - encephalitis.info/encephali...
Thank you very much for Pete's video. As a caregiver I could identify with many things he said, especially about people not seeing the brain injury and how hard it is on the family. This disease is very hard on both of us emotionally. Many of husbands friends and family do not call him anymore. I make up they are tired of him repeating the same stories. It's very hard on me to watch people disappear out of our life. I do receive support from my family but as people are getting back to their lives after COVID, we are getting left behind since we still have to be careful about him getting sick. He has a autoimmune encephalitis. Thanks again for sharing this video.
Thank you so much for your reply! I resonate with so much of what you have said. I have autoimmune encephalitis too and recovery is really hard. The social effects are something that isn't talked about enough. Encephalitis being a hidden injury/illness can also sometimes hide the patient! I definitely lost some friends when I first got sick in 2017, but I've since realized they weren't true friends and through the encephalitis society I have made great friends and built up a great network.
I join the calls with the society and they have been amazing! Also, it is hard to let go of people who aren't supporting your life after encephalitis but one thing I've realized is by putting myself out there in different situations such as hobbies, etc I have met and become friends with people I wouldn't have crossed paths with before!
I was found by a neighbour in the driveway. No warning grand seizure taken to hospital and diagnosis of Hashimoto’s encephalopathy. Was medicated and then seizure free for 6 months allowed to drive again. Had never had anything like this before ans this one off hopefully. I am not medicated for it now
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