Introduction & after some advice - Encephalitis Inte...

Encephalitis International

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Introduction & after some advice

RainbowBrie profile image
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Hello! I hadn't realised that the encephalitis society had their own section here. Been a member of health unlocked for a while now but thought I would do a proper intro here.

I'm Brie. I had HSV Encephalitis in December 2019. I lost 4 days and still can't really remember them. 2 weeks in hospital and then months and months of recovery. It's been tough. Covid hasn't made it any easier. Finally I returned to my job in January 2021 and felt like life is finally getting better.

Long term I've been left with a bit of memory loss. Unable to concentrate on more than one thing. Fatigue. Headaches.

My question - I have been experiencing pain down my neck and across my head. Right side. Head feels full and ears popping. Slight dizziness and fell over a few times. This is how my symptoms started when I got encephalitis so naturally I panicked. I've been reviewed by a GP who thinks I've probably just pulled a muscle. No temperature so they aren't worried. It's been a week now though. Should I be asking for another gp review? Or just accepting that maybe I have pulled a muscle or maybe it's something from the encephalitis?

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RainbowBrie profile image
RainbowBrie
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Ocean96 profile image
Ocean96

Hi Brie!

Thanks for joining The Encephalitis Society Group - Delighted to have you!

It really sounds like you've been through such a hard time and covid definitely hasn't made things easier.

Fantastic news on returning to your job! How are you finding it?

That must have been very scary and it's good you've linked in with your GP.

Are you in contact with a consultant neurologist? If so, I think arranging an appointment or phone call would be very beneficial.

I myself have had encephalitis and sometimes get pains and worry if it's something to be worried about. I try to always link in with my neurologist if ever worried!

Here are some of the effects of encephalitis that you have mentioned - encephalitis.info/physical-...

Here are some guidelines on how to manage the side effects of encephalitis - encephalitis.info/guideline...

All the best and thanks for reaching out!

Gandalf2 profile image
Gandalf2

Hi Brie, I'm just going through old posts on here and spotted yours. I have two types of Enc Autoimmune and Hashimoto's Enc. I have problems with stuck muscles in my back between my spine and RH shoulder blade.The docs prescribe meds for the pain but it was only when my physio turned up (via the NHS) and gave me a couple of deep massages that they were resolved. He gave me advice on how to unlock the muscles and showed my wife the technique - it may not work for you but worth a try if you have access to a good physiotherapist, masseur/se or osteopath.

Your dizziness could be due to an infection, or a side effect of meds or the muscle stasis it's not easy to diagnose. Have to go on a process of elimination.

I also have the common symptoms of enc. - memory loss, fatigue, loss of taste, anxiety, extreme reactions to stressful situations etc. It's a real handful. Worth looking these up if you haven't already.

Luckily I'm retired - I don't think I could cope with work and enc. you are doing very well!

Bravo from G2

Baby donkey smelling a flower.
RainbowBrie profile image
RainbowBrie in reply toGandalf2

Thanks for the reply. I did end up going and seeing an Osteo who managed to work some magic. She diagnosed occipital neuritis, likely caused by Encephalitis.

Gandalf2 profile image
Gandalf2 in reply toRainbowBrie

Wow! I hope you continue to make progress - I'm in my second year of recovery.

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