Post encephalitis

feeling isolated after recovering from encephalitis & not having much support from local consultants at my hospital or doctors as no one seems to think that any of my problems are down to having had encephalitis & if I'm honest they don't seem to have a clue about ongoing & lasting effects this has changed my entire life but it's hard to explain or get any help only my own GP seems to be supportive

6 Replies

  • Hi Nick,

    I'm also an encephalitis survivor.

    Not a great deal is known as about 6,000 people a year are diagnosed with it, a hospital may only see 4 people a year, if that. I am the only person my GP practice has on it's books.

    The Encephalitis society is a good organisation to join, as is Headway, for support and information.

    This forum is invaluable, as most of us on here understand the problems we face.

    The encephalitis will have left you with an acquired brain injury, not visible to others but the result of which can certainly be suffered by you.

    I am 3 and a half years into recovery and luckily am not too badly affected although I was not expected to survive or if I did would be in a permanent vegetative state. But doctors are not always right.

    My GP is very supportive but I no longer have any rehabilitation that stopped soon after my discharge from the rehab unit.

    My sight is affected as is my balance and I have severe fatigue at times. My short term memory can be iffy sometimes but I have worked hard to improve my fine motor skills and executive functions.

    Time and patience are needed as is repetition of functions to create pathways destroyed by the encephalitis in your brain.

    You will need to be persistent to gain the help you feel you need, it is good if your GP is supportive.

    There will be many to support you on here, ask any questions you need, or just let off steam, we do understand.

    Take care


  • Hi Nick,

    It doesn't matter what type of brain injury you have unless you've had one yourself people can't understand how it effects you. I'm 3 1/2 years in aswell after suffering a catastrophic sub arachnoid haemorrhage and multiple organ failure and I was not expected to make it either. I went to my local adult learning centre and did maths and English nvq, which helped me enormously. I still suffer from fatigue but it is a very common side effect so don't beat yourself up over it. Just accept it as part of your recovery and as Janet said contact headway as without them I'd be lost.

    Good luck with your recovery.

    Lissa x

  • Hi Nick,

    Have a chat with The encephalitis Society - small but friendly bunch of people who support those affected worldwide. I was lucky enough to chat to another who had gone through a hospital visit (coma) and successfully come out the other side and was able to earn an income again. My journey was milder than a hospital visit but major enough to prevent me from rushing back to work.

    I have the brain pathways back now while I detox on Iodoral - an Iodine protocol to replenish my low levels although the standard NHS blood test came out as normal. I feel so much better on Iodine - know that I had a deficiency - and have regained all memory, proprioception, limb feeling, personality, mathematical ability and most of my language area. Look up Dr Brownstein if you think you might also have an Iodine deficiency. Like you, GP uninterested as didn't report to NHS during the event and no family or friends realised that I wasn't myself. However, I have pulled through with an empty bank account and a very grateful sense of wellbeing for the simple things in life. I walk a lot and enjoy nature and the outdoors. My energy levels have returned to normal.

    What kind of support were you looking for? If you are finding it hard to explain to others, it may be that your language centre is not fully functioning or it may be that emotionally you haven't processed what you have been through, or it may simply be you have yet to understand the full extent of what is lost, what is available to use and what is unchanged.

    As Kirk says, repetition on brain pathways to reinvigorate them is the way I returned to self. Laboriously slow, boring at times but exquisitely satisfying and patience is your new best friend.

    You will hopefully stop feeling isolated after using this forum. It is full of people with many types of brain injury who have an acute sense of appreciation for your suffering, a similar sense of aspiration for your achievements and a shared camaraderie in the humorous recovery on the journey to living a balanced life once again.

    What ongoing & lasting effects do you have which have changed your entire life?

    All the Best

  • Wow I didn't know what encephalitis was so I just googled it to learn. I didn't know there was such a illness/problem and it can be really severe. I too am learning how to accept brain fatigue and the effects it has on me and its a slow but progressive learning curve. Funny I never used the word fatigue 3 months ago but now I must have used it 30 times or more.

    Chat to people on here and give your local Headway centre a call and as others have said give the encephalitis site a try

    God Bless and hope you have a good day. Nick X

  • Hi Nick,

    I believe I am also an Enceph sufferer - I was originally told suspected Enceph but never got an official diagnosis.

    Here's what the NHS have to say about it :

    This will give you an idea of what other treatments should be available.

    I am almost 3 years on and still have some probs, none of which were taken seriously. It was very telling when I went in to GP at the 8 month mark, regarding the continuing muscle problems to be greeted with ' So, are you back at work full time now ?' ! !

    I have tinnitus ( left ear, low rumble ), memory and concentration problems, balance, fatigue, motor symptoms : spasticity, co contraction and flexor spasm. Was offered drugs but denied physio. Seems that without an official diagnosis, access to further help is forfeited. I thought it may be better for those with a proper diagnosis ? ! Sadly seems not.

    Would you like to share a little more about your illness and how symptoms are still affecting you ?

    Good to meet you, Angela x

  • I hope you don't have a form of permanent brain damage like "organic catatonic disorder". If you do your GP may well remove you from the patient register because of their personal dislike for your symptoms. How is your behaviour in emotional situations?

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