I have just finished my 2 weeks treatment of Acyclovir for Viral Encephalitis caused by the Herpes Zoster virus. Had CT, LP and MRI. Brain MRI was grossly abnormal and showed lesions.
I lost 3 days when I was taken into A&E - Cannot remember any of it. It feels like it happened to someone else, not me.
I have struggled with anxiety in the past but it seems to have ramped up ten fold since this. I tire very easily and need a nap after lunch to make it through the day. If I go out I become easily overstimulated by noise and lights and then need to sit in a dark room for a while to recover. I get a fuzzy feeling in my head and it feels prickly across my forehead.
I have raging tinnitus - which I have now had for over a month as it was one of my first symptoms (misdiagnosed with an ear infection). I am also incredibly sensitive to noise and some noise makes me feel nauseous.
I am overly emotional and swing between feeling ok and then feeling really low. Easily agitated and exhausted by not being able to do things I used to.
I was very active before this. Competing in triathlons, dancing, walking with my dog. Working and being a Mum. I am feeling frustrated I cannot do any of these things. Even being a parent I am struggling with.
I wish someone could just say to me that it will take X amount of time to be back to normal. Not knowing what is in the future I am finding really hard. I dont know what I will be able to do. I want to be back to my old self.
Just looking for others who have had similar who are further down the road and can shed some light. Give me some hope of some kind that this isnt it for me.
I have a repeat MRI in 3 weeks to see if theres any further damage or (fingers crossed) if there are any signs of recovery.
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RainbowBrie
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A couple of points Rainbow. Firstly, antiviral and anti-inflammatory meds can ease the symptoms of brain infection but there's no treatment for the actual injury to the brain, apart from a period of rest, quiet, healthy diet, avoidance of alcohol and loads of fluids, preferably water.
Secondly no one, not even the specialists, can predict the eventual outcome of any brain injury, but at such an early stage of recovery any progress will be negligible. It could be months before you start to see signs of improvement, and this is often the result of acceptance of and adaptation to your newfound issues.
I gradually learned, after a brain haemorrhage in Dec 2011 and the loss of the best aspects of my life, to concentrate on what I could achieve rather than what I couldn't.....
I wholeheartedly empathise with the Tinnitus ; I've been cursed with the sound of jet engines for over 30 years now since I was hit with Viral Meningitis. I hope yours is only temporary.
Your sensitivity to over-stimulus and bright lights is all part of your brain's need for respite, so be patient with yourself ; put missing your 'old self' aside and allow plenty of time for recuperation. Life afterbrain injury is different ; not necessarily worse but different.
Good luck going ahead m'dear and all best wishes for surviving Christmas and for better days in 2020. Cat x
Hi Rainbow Brie’s, I am 8 years down the road from what was initially diagnosed as Viral Encephalitis but was actually PRES, but encephalitis is encephalitis whatever name you give. Sorry I can’t stay longer atm it’s Xmas morning and great grandchildren are here but I will come back and share.
Cat has said a lot I was going to say and all of it spot on.
My experience of Encephalitis put me in a coma for 3 weeks, my family were told that if I survived I would likely be in a permanent vegetative state, but luckily that did not happen.
I was in hospital 5/6 weeks and then rehab a further 5/6 weeks, where they taught me to walk again and also care for myself again. I was taught to make a hot drink and make a very basic meal.
As I said before that was 8years ago and I can still only do basic household chores.
I have been left with chronic fatigue, balance problems and loss of peripheral vision on the right hand side.
But, I can go out alone, walk without aids , use public transport etc. My quality of life is good. Not what it was before but along the way I have found acupuncture, reflexology and vision therapy have helped immensely.
My intention is to tell you you must push yourself when you are able and rest when your body tells you to.
I have been unable to work again but that does not mean you won’t be able to.
Everyone’s experience of BI is different, there are degrees of BI, and it depends just where in the brain the damage is. It also depends on your age and just how much you used your brain before. I was 59, I am now 67, so I only have limited time to improve.
Just remember your brain is very plastic and can learn and relearn all your life but you have to use it and practice, practice, practice. Think of how you learned as a child repetition until you achieved something.
You may find you have to do that again now on occasion.
Contact the Encephalitis Society for support as well as Headway, there are people with both charities who you can speak with should you need that support.
And, we are always here to support when we can.
You also asked how long was recovery, no one can ever give a definitive length of time for the reasons I mentioned before and like wise just how complete that recovery will be.
Take care, and I do hope you are enjoying Xmas festivities.
I am 34 and was just at the start of my master's degree after years of lost confidence! Just feels like its come at such a rubbish time.
I am glad you have said to push myself. Friends and family are quick to keep telling me ' slow and steady' and rest! But I have always thrived on challenges. I compete in triathlons and always want to be better. So I like the idea of being able to push myself. Very quickly learning how to pick up on my bodies cues that its bad enough. Already 2 naps down today.
Hoping also once Xmas is over and my appetite is back I can get back to healthy eating and fuelling my body.
The encephalitis society have been super helpful, especially with helping family understand including my little boy.
Do be careful with the pushing yourself, you will get to recognise when to stop. In the early days I would push TIL I crashed and burned. Now I know just how to get the best out of the day.
Having said that I have also learned how to adapt myself to fit in with others.
It’s learning the “new you”.
I’m expecting to crash and burn after this Xmas time but that’s ok, it’s turning out to be one of the best.
It’s over 15 years since my Encephalitis diagnosis, I can’t remember much about it. I’m told that I was sitting next to my partner on the tube and suddenly stopped talking before slowing sliding from my seat onto the floor.
I’m not back to the old me and don’t expect to be, learnt to adapt and work with my limitations to a certain extent. I still live in London and have found CBT therapy helpful in coming to terms with life post brain injury. My iPad has been an invaluable tool in helping me remember things, research travel options for bus and tube etc., so I’m managing to get out and about on my own. I’m an artist and have taken part in art fairs, travelled north and south visiting parents and in-laws, have an active social life and even coped with my partners cancer treatment and death.
Do take your time, there’s no rush. Do challenge yourself but not too hard, you’ll learn to recognise times when you’ve really reached your limits and take time out to recharge.
Hey, I'm 29 and now 4 1/2 years on from encephalitis. I don't remember my time in hospital but I am quite thankful I don't as I've been told when I first awoke I had no idea the people around me were my parents. I thankfully have old memory back, not alot new so I now keep a daily diary. I HATED this to start with but now I would be lost without it now. I keep a page a day. I got a blank lined one and have come out with a great layout that is good for me. I've a part in the top left of the page that says Breakfast, Lunch, Dinner with a box next to each - I tick off when I've eaten because I soon forget and I did the same when on meds. Top right of the page I have a box for appointments. I then have a column for things to do -I need this because I don't always remember what I'm meant to be doing and I tick it off when it's done. Then there's a lovely column on the right which I keep updated throughout the day with what I am doing (if I leave it all to the end of the day I'll have forgotten. I also try and keep my diary layout done at least to weeks ahead). I don't write down emotions unless they're great ones because then I can forget the bad ones. I am unable to work now but I have a weekly routine to keep me busy e.g. gym Monday morning, I do a session at the gym called young at heart - which I relate to alot, (I sometimes feel I'm more like 9yrs old than 29yrs). Tuesday I see my Nan and Granddad (I used to feel really bad because I'd go round have lunch and then fall asleep. My Nan however struggles to stay awake - she has the excuse she's 92, so we now use it as part of the competition when we watch Countdown which is on channel 4 at 2.10pm. Our competition is now longest word, longest one awake). I have gym again Wednesday, help out in a charity shop Thursday. I was so worried when I first started about my bad memory that co-workers let me take a photo of each of them which I have on a spare page in my diary with names underneath and I check every time before I go. Lastly I spend my Fridays at Headway which supports life after a brain injury. I was VERY nervous to start with because of my bad memory but I really enjoy it now and recommend checking it out headway.org.uk . AND i've just remembered a year ago they put my story up on there headway.org.uk/about-brain-... Sorry for such a long message, I hope it can be of some help. Clair
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