I'm from Australia and very thankful to find this community and to have read all your stories/posts - thank you for sharing. It's nice to know I'm not alone with this condition and I hope everyone is staying positive and strong through your recoveries 💪🏽
I was diagnosed with Anti NMDA Receptor Encephalitis a month ago. Before diagnosis I was experiencing speech and vision problems, vomitting and unusually high feelings of anxiety. One week later, I had 3 seizures which lead to my hospitalization for the next 2 weeks while the doctors figured out what was going on. After a lumbar puncture, that's when the diagnosis was finally made and I was given anti epileptic medication, steroids, plasma infusion and Rituximab.
The doctors said that I had a mild case as I wasn't presenting all the symptoms of Encephalitis, for example, I didn't have memory loss, hallucinations or confusion. They seemed very baffled at my presentation but none the less it was Encephalitis. After the initial treatments, I'm starting to feel better but still recovering and still very fatigued.
I suppose it doesn't matter what degree, it's still a traumatizing experience for anyone who has been through it. It's definitely been traumatic for me. I was wondering if anyone here though still:
A) Fears still getting seizures? I'm 26 days since my last one ( fresh, I know) , but now i'm ALWAYS living in fear that I'm going to have another one - despite being on medication for it. Any encouragement?
B) Has anyone resumed playing sports post recovery? How did you ease yourself back into training and sport? How did you cope or how are you coping? I play field hockey and am SO keen to get back into it but I'm also scared it won't be the same or I wont be able to play again...
Sorry for the lengthy post, but I'm so interested to hear eveyones experiences since I'm so new to this.
Thank you 😊
Elle
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Elle2090
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I myself was diagnosed with Anti-NMDA Receptor Encephalitis three years ago. I had similar symptoms to you but I didn't have any seizures so unfortunately, I cannot give personal advice regarding your seizures but what I will say is well done for reaching 26 days seizure free! What a massive milestone and you should be proud of yourself!
Even though, I can't relate specifically about seizures. I can relate to fear of certain symptoms reappearing and things that have helped me are:
1 - Trying my best to live in the present. I'm okay today and that's all that matters.
2 - Linking in with medical professionals if I have any questions or concerns and look for medical reassurance.
3 - The Encephalitis Society has a document discussing Encephalitis and seizures which may be of some use to you.
4 - Brain on Fire movie/book: Susannah Cahalan wrote a book describing her experience with Anti-NMDA Receptor Encephalitis which was adapted into a movie which is on Netflix. NOTE: ***I would only recommend reading or watching this if you feel comfortable doing so as it may be upsetting***
Thank you Ocean96! Thank you for your great points, resources and encouragement. I have heard about Brain on Fire and am heeding your warning about being ready for it, which I feel I will need a bit more time before I watch it, but am keen to. Thank you 😊
I had HSV Encephalitis as a 1 year old, so I don't know about hallucinations or confusion. I did have repeated seizures before during and after diagnosis but I was vomitting before I went into hospital and was put on a drip in an isolation ward apparently. I never suffered from fatigue though. I was treated with epilepsy medication like you are taking but when I was 10 they changed my medications to better ones and from there I 'gradually'improved.
What medication are you taking as this 'could be' an indication of why you are living in FEAR about having more seizures. It was every time I had a virus bug infection that triggered my grand mals off so I had possibly almost a free month to start with, and as my body got used to picking things up, it went to every two months etc which meant the less often I was hospitalized. My Mum was always living in fear of me having another one etc. I WAS on Tegretol, Diazepam and (Mysoline which was the worst one), because I had this fear that I was going to fall or a feeling that another seizure was coming but apparently there wasn't, (up to the age of 10).
Those were the earlier days but since I was changed to my current medications I then had a free year, then 2 years free, then 4 years and then by the time I was 18 I was free but my Mum did live in fear for a few years after but no more came so I totally empathize and sometimes it would enter my head now and then but I would distract myself by doing say sunbathe in the garden, listened to my favourite records/Cassettes etc my favourite was Bucks Fizz the first one my Mum bought me when I was 5 ( I have a music collection ) while I used to help my Mum with the housework and the gardening. I used to love playing Tennis but I can't relate to training or easing myself back into work etc because you atre talking about a child growing up with Encephalitis so there is no comparison.
No way would I let it get to me, I did used ti live in the present and look forward to a better future and focus on the nice things I could do inbetween then . Then if I did have to be hospitalized... Well I would "think about that when the time came and not before". Even then I thought in the sane way (after I came round again) several days or whatever but once I was conscious again I still had the same outlook.
Any hobbies you might have to distract yourself for a while.
I was also diagnosed with OCD at age 18 which knocked us for six!! You are doing good 26 days free.
I now have had that number of years free from them so never give up fighting!
Please do not hesitate to ask me any questions at all.
I think everyone will deal with this in their own way. I had my diagnosis some 2 years ago now, 4 seizures, unable to wake from the coma, 3 months in rehab. And found motivation to get better pretty easy and straightforward. I have a young family and I was determined to get back to them, probably to my own detriment now that I look back. I was too keen to say I was fine, and as such didn't speak to any therapists about my fears and anxieties. And as such have so many fears about recurring seizures, or it all happening again, since returning home. I think back and feel I should have been more honest about that at the time. And have found seeing my neurologist, now on an 8 monthly basis, almost a pointless task, where my worries are brushed under the carpet, as understandable, rather than them offering support mechanisms. Honestly, I get more support from reading these posts, than I have from anywhere else.
Regarding getting back to sport, this was one of my saving graces, once I was back home, I started jogging as soon as i could even for short distances, and started back playing football (soccer) almost a year to the day of getting out of hospital. It is vital to find something to keep your health up, but just as vital to be in a social group, so don't shy away from it, take the advice from your specialists and don't push yourself too far too early. Wishing you the Best of luck for the future. Stay strong!
Hi Foofifer, thank you so much for sharing your story 😊 I'm real sorry to hear about the coma and rehab part but it sounds like you're doing great! Are you on any anti - seizure/epileptic medication still?
I agree, being part of this forum has been very informative and uplifting.
It is also VERY positive and encouraging to hear about you getting back into football. Im very happy you were able to get back into it. It gives me hope too 🙂Thank you!
Thank you! Nope all medication finished about 6 months after getting out of hospital. I was 35 when I got ill, and I was pretty fit prior to that, I had lost so much weight, that getting out and doing any form of exercise helped try and get my body to look a bit more like it used to! And that helped with the confidence of not just returning to sport, but not getting hurt taking part. I'm sure I speak for most sufferers of this awful illness, that we all have our tough days, but doing things you enjoy, being with people and talking about it, sure as hell helps! Wishing you the best in your recovery, hopefully it won't be too long!!
Don't know if you still use this site as the post I am reading from you looks like it is 3 years old? Thanks for sharing. I was sifting through the site and your post about sports caught my attention. Your story is very inspirational - being that sick and getting back to playing soccer! My husband (and I) was an avid bicyclist before he got Enc. H1 this past May 2023. He was in hospital for 13 days and rehab for 2 months and returned home July 30 2023. His balance now is such that he usually uses a cane - for longer distances, or when feeling weak, a walker. So with the balance issue, a regular speed bicycle is not possible, at least not yet (hoping and praying it will be possible in time). Do you have any other insights into how you were able to get back into your sport? We're thinking of trying out an Adult e-Trike.
Thank you Paula-38 for sharing your journey with me and I'm sorry to hear about what you went through but it sounds like you came out the other side so much stronger.
For seizures I'm taking Levetiracetam and Lamotrigine. I'm being weened off the Levetiracetam over the next three months though. It's so good to hear you became free of seizures but it's comforting to know the same fears were shared there. That is very comforting , thank you 🙂
By the sounds of it I think you still need the Levetiracetam -it's supposed to be as good as one of mine 'Phenytoin' for seizures/epilepsy prevention. If I were in your situation I would ask them to keep me on it. Its one of the best meds out.
Are they giving you another one while they ween you off it? Because apparently that is the correct way to do it.
I was hospitalized for six weeks while they changed mine .
I wish they would keep me on the Levetiracetam but they are keeping me on the Lamotrigine and plan on weening me of the Levetiracetam slowly. Maybe I will ask to keep on the Levetiracetam but I think they said there were consequences of taking that long term.
Did you suffer any seizures when they were changing the medication over?
Well as it was I picked up the flu and tontilitis together which triggered my seizures off, I was vomitting and couldn't keep anything down so I was having repeated grand mals and was rushed into hospital and they continued right through the night which apparently was the worst night for my parents because the doctors abruptly stopped the Diazepam because it was addictive, which resulted in the above situation 'through the night'. I believe that all the nurses and doctors were all round my bed and couldn't do anything, so the docs called the paedatrician out at midnight in an emergency, he came out from home and looked like hehad been painting my Dad said. The paedatrician attatched my head to a computer with some wires ( I caught a glimpse of this inbetween my seizures) then after a considerable length of time the paedatrician did give me new meds through the drip then they stopped and I believe I slept it off and was tired . My parents stayed the night that night they were given a bed because no way could they go home seeing their Daughter in that state and were panic stricken so they needed their sleep too because they were absolutely shattered but also relieved that my seizures had stopped (the hospital lost my records of that night)
My Dad thinks it maybe because earlier in the day my parents had gone home for a break but when they came back later the doctor there knew them but didn't even look at them or say hello to them or nothing, so my Dad said he knew something wasn't right and when they saw me he was right and I just explained what that resulted in.
We were all exhausted even the next day but I think I took my time to come round though and then I didn't have any more what a huge relief that was. I find talking about it a bit depressing these days well because its not relevant to the present day but there again I will do anything to help other people in that situation as I already have been trying to do so on Twitter.
Dear Elle. I don’t really have an answer to your question but your question of fear for another seizure reminded
me of something. Have a look at Apple Research Kit. Apple has constructed a platform that is researching epilepsy to predict the next seizure. They need people to participate in the research so one day a digital tool on your phone/watch can help you predict the next seizure. Have a look at this: apple.com/uk/researchkit/
There is a reference half way down to an app on Apple Watch called EpiWatch. Let’s all participate in the research and find the good predictor.
Hope that you’re doing better now. I was diagnosed with autoimmune encephalitis in December 2019 and have no memories until September 2020.. I left hospital at the end of November 2020 and my last seizure was in September 2020, but I am on a lot of medication to stop these! I suffer a lot from fatigue am a way off from getting back to work, but am working on my cognitive and executive functional skills to get there.. so get very frustrated with myself and others but am working on strategies to prevent this!
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