Apologies, that this will read a little different from so many of your posts. My journey has taken a very different path. I have been searching for a lead to help me understand what had happened to me in the years 2015-Jan 2022 for the last year. The first time I saw anything that I recognised was related to AutoImmune Encephalitis. I read Brain on Fire and had to put it down often as it touched very raw nerves and during this whole period before I had found nothing that matched my symptoms.
I live in the UK, near London. At 51 in 2015 for the first and only time in my life, i experienced a mania that was constant and lasted about 2 1/2 months. I had never experienced anything like this before or since and the doctors in the mental health unit said physical issues should be investigated; but this was not followed up
I was placed on antipsychotics, and no physical-illness checks were done at all. After the mania it was as if the bulb had burnt out and I was left in darkness. I have virtually no memory of late 2015 to early 2018 at all. I couldn't construct a sentence or hold a coherent thought for years. My family thought that I would be like that on an ongoing basis and in many written descriptions I was described as a shell. I was on ESA unable to work because I couldnt worek out how to use the microwave, the stove or even kettle for over 2 years because of cognitive reasons.
My memory was shot, everything I had learnt in my career seemed to dissapear in the wind. My memory was so bad even 4 years in, I could watch a TV show from start to finish and then watch it again not remembering anything from it.
It took 6.5 years for me to fully recover my cognitive abilities and to feel I was me again, My ability to communicate and write developed last. I know that some of my symptoms are not the same as others: I had no seizures, I never went in to a coma.
However the similarites and statements I recognise truly touch a nerve. I have not seen this anywhere else. Although I am currently recovered, I do not know whether I could relapse as I don't know what it is at the moment. I just want to gain an understanding of what happened to me.
I wrote my first book for friends and family at the time, which is everything I knew, which I later adapted for general publication. It's a short book (140-150 pages) but if anyone is interested at all, the book is called Closed for Repairs and the dropbox link to download it is
If you want to check the book first, its on amazon site (just search for closed for repairs in books) .
I have included the cover below so you can recognise the book on amazon.
I apologise I am not yet diagnosed. However it was 6.5 years of my life and I have no explanations. This however feels like my first insights into what happened to me and a place to gain information and understanding before I reopen with the doctors.
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baskingoutinthesun
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if you book is as informative as your post it must be a great read. Wishing you every success with your prolonged recovery and goes without saying your book.
I am just so pleased to finally be in a place where I recognise so much of what people say. When I wrote the first book about this, all I knew is what had happened but not what caused it. I was looking blind for a long while and in all the wrong places. Finding Encephalitis through first books and then just now starting to with people, is actually one of the best things that has happened to me in the last several years (the other was to be able to talk to my family and friends again and fully express myself).
In case anyone is interested, the below is a dropbox link to my book. If I can find a way to post it directly on here I will do. It is called Closed for Repairs. I attach the picture from the front (as it doesnt have it in the proof).
I dont expect anyone to read, but if anyone is at all interested I would be so thankful amongst such a group for any feedback, questions etc. as I so much want to further my understanding and knowledge. I was in a support group meeting late Saturday and realised 3 symptoms others reported which I had not even considered or wrote about at the time as I had no idea that they could be linked. I feel very grateful to have found this community, which was recommended to me.
My book approaches the subject a little differently. Any comments, questions, insights etc would be gratefully received. You can find the book on Amazon if you want to check it first before downloading.
what an amazing cover sums our illness up perfectly one cog goes wrong the rest goes to pot and downs tools , a little like a strike action ‘right lads we’re out’ ! It takes time to get it working again but the brain is amazing .
I dwelled on the cover and name, it is so easy to end up with a paragraph of description, where a picture says a lot and it allowed me to have a short title that wouldnt need a detailed explanation.
I agree on the brain totally. I relied on it all my life, my whole career was related to it but I never had the sheer appreciation for it I do now. I spent years as a camera with no sd card, really not comprehending what I could see, which makes me appreciate every day in a way I never did before.
I dont know if its common but I found I changed in a lot of small ways as well. After a lifetime of drinking coffee by the bucketload, I am now a mad fan of tea since recovery and cant touch coffee for example.
Hi LiLuMi. It is only since I started on these forums (this and aealliance) and I went to my first support meeting, that I realised there were others who didnt have those symptoms. Even on the Brain on Fire book, which is where I first came encepalitis I saw many differences but was shocked by the similarities, which i have to say really jarred me.
I had spent so long looking at things that didnt fit and knowing that the mental health diagnosis was a square peg on a round hole but had no idea how to progress so just kept looking. I am so thankful this community exists.
I have decided before I go back to the medical establishment, I want to understand as much as i possibly can as in my limited attempts to find out, my referrals to neurologists were just batted away.
Thank you for the welcome. It is very much appreciated,
This may sound an odd question but do you suffer with cold sores? I wasn’t fully diagnosed with HSV encephalitis so they wrote it down as meningioencephalitis. But the doctors I saw were fairly sure my own case was due to having a cold sore infection which spread to the brain.
Like you say. Every case is different yet there are all common threads and issues we deal with which only those who have had something like it can truly relate to. Taste change is one of them. My taste buds and sense of smell actually became enhanced weirdly and as you say, some things I loved I can’t stand.
Good luck on your journey. Yours has been a long one but keep improving and be kind to yourself.
I have had cold sores but do not remember having them around that time. I was severely ill before the mania exploded.
I had been at work, writing a report for a key meeting when my eyesight just lost focus entirely, literally happened suddenly mid sentence. I felt a dizziness like you would after being twirled on the spot for 15 minutes with a sudden stop (thankfully was sitting) and i couldnt think clearly.
I have no idea why but I stayed there for 3-4 hours (well this meeting was really important) not being able to see, or do anything waiting for it to pass.
Apparently I somehow made it to the meeting (dont remember getting there) but the meeting was stopped as they realised they couldnt communicate with me. I was taken back to where I was staying by one of the directors.
That night i had terrible pains rip across my stomach and diarhea, every hour or so, always preceeded by the ripping pain. This continued for the next 2 weeks (luckily managed to make it home). After about a week I started also passing blood, up to 1/2 pint each time. I was seen at A&E and Emergency doctors both of whom said it was as a result of burst blood vessels. The worst though was the pain, no matter how tired I was the pain occured literally every hour and would wake me even if i could sleep and after the blood loss stopped. I estimate that that I had maybe 2 hours sleep a night for about 2 weeks.
The maniaand then psychosis started on the back of that illness (I lost about 15kg in 2 weeks). However this whole illness was ignored completely and never investigated.
I totally agree that everybody’s journeys are different and similar is some way . I also found that after reading so many other peoples stories here I would question why my mom still hasn’t reached a certain point with her recovery and questioning everything .
I am sorry to hear that professionals did not test you for encephalitis or other neurological conditions at a time which must have felt like hell for you and very scary.
My mom was diagnosed last April with autoimmune encephalitis. What we found when we first took her to the hospital was that so many of the so called health professionals just overlooked the possibility that it could be neurological and automatically put it down to a mental health condition . My mom went from being a normal 57 year old with no history of mental illness to suffering with psychosis / delusions / severe aggression and involuntary body movements / seizures and completely a different person all together . The doctors and nurses at the first hospital she went to treated her like a mental patient and also gave us grief for not being able to tell them what was wrong with her ! We were in complete shock and just wanted answers but it was the most horrific experience of my life and it will scar me for life . Anyway the mental health team were getting involved but they told us that because my mom had never suffered from mental illness before that they wanted to rule out any physical illness before they would step in … I will always remember this one doctor saying to me at the time that they were going to do a lumbar puncture but that it would be a waste of time because it would come up negative anyway and he seemed so angry that the mental health team wouldn’t just take her and get her off his hands ! Fast forward 1 week and the results came in - positive for encephalitis.. I seriously wanted to punch this doctor in the face ! He was so rude to me , my mom and the whole family all because his lack of knowledge on neurological conditions and judging my mom because she was so poorly and he thought it was not his department .
Anyway I am sorry for waffling on here but I just get so angry when I think how different things could have been if my mom had got the earlier diagnosis . I can’t spend all my time dwelling on this though . She is now 3 months into a neuro physiatrist hospital rehabilitation and the staff where she is are fantastic . I really hope that soon she will be able to come home back to us .
I am learning so much about encephalitis and the key thing is to have so much patience ( something I really don’t have in general but am working on ) everybody’s road to recovery is different but you need to have hope and love 💕
Thank you so much for your response. Your mum was lucky to have you there when it happened. I was alone when I will ill and then went into mania although a work friend drove down when they did their mental health act assessment. When I saw the mental health teams I was already experiencing mania. I constantly told them (in fact whilst in hospital as well) that my severe illness caused my mania. I will post after this a reply with a summary about what happened in my leadup to mania then pyschosis.
However everyone I met in hospital when I was having psychosis was deeply scarred by it, even some friends now seven years later told me it shook them. What I can say is when I experienced psychosis everything you have in your toolbox to manage your life dissapeared for me. I was just swept away with it unquestioning. Which is the opposite of my personality. I fear it was much worse for those that visited me than on me myself as, well it wasnt me, I was just a guest watching the show. I was reading today (just started) a book on the brain, written by a stroke survivor who was also a neuro specialist, so she understood what was happening to her. What I didnt know (and I am amazed I didnt) is that the right hand side of the brain deals with everything that is happening now and your interactions with the world and the left hand side of the brain what it all means, so the logic, the short and long term memory etc. Her descriptions of suddenly being in touch with the universe, when the left hand side of her brain shut down are similar to mine, I honestly felt at one with the universe and enamoured at what was happening, though I have very few memories.
However many people described the experience of seeing me as very scary and my sister had to stop visiting as she couldnt cope with the experience (i can completely understand). Yes for me they just said at a mental health consultant meeting physical causes should be investigated but none ever were. In fact I was pushed across to mental health when I attended A&E because I had lost feeling on the left side of my face and in my left hand completely, which was ironic.
I continually asked for them to investigate the physical causes but they just focused on the pyschosis. My wife was in Japan with my daughter and her dying mother. Her father was also dying (though delayed a few months) and he didnt know his wife was dying. It was all very messy and for obvious reasons my wife listened to the doctors at that point (so much to bear in such a short period).
I can completely understand your feelings and totally on the diagnosis front. What I can say is for me it was the recovery from cognitive loss that really took a toll. I couldnt answer with a sentence or construct an original thought for years. I was oblivious to every thing that happened around me, though and I dont understand how I knew I existed.
I dont know at what point this happened but I found I could think when I dreamt. I dont know if I could really think or it was the illusion of it but it gave me the greatest comfort and in the early part of my recovery (first few years) would spend as much time dreaming as I was allowed (very different to me generally)
As I wrote in my book. The one thing I clung to during my whole time when I was locked in (and I couldnt fully express myself for most of the time), was that I was there, I wanted to be back more than anything in the world.
I honestly believe that my recovery was one of the greatest experiences of my life. To spend one day back in this world as me would have been enough. I have been lucky enough to have that many times over. The brain is a wonderful thing and capable of marvels.
Being there, waiting for her and wishing her well would be all her dreams combined at the moment in my opinion and experience. My daughter who was 9 when i fell ill is gradually getting to know the actual me and that is a treasure, I am always free to talk ( I spend a great deal of time at home, writing books, writing for a startup I am forming). Anytime you want to feel free to send a message. I want to learn as much as I possibly can and have immediately found solace and friendliness in this group.
I will not approach the doctors again until I do. By the way if its of any interest I wrote a book to friends and family (initially) explaining what happened to me from my perspective , which I adapted for other after. Its attached to my first post. If its of interest I am happy to answer any questions, though just being here I found key symptoms I didnt even mention in teh book as I had no idea they were related to what happened to me.
Finally do not apologise for talking through the issues that annoy you. They are very interesting to me and I learnt that writing about what happened allows me to exorcise it in a cathartic way. We need people to understand. I thank you greatly for your time. I love this place because people are so true in here.
Actually I didnt realsie how much I had written. I wrote about it another post. So wont overload you with information. Its so nice to find this place, I have to try to hold myself back as I havent had these conversations like this in 7.5 years.
thank you baskingoutinthesun for your reply too . I will read your book definitely . Everyone on here have been so supportive and given me so much hope when I found myself at a complete loose end . My mom has always been my rock . She is everything in this world to me and this is why I want to learn as much as I can and help her out the best way I can through her recovery .
It is absolutely terrible that the health care professionals did not investigate your illness further . You should be so proud of her far you have come though . Any advice you can give me would be greatly appreciated . Your determination and courage is heartwarming .
I can’t bear to think of what could have happened to my mom if I didn’t spend 12 hours a day in that hospital with her advocating for her and trying to get answers . It did make me physically Ill too though . I lost so much weight and was starting to lose the plot myself . My mom got transferred to a different hospital after her diagnosis and she was put in the neurology ward . Finally people understood what was happening to her and could help her . She was basically bed bound for weeks , unable to talk , eat , drink , walk .. everything was so scary to watch . It was like watching something on a horror film and not being able to stop it . She was on a cocktail of drugs and they even had to put boxing gloves on her to stop her scratching herself and trying to rip the tubes out .
Slowly she begin to swallow again and then communicate with us but that took a very long time and she was always so agitated ( which I can only imagine we all would be in the same situation ) she began walking and so every day I would take her out for walks and to the cafe . I found that once she was off the ward and out about she would be like her old self again ! Once we got closer to the hospital she would get really agitated again and leaving her there was always horrible 😞
To cut a long story short , my mom was discharged from hospital 4 months later with no support from anyone except us ( her family ) but she was not coping at home and my dad just did not know what he could possibly do . She was constantly screaming and would not relax . We had to make the very difficult decision to take her back to hospital and that’s when they found her a bed at a neuro psychiatric rehabhospital 120 miles away from home .. she has been there 3 months now but I can see improvements every time I visit her . Her memory has returned and she is able to hold down a conversation . She struggles to do things for herself still but I am just hoping she can live a good life again.
One thing for sure is that I will be there for her every step of the way and although life might be a bit different it doesn’t mean it wont still be beautiful .
I am doing a run in April for the encephalitis society because they have been there for me when I had no one else to turn to or who could understand . This group chat forum has helped me out greatly too .
Keep fighting and learning as much as you can . Spreading awareness to the world is so important and could save more lives and stop others getting misdiagnosed .
You may find my book style a bit weird. My friends and family said it was a fireside chat, which I like. Its very much as I have always written (although I could not write clearly for 5.5 years). I deliberately wrote it in the very final stages of my recovery, the earliest I physically could as I needed to get it onto paper. Anyway, anything at all that you read will be greatly appreciated.
Feel free to ask me anything and everything on it. It was my first book, which I loved writing (nearly finished my third). What amazes me is how thoughtful, honest, open and supportive people are on here. I personally feel I have come through this enhanced by these experiences. Although i hope I never revisit them. Its a strange thing, the combination of circumstances meant that the way things came together for me were not ideal, though I am thankful each day, now.
Feel free to ask me about absolutely anything you want advice on. If I can give my experience I will gladly give it. It would be nice to think those lost years may be of value to someone, I am not suprised how it made you feel. My wife developed PTSD like responses and couldnt even talk about what happened (though she did have counselling). She couldnt read or hear anything from the book without breaking down.
I have heard that many people were extremely agitated, which of course makes complete sense, its like a stroke or other situation where what is inside cannot be communicated to the outside. I didnt have that but that was probably due to the sheer timelines involved. It was mainly just me and my brain for many years and a number before me and my brain could work together.
I didnt experience the inability to control my emotions except during my mania phase and I was completely unaware of how I seemed to the outside world during that period. During that time I would honestly say I didnt know how I seemed to others. I only found out this last week, from my medical notes of the time (I could never bear to read them), that I was talking to myself for weeks, all the time, day and night. I didnt know that. Honestly. That staggers me a little
You mom will not mind you putting somewhere where she could get the assistance she needed. When I was unwell, the last place I wanted to be was at home. I knew enough to know I had to be somewhere, anywhere else. Also when I lost myself in mania and psychosis the one thing I realised was I needed to be someone safe for me and for others. It was about the only sensible thing I realised. Your mom will thank you for it when she recovers.
The fact that your mom has recovered her memory is a good sign. For me it was a path of being able to hold a thought, being able to think a new thought, being able to reason (at all), being able to express myself and then being able to say what I felt.
I have no idea if that is common but what I would say is that my family felt because I seemed physically OK that my mental recovery seemed unduly slow and tried to help me by pushing me. That didnt help me.
What i found helped me was doing something I used to know how to do, keep doing it and keep gradually changing it and enhancing it. I did this for a very long time but could lose myself in this for months (and I did). Gradually I found I learnt and at the same time got back some of my cognitive ability.
Even if I had never recovered I had beauty in my locked in world. I saw my daughter grow and I could hear my wife and daughter laugh. If that had been the rest of my life, I would still have wanted that. Her recovery in so many ways is better and faster than mine ever was so I have all the hopes for you.
What you should never doubt is that inside, she still loves you all. If I had one overriding feeling when I was locked in it was that. What I will also say is that the brain in all this is also fighting for her. You have a wonderful outlook on this.
Hi I am not sure if anyone would be interested in this at all.
I have just created my first Audio book based on my first book about my illness and recovery (when I didnt have any idea what was wrong with me). If anyone is interested. Let me know. I can post here.
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