Are we moving forward? Psychotic episodes

[RainthenSun11]

Hey all, our daughter has been home after brain injury rehab since 4th December..auto immune encephalitis since July 2024 with frontal lobe scarring. We have very good days and very difficult days. When things get emotional or too much for her she turns very bad. Scary stuff sometimes and very dark..it's quite confronting. If we react angrily of course it gets even worse. We try to keep a cool head, sometimes with pressures of everything it's hard not to just snap. We try all the psychology strategies but sometimes it's all futile. Will this stage pass? I wish I knew! Anyone have any strategies that work? Should we do a brain scan?

[Makbil86]

İt is very new. Everybody has very different effects after encephalithis. What about your daughter? How old is she? Which problems does she have?

[RainthenSun11 in reply to Makbil86]

Hi, our daughter is 22. She went from a high functioning university student to not being able to wash her hair. Fortunately, her speech ability to walk etc was unaffected and to date she's had no seizures. All purely psychiatric with strange unpredictable behaviour.

[Makbil86 in reply to RainthenSun11]

Ok.I see. Has she got a memory problem? For example I have a lot of memory loss. I was a teacher , made many projects , was able to do all works at home but after encephalithis I don't know how to do something.I can't cook or clean etc. If I do a thing everyday I can learn but in a long time. You make her wash her hair everyday.

[RainthenSun11 in reply to Makbil86]

Her memory was not affected but everyday tasks like showering or brushing teeth,washing hair is very difficult. Her executive function of not being able to write essays any longer, or carry out planning the day is affected. This is hard to understand but she went from quite a high functioning young adult to not being able to do simple tasks plus the psychotic episodes.

[Makbil86 in reply to RainthenSun11]

She is the same to me. When I left the hospital,I was 34 but I was like a new born baby.I didn't walk and go to the toilet,I couldn't eat etc. If she could remember her past life ,she could plan and live like that. Maybe she can't plan but she can do the works.

[RachmaninovFan]

Hi RainthenSun, thank you for sharing your experience. You are doing an amazing thing to care for your daughter through such difficult times, you are being so strong.My husband had auto immune limbic encephalitis last year, which he is gradually recovering from. His scarring is in a different part of the brain, so our journey is different to yours, but I can relate to what you say about very good days and very difficult days, with dramatic and unpredictable mood swings.

He had fairly intensive treatment from March--July which has had some effect. Since then, we have settled into a pattern of life, of some sorts. He still needs lots of sleep and rest, the good days feel really fantastic, the bad days are very challenging.

You ask about a brain scan - if you can get one, do! Our consultant in our situation did not send my husband for further scans as he felt there was nothing further to see until he completely finishes his course of medication. But every encephalitis is different. Do ask your consultant for a scan, if you have concerns or want more information about how your daughter's brain recovery is going.

Instead of a scan, we changed medication about 6 months ago to help with the mood changes, and for us that has had a positive effect. So even if your consultant says No to a scan, there are likely options to explore which might alleviate some of the anguish for you all on the Difficult Days.

I do hope you are able to find a treatment plan that helps and I hold you in my thoughts x

[RainthenSun11 in reply to RachmaninovFan]

Thankyou, your advice is so helpful and positive. I understand everyone has ups and downs and we are all in this together trying our best.,just wanting to do the best we can. I hope your husband is on a good road now. How lucky he is to have you. Thankyou. 🌷

[Makbil86 in reply to RachmaninovFan]

Hello, You wrote about a consultant you had. Who is that person a doctor or another person?

[RachmaninovFan in reply to Makbil86]

Hello! I'm in the UK, the consultant we had is with the NHS and we met him in the main hospital. Our local GP was very helpful in the early stages: the A+E doctors couldn't see anything unusual on my husband's brain scans, so our own GP doctor kept contacting the hospital to get more specialist help as he was clearly Not Well and noone knew why... after a few weeks, the situation was referred to a neurology and epilepsy consultant -- who diagnosed and has overseen his treatment since then.

I'm not sure if that answers your question?! But I hope it helps you to understand our journey a bit better

[Makbil86]

Yes Thank you for the answers.I see your journey.What is the NHS?

[RachmaninovFan in reply to Makbil86]

Sorry, I missed this message!What is the NHS... It is the National Health Service, provided by the UK government. In the UK, the NHS offers health care to everyone.

Sometimes it takes a long time to see a Doctor, because the queue is very long, so some people pay for private healthcare to see a doctor quickly.

Myself, I can't afford private health care, so I am very grateful for the NHS!

[Makbil86 in reply to RachmaninovFan]

Thank you for the information. Never mind missing the message.You give importance to my answer.It is very kind of you.I see in the UK you can reach a treatment about encephalithis. But im my country it isn't like that

[AlinaEncepSoc]

Hi, good advice from community members here, but please don't hesitate to get in touch with support team at Encephalitis International [e-mail] if you still need to talk about these issues. We also have a parent peer support group which meets monthly encephalitis.info/online-pe...

[Nkc1212]

It's going to be okay with time. What she needs most right now is your strong support and understanding, and it sounds like you’re already doing everything you can for her. I know it’s not easy, and I really admire your patience.

I can relate to this on a personal level. Two years ago, as an international student far from home, I went through a similar struggle. It was miserable being stranded, with no one around and feeling completely lost. But I was lucky enough to have the best mom who did everything she could to bring me back home, despite facing so many challenges herself.

It took time and a lot of care, almost like being treated like a newborn again, but gradually, step by step, I started getting better. Relearning everything, finding small victories along the way. Fast forward to today, I’ve managed to return to where I left off, completed my studies, and I’m slowly getting back to a normal life. It’s still a struggle at times, but looking back, I know that taking it slow and letting time heal was the best way forward.

I know it’s hard to watch her go through this, and I truly wish for her to recover quickly and fully. But please remember that it’s okay to take the time needed. Progress is not always linear, and patience is key. Wishing you and your family strength during this tough time, and I hope she continues to improve with your love and support.

[RainthenSun11 in reply to Nkc1212]

I really needed to hear your message! Thankyou. What you explained with starting from a small child again and relearning behaviours is what we are going through. I'm glad you are so much better. Can I just ask if you struggled with correct judgement and impulsivity?

[Nkc1212 in reply to RainthenSun11]

Thank you so much for your kind words. I really appreciate it. To answer your question, yes, I do experience mood swings and sometimes struggle with impulsivity. However, I've gradually learned to recognize when it's happening and try to adapt, acting more cautiously even though I'm not always monitored. It's something I’m constantly working on.

I truly believe that connecting with someone who's going through similar challenges can make a huge difference. If it would help at all, I’d be more than happy to be there for you and your daughter. If you ever need someone to talk to or just share the tough moments with, I’m here. You don’t have to go through this alone, and I’ll always listen without judgment.

We’re all in this together.

[RainthenSun11 in reply to Nkc1212]

Oh my heart leaps for joy for the kindness of people in this group and for you being "available" Thankyou, thankyou, thankyou 🌻

[baskingoutinthesun]

Experiences can be very different and yet have many very similar underlying traits. I had pyschosis and the my brain function was left decimated and it took me a number of years to recover. Initially I couldnt think, reason, remember and I was virtually incapable of interacting other than a few words. I also lost teh fundamental concepts of how things worked (a kettle, a toaster, a hob). In fact even now there is a period of over 2 years I remember very little of. There are support groups on video both here and the Autoimmune Encephalitius Alliance in the US, which as well as day to day support groups and people you can just talk to. It also does parent/carer calls where you can discuss symptoms and general groups where you can discuss with other carers and also those with enecephalitis. Also There are quite a lot of books about the experience Brain on Fire being one of the most recognised.

Unfortunately the degree of recovery and the speed of recovery varies a lot and it very much individual. You may find joining the support groups helps you understand the variances. It took me personally about 6 years to recover full cognitive function. I wrote a book about my own experiences (you will find many have), which if its of interest I will happily give you a copy.

[RainthenSun11 in reply to baskingoutinthesun]

Thankyou for sharing that. Your story is quite profound. It's the first I've heard that'd quite so in depth. It helps to know that even though it must be so hard for you. I very much thankyou for your message and wish you much health.

[RainthenSun11 in reply to baskingoutinthesun]

Also interested to hear about your book or grab a copy.

[baskingoutinthesun in reply to RainthenSun11]

I woudl suggest you read Brain on Fire as well. That was a best seller (probably the most read book on encephalitis) and she suffered heavily from pyschosis in the early stages though here recovery was very rapid. I would strongly recommend the support groups. For me the US ones were fantastic (so many incredible people in these forums, it has been one of the greatest pleasures of my life to meet them)

[baskingoutinthesun in reply to RainthenSun11]

Shoudl you wish to as well feel free to open a chat with me if you have any specific questions.

[baskingoutinthesun]

Hi this is a link to the Audible book (sorry its my voice).

Please enjoy one free audio review copy of Closed for Repairs, now available on Audible. Redeem the one-time use code below at audible.co.uk/acx-promo

5T9G9GBW534K3

Its an amazon company, you dont need a subscription with audible (it will just add it to you lubrary) and you will have access to the book through audible on an ongoing basis. The login is amazon. There are apps on IOS, Android, FireTV and most smart TV's and tablets. If you dont get on with it let me know and can sort out a printed copy. You are welcome to ask as many questions as you like, if you do listen to it, as you go. Its my voice (apologies LOL). It was written in the final stages of my recovery. Its a one time so please anyone else dont use it, just ask me for another

[Gandalf2]

I have similar damage and this can cause the following signs and symptoms:

Movement - Tremor, Apraxia, Dystonia, Gait abnormality, Dyspraxia

Emotional - Difficulty in inhibiting emotions, anger, excitement, Depression, Difficulty in understanding others' points of view

Behavioral - Utilization behavior, Perseveration behavior, Social disinhibition, Compulsive eating

Language signs - Aphasia, Expressive aphasia

Treating these varies from individual. I like card games, short packets of information and nothing too much going on at one time. Too much information of any kind makes me dizzy, so I can't watch TV or cope with going out socially or shopping in supermarkets etc. I also have no sense of taste or smell.We get support from our GP but it took 18 months to arrive. Maybe you should call the Enc helpline. Good luck and best wishes, G2

A day out

[RainthenSun11 in reply to Gandalf2]

Thankyou for sharing Gandalf2. Do you get therapy ie. Neuro psychology or speech therapy? You seem to have found what triggers you and stick to things that you like and that's a big positive. I think in all of our cases support seems to be key. People to share with so we don't feel quite so alone. Best wishes and thankyou.

[Gandalf2]

Hi Rain, your reply is very nice. It's a busy world so it's nice to meet a kindly face A lot of people are happy to get a boost in some form or another. I gave a man a load of tobacco, papers and some lighters - he was very happy. Others just need some courtesy or a hello.

We received support via a social worker who was attached to our GP. It comprised physio, psychology, psychiatry, speech therapy, dietician, occupational therapy and counselling. It took over a year to organise, mainly because the doctor's promise of support was worthless. Like you say, we have find what works and doesn't work for us. TV is a no-no as is any loud flashy scenario. Absolute silence with closed eyes or in a dark room is quite good fun.

My memory is very short-lived and I wear a 'hidden disability' lanyard and lapel badge. All friends have disappeared and my wife and sister do all the personal stuff now. Amazon etc. do all my shopping, so I barely need to leave the house. An electric car with total self drive option might be workable but we manage with an old Toyota.

Brain exercise in the form of Scrabble, patience, crosswords, writing, drawing is vital as is walking, rowing machine and hiking, may try sailing in a dinghy this summer.

I also suffer from osteoporosis, spinal injuries, UTI's, anxiety, PTSD and panic attacks but I'm 75 and have had a full life. So I'm OK with things most of the time but suicidal thoughts do occur sometimes. I have a crisis line but haven't used it yet. Most moods pass one way or another. I wear a catheter to stop UTIs and that is quite an addition. Pee in a bag.

I'm not allowed alcohol but three glasses of white wine goes down well. Interestingly I don't get hangovers. Sleep is good, I slept for 14 hours recently and felt like my old self again. Brain repair takes place when you are in REM sleep. Back pain is my main issue and I have Paracetamol and morphine on prescription. Only allowed it every four hours or so but this can vary - hence 14 hour sleep. Pain becomes routine and my sense of taste may be coming back.

Better sign off, best wishes, G2

heron dinghy