Rehabilitation after anti NMDA receptor encephalitis

[Pacient1804]

Greetings to all! Ellina began to talk, to walk without support, and her tracheostomy was removed. She says it's September 2020, that she's at home in her Mom's room. That I went to school today and other nonsense. They're still in rehab. She refuses to eat through her mouth, says all the food tastes sour and she has a full stomach! You have to feed it through a hole in the stomach. The period of excitement and hallucinations was replaced by apathy and irritability! Refuses to take classes. In this regard, we would like to know if there was something similar in your rehabilitation period, we are worried that this is a rollback, please share your experience.

[alpappy]

For me the food four years on is still a major issues everything tastes awful Just eat to survive !

[Gandalf2 in reply to alpappy]

I'm about a year on from my first of many seizures, the NHS A and E saved my life several times, ambulance, oxygen, defibrillator, etc.. Spent several days in induced coma on drips and 24 hour watch. The dream states and hallucinations can be very interesting and worth writing down. For some reason photographs and videos are not allowed but would help a lot in gaining an understanding of one's situation and recovery.

Have now been discharged to home and am slowly coming back to normal, and am told it will be another year. I'm having to learn how to shave, walk, write and deal with everyday problems and situations and the unexpected. Luckily I can read, talk and type and comprehend most of what is happening. Long term tasks and sequential thinking is pretty hard - but still a long way to go. Memory is pretty patchy and keeping a diary and notes are essential.

My wife has stepped into the breach, is newly retired and handling the shopping, cooking, medication, appointments etc, etc. We get financial support - attendance allowance and carer's allowance - which helps a lot with the extra costs. I don't think I would have coped on my own. Food tasted awful for the first few weeks and is starting to resemble what I remember.

Suicidal thoughts have lessened and fatigue has improved and I have managed a few short walks and some Pilates type exercises. Have found an osteopath who has helped unstiffen my joints which have lost flexibility due to osteoporosis and being bed bound. Fatigue is a big problem and a major obstacle to regaining mobility, carrying a walking stick helps to alert people to your condition.

The NHS ward staff were amazing but the aftercare is almost non-existent, despite many promises. You get passed around and hear stock phrases like "Tell us if it gets any worse", "We'll look into it", "I'll be back in ten minutes" (2 hours). The sooner you get mobile and independent the better - morale is important and respecting the staff and their work helps to create a good atmosphere on the ward.

Many of the patient's attitudes are pretty appalling in terms of attention-seeking, constant moaning and demands. How the nurses and staff cope is beyond me, though the doctors and consultants can be pretty disinterested and hard to reach too. I have found the Encephalitis Society information invaluable and the forum helps a lot in gaining a perspective on things.

It's a long way back to the world you once knew but the human capacity for recovery is astonishing given the degree of helplessness during the early stages - hang in there!

Life on Mars

[Pacient1804 in reply to Gandalf2]

Thank you so much for your story! I wish you a speedy recovery!

[Ocean96]

Hi there,

I'm so glad Ellina has started to speak, great news!

I had Anti-NMDA Receptor Encephalitis in 2017. When I first started speaking again, I was very confused as to where I was and what had happened. Personally, I got better over time but I needed a lot of reassurance and reminding of what was actually happening.

I think recovery, takes time and patience and I know it's frustrating but from my experience, it does get better in time. I think if she's not engaging in therapies, it would be good to keep her motivated with treats after each session or getting the staff to really encourage her to take part.

It's not easy but thank you for reaching out - we understand and support you!

Here is a story of a girl with Anti-NMDA Receptor Encephalitis and her recovery which may be helpful to read - encephalitis.info/hannahs-e...

[Pacient1804 in reply to Ocean96]

Thank you so much for your response! You are a very kind and sympathetic person! May the Lord protect you! Let me ask you one more question: did you receive antidepressants during the rehabilitation phase, and what was your reaction to them? I associate the change in Hellenic mental state with the beginning of the adoption of Zaloft.

[Ocean96]

Hi Pacient1804

Thank you so much for you're kind words - you're so kind!

Yes, I did, I found it helped with some of the residue psychological symptoms I had during rehabilitation and recovery. My doctor slowly weaned me off them over the course of several months on the basis my psychological symptoms were improving.

[Pacient1804]

Can I ask you another question? Have you received any nootropic drugs during the treatment phase? If so, were there any atypical effects after taking them?

[SurferGirl1]

I have seronegative autoimmune encephalomyelitis. I too had, mutism, anorexia (needed a g-tube), and also catatonia for a long time - so bad that I couldn't swallow,. Irritability followed as I improved. I took risperidone for a long time. It cut the anger and it stimulated my hunger like crazy. Good wishes for improvement.

[Pacient1804 in reply to SurferGirl1]

Thank you so much for your response! How are you feeling right now? Unfortunately, there is no psychiatrist in the rehabilitation center where we are located. Unfortunately, Ellina's behavior is becoming increasingly unmanageable, and we are recommended to move to a center with a psychiatric focus for the selection of treatment with neuroleptics.