Hi everyone,
My partner had HSE and autoimmune encephalitis almost 3 years ago. He was doing great… he recovered about 70% from his baseline. Last week he had 3 major seizures since he was at the hospital with HSE. Has anyone had similar issues years after recovery? If so, we’re you able to control with meds? His doctors asked him to cut all caffeine, increased all meds and now he is left with some aphasia and extreme fatigue. Thanks!
JM
Hi jujumello82,
I'm so so sorry to hear about your poor partner. 3 years is not a long time, it's still early days yet.
I had Herpes Simplex Encephalitis the day after my first birthday and I was diagnosed with Status Epilepticus at the same time so I would have been 4 when I was in your partner's position. I have no idea about what percentage of recovery I improved at baseline as you can read why, but I was regularly in and out of hospital with repeated convulsions every time I picked up a virus, infection, bug etc but somehow as I got older this became less frequent. I was still on the same medication until I was 10 when I was hospitalised for 6 weeks while they changed it, so it reduced hospital admissions because my then grand mals as doctors used to call them in those days, became less and less I went 1, year free, then I had one, then I went 2 years free, then I had one, then 4 years free then my last one in my adolescence and in the end they just stopped when we weren't expecting it so that was a nice surprise to gain my freedom. It's 29 years now since I last had one. I was an adolescent at the time when they first stopped so that's the good news. I now suffer from profound complex Obsessive Compulsive Disorder- OCD . Caffeine did not affect me but it might be a trigger for your partner's seizures, just like picking a virus/bug/infection may not be a trigger for your partner because everyone has different triggers. I now don't have any triggers, I just take my medication and plod on. Please feel free to ask me any questions at all. I'm always happy to help you and everyone on this forum. I enjoy helping people which is why I become a volunteer for the Encephalitis Society 3 and a half years ago. I did used to sleep off my convulsions though but if I was well enough to go to school or go for a family day out etc no fatigue. I have had other after effects like paranoia, anxiety, panic attacks, depression, OCD, disinhibition, I have a slower processing speed and a short attention span,
executive functioning was worse when I was a lot younger, and so was my insight.
Hmm? I think I may well have had aphasia when I was growing up but that has massively improved now. I think the Encephalitis Society would agree.
My Story is on the Encephalitis Society website under Your Stories - then scroll down to my name.
I hope this helps.
Paula-38
Hi jujumello82. . Your husband’s situation sounds similar to mine. I had seizures when I was first diagnosed with HSE in 2013, but they were brought under control with Keppra in the first year . I went on to recover enough to work mornings.
In 2020 I caught COVID and I began having seizures again . In hindsight, I had been doing too much , as I had previously always had a sleep after work, but I had stopped doing this when my lovely Dad became seriously ill .
I ended up having 5 grand mal seizures in one day which landed me in hospital . When my epilepsy meds were increased, that brought the seizures back under control, and I now see an epilepsy specialist. He said my seizures were caused by my body becoming used to the previous dose of epilepsy medication , so the plan is to increase the dosage if I have a seizure ‘flare up’ again in the future .
I think my epilepsy is definitely linked to fatigue . I know that if I overdo things , I risk having a seizure , so I haven’t returned to paid work since 2020. Now I just do voluntary work so that I can rest if I’m very tired, and I can also say ‘no’ to an event without the stress of trying to get a Drs note for my absence .
Hopefully Drs will be able to bring your partner’s seizures under control again, too, with the right dose of meds. 🤞🏻If you have any questions about epilepsy, please don’t hesitate to ask.
Hi jujumello82,So sorry to hear about your partner's recent struggles.
My husband got Enchelitis H1 in May 2023. He spent 9 days in the hospital (4 of which were in ICU). Using electrodes on his head to continuously monitor the seizures (they were small seizures but frequent and not usually outwardly visible), they administered different drugs at different doses for about 3 days before getting a cocktail of meds where he went for 24 hours without any seizures. At that point they felt they had the meds that worked for him. It is a combination of 3 different anti-seizure medications: 1 med is taken three times a day, and 2 different meds are taken morning and evening. As far as we can tell, he hasn't had any further seizures since then. We haven't really learned about trigger mechanisms other than what was said in the 'Letter from My Brain' posted on the Enc website.
Hi JuJu, I'm sorry to hear about your situation. My seizures have been brought under control using Gabapentin and Levetiracetam. I'm now in a status epilepticus situation - meaning my next seizure could be fatal. There is lots of info on drugs including patient reviews at drugs.com/
Cutting out caffeine seems like a good idea. I have no sense of taste now but caffeine free coffee and tea are still pleasant.
Recovery takes a few years, I think I'm in my third or fourth year now and have regained a lot of my former self but am still being treated for Enc, PTSD, anxiety, depression and panic attacks. All seem to be under control but I'm still wary of quite a few situations where things may be unpredictable - loose dogs, children on scooters, traffic. It may take time to get the meds cocktail right.
Decision-making is difficult so even packing a suitcase is tricky. Extreme fatigue is part of Enc. and so is aphasia. There are other symptoms too. There is a lot of info on the Enc Soc website - I find it helpful to copy and print out these so I am reassured that my condition is not so random and myterious.
Your brain can take on some of the tasks that the damaged cells used to do. This is called neuroplasticity - so it is vital that you keep exercising the brain with reading, puzzles, Scrabble, card games etc. and practise the old routines that used to be automatic such as making coffee, washing and shaving etc.
I had forgotten how to walk, use the toilet and dress myself - in a way it's like being a toddler again and it's possible to pick these things up again. I had forgetten most of my life, marriage, bereavements, work etc. and had to figure out who the guy in the mirror was. Quite funny.
Everything has improved with rest, diet and exercise - motivation is key.
I still can't drive a car so my wife takes care of complex things and I need a rest after seeing a doctor etc.
I'm finding that using an Orgone Accumulator is helping to restore things generally. You can buy readymades in the US for a few thousand dollars. I made my own using the plans in the book: The Orgone Accumulator Handbook: Wilhelm Reich's Life-Energy Discoveries and Healing Tools for the 21st Century, with Construction Plans Paperback – Illustrated, 25 July 2010
amazon.co.uk/Orgone-Accumul...
If you can cope with some carpentry and materials handling and have some work space and basic tools you could perhaps make your own. It's a metal and rockwool lined cabinet you sit in for half an hour or so a couple of times a week.
Good luck and I hope your husband has a speedy recovery.
G2
Could be the meds, could be lifestyle - e.g. alcohol, low immune, was he vaxxed, does he exercise? 3 years is still early. We don't fully recover and recovery takes a long time. You should be getting rehab support from the NHS via your GP, social worker.
Hello! Sorry to hear about your husbands issues - I had viral encephalitis 9 years ago and I'm left with fatigue and aphasia too. I currently have to sleep every day almost to reset my brain again - it only seems to last a few hours. But I have found that I can do days without a sleep as long as I can rest the next day.
I have found an aphasia group near me that have helped me so much - I think being part of a group of people that understand has been priceless for me. The Encephalitis Society have also been this support for me and I have met some wonderful people but I think as the aphasia group is local, I do more with them. Do you have anything near by that might be helpful? Hope you are both ok x
Progress Update
General questions about Encephalitis
Is anyone out there?
