Autoimmune epilepsy or autoimmune encephalitis?

[rworthin]

Hello everyone,

I was wondering if anyone had autoimmune encephalitis that caused your epilepsy? Or any autoimmune epilepsy? John’s Hopkins is thinking that this is what has caused my seizures. My seizures have never been fully under control from the first one that I got at age 19. I have been on countless combinations trying to control my seizures with will results every time. I am now 42 and am still looking for answers. If anyone has any thoughts I would truly appreciate it, thanks!

-rworthing

[AlexT]

I have taken seizures since early childhood that stopped for a very brief period. Like yourself, i have also been on probably every medication to try and control them with no luck. I have had EEG tests done in childhood and as an adult, neither of which showed typical epilepsy. I know my body better than any doctor ever will, and i do feel that my seizures are caused by something like autoimmune encephalitis as there have been many times i have taken seizures and been hospitalised as they have put me on antibiotics as my symptoms sometime resemble that of meningitis.

I am in my late 40's now and i doubt i will ever receive a proper diagnosis in my lifetime. I think a lot of doctors have never even heard of seizures caused by autoimmune disorders, never mind being able to diagnose it properly.

[rworthin in reply to AlexT]

Hi AlexT,

Thanks for answering my question. By any chance do you find that epilepsy drugs like lyrica and keppra help you the most? That is what I am discovering. I have several autoimmune diseases one being called Stiff Person Syndrome or SPS. This type of autoimmune disease causes horrible muscle spasms (they can be strong enough to break bones and tear ligaments) and ridgity. Plus, it’s progressive. It also can cause full body spasms that look like grand mals only you are awake. It is very a rare possibility as low as 1 in a million. However, in about 15% of patients have uncontrollable seizures located in the temporal lobes. The seizures are not able to be controlled easily or not at all by medicine. They figure out what you anti-GAD 65 levels are and if you have basically any level they will look into it further. You are not supposed to have any in your bloodstream.

I just recently went to a neuroimmunologist in John’s Hopkins for my SPS. He wants me to come back to see an epilepsy specialist. That way they can try to figure out the best medicines for me for both epilepsy and SPS because the medicines often overlap. Plus, he would like to try to get my seizures under control the best as we can.

Best of luck,

Rebecca

[AlexT in reply to rworthin]

Hi Rebecca,

I went through every medication and the only one that made any noticeable difference and that i could actually tolerate was keppra(levetricacetam). I started taking that away back when it was literally just released on the market , around 2008 i think ??

I take 1500mg twice per day, but a few years back i noticed that it started affecting my mood and made me easily irritable among other things.

I too suffer from muscle spasms and was actually wondering if it was another side effect of the keppra that was not known about when they released it to the public.

With the issues with moods and anger swings, i seen a neurologist that said they could offer me a replacement for the keppra. Made by the same people who make keppra but with less side effects. It's called Breviracetam ....... I have not taken them up on the offer as of yet as i am fearful that they might set me back to a worse place than i am at the moment.

They originally made out keppra was a wonder drug with no side effects and feel that they might be making the same false claims with this new drug.

Best wishes

Alex

[grahamb]

I'm not sure if this will help, but I have Sjogrens Syndrome and nocturnal epilepsy (tonic clonics at night, simple partials in day). The seizures began when I was about 20, and the Sjogrens when I was about 30. I use Tegretol (carbamazapine) which stops the tonic clonics, unless I overdo it in terms of exercise/work/stress, in which case I need to increase dosage. I have wondered if these two conditions are actually one.