10 years post-stroke with epilepsy, weird stuff going on

TLDR: 10 year stroke survivor with epilepsy is having strange symptoms. Have others experienced similar things?

My person (36M) had an ischemic stroke almost 10 years ago. He made it out in pretty amazing shape, has somewhat limited feeling/numbness on the right side of his body but overall he’s living a pretty normal life. About a year post-stroke, he was experiencing these feelings of “something is really wrong,” and after some research and speaking with his neuro, we learned that he was having simple-partial seizures from epilepsy that developed due to the stroke. That has all been managed with medication since then. He has never had any type of seizure other than the simple partials, so the symptoms were mostly aura, emotion, and changes in sensation on his stroke side.

He goes through periods of time where he has “weird” feelings on his right side, sensory changes, numbness where there isn’t usually numbness, less sensation than normal, etc but it usually only lasts a couple days. Those periods are usually when he’s extra stressed or if he had way too much to drink the night before. The first time was after he played a hand held video game, which he has not done since.

He’s now in a period of about 2 weeks where these feelings haven’t gone away, and woke up this morning feeling like everything is worse. He couldn’t feel his hand on his phone, his foot on the floor, or his face when he was talking. We did the FAST test and everything is normal, and after drinking water and some walking around, he has regained some sensation but not close to his “norm.”

We are wondering about Non Epileptic Seizures, stroke progression, anxiety causing sensation changes…or what?

Things that could be factors:

screens (he works in front of a computer all day, watches a lot of TV, is on his phone a lot)

caffeine (2 cups a day, sometimes a soda)

alcohol (he drinks a few times a week, the night before this current phase started he definitely had too much and woke up feeling really weird the next morning. He has not been drinking this week, he was hoping that would help, but it hasn’t.)

dehydration (none of us drink enough water…)

food (he does not eat very well)

stress (he does not manage stress very well, is understandably scared by these feelings, he is uncomfortable talking about this stuff or taking action)

pinched nerve (he’s had a pinch in his neck on the opposite side for a few days, could that be somehow affecting his stroke side sensation?)

anxiety (from what I’ve read about NES, it’s like a panic attack where your brain thinks it is having a seizure without any measurable activity. The first time this happened with the vudeo game, he did an EEG that registered nothing even when he felt multiple changes during the test.

It doesn’t feel like it’s an emergency room situation, he’ll call the neuro first thing Monday, so I’m just wondering if other folks have had similar experiences?

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Hi , sorry to hear this hope everything is ok . I have just started having seizures one year post stroke and my doctor won’t give me medication until he has spoken to my neurologist who has lost my notes !! Hope you get it sorted x

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Damn ! Im sorry to read about this. My partner Suzanne has those seizures too, the last one on the tube!! It’s always best if you can keep all your ducks in a row. Eat well don’t drink too much (Suzanne’sneuro said a glass of good red was fine) always take medicine at the same time each day all the usual stuff but I’d certainly get on to someone about the. notes! We have a system here that notes are culled if you haven’t been in the system for 10 years. My

Good luck

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This link contains a document which covers all sorts of issues post stroke including a number of entries on seizures.

https://ebrsr.com/

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@tater hi & welcome to the community. There certainly sounds likexa lot going on there. Speaking to a medical professional is definitely the best thing as they can make sure he is checked over properly.

There is a condition called Functional Neurological Disorder where people suffer non epileptic seizures amongst other things & it might be worth a look at Functional Neurological Disorder (FND) – A Patient's Guide to FND

I’m not medicly trained so this is only a suggestion & his symptoms could be many things.

Best wishes.

Ann

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Hello and welcome @tater

Does the reference to “emergency room” indicate you’re in the US? - There are a few folks here who are :slight_smile:

The symptoms you describe and the possible linkages to causes are all plausible. There are many stories on here about similar.

When the cause and effect is not obvious then one strategy is to keep the diary of both. On the causes side are bright lights, hydration, noise, nutrition, stress, medication etc I think you had already illustrated awareness but I think as widely as you can. On the effects side the same story - I think is why the as you can try and identify onset duration, how it feels does it disappear quickly or slowly etc

Then look for correlations with it maybe hours or days apart look for trends cross multiple days for similar events like 2 days after a monthly hospital appointment for example or red wine not white wine or…

As the medical professional calls changes ‘decompensations’ are not uncommon, Neurological changes while mostly happening within a year or so can occur even decades later. What is normal or abnormal in a population of many people is an unreliable guide to any individuals circumstance.

Definitely reaching out to a medical team brings a mix more informed and less visceral knowledge - It’s a voyage of discovery I guess :frowning:

Ciao
Simon

I had post stroke seizures too. 12 weeks after they effected my whole left side (my bleed was on the right frontal lobe). I actually went to A&E, I was put onto my earlier stroke doctor I had seen when I was first there, he put me onto x2/day anti epileptic tablets. So far they have worked. Sadly, I cannot drive for 1 year following the last seizure. My doc told me it was nerves trying to work through my bleed scar.

Talk to the stroke doctors / appropriate medical teams as Simon has suggested. To my understanding, it depends on the damage type from the stroke. We all have our recovery ups and downs, with some drawbacks. We have to take them in our stride and move forward in our damage control/management.

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