Intro post

[paulrichardf]

Hi all,
I am a 50-year-old man who experienced simple partial seizures in my late teens through my mid-twenties. I've been fortunate that they stopped for good at that point (although I did miss them somewhat, in a strange way).

I only learned later on by doing some internet research what I had been experiencing. This was back in pre-internet days, of course, and when I once tried to describe what was happening to my family doctor I got nowhere.

My seizures generally progressed liked this: I'd start with an odd, not unpleasant sensation, mostly in my head. A sort of semi-detachment from my present environment. After 30 seconds or a couple of minutes, I would then experience extreme despair and sadness, a very pure feeling that seemed unconnected to anything in my life. I used to describe it by saying that it was a sadness so concentrated that I would have to kill myself if it were to continue for any real length of time. When this passed I would just be left a bit disoriented. Towards the end of my time having seizures, I would also experience jamais vu. Again, at the time I had no idea what to call this sense of everything around me, my own home, coming through to my perception as something completely unfamiliar. Part of me would know that what I was looking at were the walls of my own room, yet they struck me as if I had never seen them before. A disorienting experience, but also fascinating. My seizures got worse before they went away: just more extreme and with more lasting feelings of sadness. I would feel wrung out and felt as though something might break eventually. Then they went away.

Because they no longer are a part of my life, my interest is less urgent, and I don't want to draw focus away form the good people on this forum who are still struggling. So I understand if there is no response.

The things I wonder about are:
1. Is there any evidence that simple partial seizures are hereditary in any way? I have two children, and I'd like to know whether I might expect them to experience anything like I did. I know that I found it extremely difficult to describe my experiences. They were so subjective. Nothing physical.
2. Does anyone know of any studies that have been done on people who experienced simple partial seizures, and how it might have effected them in later life, in any way.

Thanks for reading!
Paul

 

[Howll]

Hi Paul,

I've experienced both Simple Partial and Tonic Clonic seizures. But this year my simple partial seizures have increased and somewhat changed.

I must say that your description of a SP is the most accurate to mine that I've ever come across. I can't accurately describe the sensation, but it starts with a feeling of disconnect from my environment as yours does, then the fear and sadness kicks in and like you said, it feels like I will either die or need to die to get away from it. I also get a mild jamais/deja Vu, although the deja Vu is usually a start of my TCs. Only different being that I get a smell/taste which is like nothing I've ever experienced so also can't explain it.

I can't answer either of your questions but it's just so strange to see someone that has experienced almost exactly what I have.

 

[StrongerThanEpilepsy]

Hello and welcome! :hello:
I know you said that you "miss" your seizures. Maybe you felt as if the seizures were part of your life if they happened frequently and it took some readjusting to get used to not seizing for once? I feel strange if I go a week without one because mine are daily and I'm used to them. I'm relieved, but they are always expected and then the uncomfortable uncertain feeling comes because I don't know when the seizures will strike again or are they gone for good.

I don't know if there is evidence or not that simple partials are hereditary. The NIH has a medical library and you can read the abstracts on most articles. I do know though that since simple partials are focal seizures and start in one particular part of the brain, a lot of cases for focal epilepsies (referring to people who strictly have partials or it starts as a partial and then generalizes) are structural and there's either something vascular or some form of abnormal tissue causing the seizures. If I'm correct, generalized epilepsies are more likely hereditary.

 

[paulrichardf]

Thanks to you both for your responses.

Howll: Even though it has been years and years since I experienced my seizures, it is a good feeling to hear from someone who knows what I am talking about. Not only do I recall the seizures vividly, I recall equally vividly how frustrating they were to describe. I hope you are doing all right and that things get clearer and better for you.

StrongerThanEpilepsy: Thanks for your suggestions on the question of heredity. I'll look into them.
When I say I missed my seizures (back then I called them "spells"--because there was no physical aspect to them, I didn't think to call them seizures)--anyway, when I say I missed them, I missed the parts that weren't bad: the initial dreamy "aura," which made me feel like I was somehow detached and special, and even the jamais vu sometimes, which was disconcerting but also fascinating. I didn't miss the 2-minute bombs of pure despair.

Be well, both of you.
Paul

 

[Frink]

Dont know how I missed this.

Hi Paul,
Welcome to CWE. Glad to hear your seizures stopped, some people are lucky enough to "grow" out of their seizures, maybe something to do with neuronal pruning and the end of the growing adolescent brain.

Here is a link with some brief info on epilepsy and heredity. http://www.epilepsy.com/learn/epilepsy-101/epilepsy-inherited

I have simple and complex partial seizures, I am not aware of any studies only dealing with simple partial seizures and their effect on adulthood.

A simple partial seizure is just a small seizure localized to a small area of the brain so it should not be that different in future outcomes than any other type of seizure.

 

[seagull]

Nice intro the hereditary bit I believe grey area my dad had it but it was kept quiet that the days of ignorence I have it had boink but often wonder if I had mild e before boink awful panic attacks nothing like bog standard anxiety attack I felt I was losing becoming unconscious which I was.then my daughter born with it.I think in our case we had lower sz threshold someone else same boink may well walked away

tHere are some forms of e that genetic and tends to be nasty type where life expectancy will be a fight for families.
it can be difficult as soon as you mention the panic aura you got game on with doc trying convince them it not ordinary panic and very physical

 

[valeriedl]

I'm not sure about hereditary. My husband's father has epilepsy, who's in his 70's, only had seizures when he was in his 20's. Hasn't taken any meds since he was in his 30's and hasn't taken any since then or had any seizures since then either. None of my husband'd father's brothers, sisters, children or grandchildren have it. I don't know if any of my husband's father's family before he was born have it though.

I don't think anyone in my family have it but I know my grandmother started falling out of bed when she was in her late 70's. Her dr wasn't sure if she could have been having sleep seizures because nothing seizure like ever happened while she was awake or if it could have been some sort of side effect from one of the meds she was on. He put her on Keppra but she stopped taking them after about 3 months because the side effects were too bad for her, mainly the keprage. She didn't fall out of bed when she was on the meds or after she stopped taking them.

Nice to meet you!