Coping with conic-clonic seizures (and post-ictal memory loss?)

[iwasphone]

I had my first tonic-clonic seizure last thursday. Actually, it was my first known seizure ever, although I have experienced the same aura numerous times in the past without anything coming of it.

It was very strange for me. I was there one moment, gone the next. When I was finally coming out of it, all I could see were colors (yellow, white and tan) and I couldn't remember literally anything except for language. I experienced a rollercoaster of emotions ranging from familiarity and calmness to terror and dread.

The entire ordeal lasted about ten minutes altogether, which I hear isn't very commonplace. I was wondering, are seizure times inconsistent? I regained my memory after about an hour, but I couldn't say if I'm forgetting anything that isn't immediately used knowledge.

I have a few questions if anyone would mind giving me some insight into your own experiences. They go as follows:
0. How old were you when you were first diagnosed?
1. What are tonic-clonic seizures typically like for you?
2. Have you ever experienced memory loss during this time?
3. If so, what is the longest amount of time your amnesia lasted?
---If so, how do you cope with it?

I have been considering carrying around a notebook in my purse that has basic information about myself in case I'm ever in a situation where I've had a seizure and I'm by myself or something.

4. Do you think I'm over-preparing?
5. Do you have the same post-ictal response every time or does it change?


Thank you so much for taking the time to read and answer questions if you answer them. <3

 

[Silat]

I was diagnosed at 22, but my seizures began at age 17.

T/C's start as a simple partials, and then spread in to a complex partial. Sometimes, but it's pretty rare, they continue to spread into a T/C seizure, but normally they stop at the partial-complex stage.

My memory around each event is pretty much gone. I can remember up to the point the simple-partial (aura) began and pretty much nothing after that point. I then can remember things from about 15 minutes after I am awake, but the 15 minutes from when I first wake up to that point are complete darkness. I can't rememeber a thing.

15 minutes or so is the longest amount of time I've had amnesia. The memory loss that prolongs typically doesn't bother me, because I don't dwell on my seizures. I just note that I had one and move on about my business.

Keeping a notebook is a good idea. Consider keeping a journal/log of your seizures as well. It'll help establish patterns and may even help identify specific triggers if you're detailed enough.

My post-ictal is pretty consistent. It typically will vary a bit each time, but the general idea of how things go is consistent. It seems to effect my memory and speech most severely, though my awareness after the 15 minute period is complete, my ability to speak and communicate is impaired for quite a while afterwords.

Side note: I was wondering who was phone... turns out, you were phone. Mystery = Solved.

 

[iwasphone]

Yeah, that sounds pretty much like what happened to me. I can remember the aura and thinking that it was weird that there was a yellow tint on everything and then I was out! And I'm also glad that "waking up" is acceptable terminology since I wasn't sure if I should use that term.

I was half-worried I was being overworried about it, but I think I'm definitely going to do it--especially if it can help work out triggers and things like that.

Side note: Yeah, I'm surprised by the sheer amount of people who still have no idea!

 

[Silat]

I saw in your Foyer post that you've not gone through the diagnostics yet...

Keeping a journal can be a huge help for that part.
Just got to make sure to show it to your neurologist.

 

[iwasphone]

Oh, then I definitely will! I brought testimonies from my roommates when I went to the doctor which I think really helped get the whole "did she, or didn't she" out of the way pretty quickly.

 

[RiffRaffMama]

Hi Iwasphone, welcome to our world I'm sorry you're feeling uneasy and confused but that's very very normal. It will pass with time and you'll grow somewhat accustomed to it all and dare I say it, even comfortable with everything in answer to your questions:

I couldn't remember literally anything except for language. I experienced a rollercoaster of emotions ranging from familiarity and calmness to terror and dread.

My very first seizure was exactly like that. I awoke alone to find I couldn't remember a single thing. The only phone number I could recall was the emergency services and I could barely tell them my name let alone the address I was at.

0. How old were you when you were first diagnosed?
1. What are tonic-clonic seizures typically like for you?
2. Have you ever experienced memory loss during this time?
3. If so, what is the longest amount of time your amnesia lasted?
---If so, how do you cope with it?

I have been considering carrying around a notebook in my purse that has basic information about myself in case I'm ever in a situation where I've had a seizure and I'm by myself or something.

4. Do you think I'm over-preparing?
5. Do you have the same post-ictal response every time or does it change?

0: I was 25.
1: I don't recall them but I'm told I do the traditional hit the deck and flap around business
2: Other than the first time, I'm usually ok with memory afterwards. I'm upset and confused, and sore, but I can recall who I am and where I am nowadays.
3: Only lasted about half an hour the first time around. I just waited til it passed. I was more concerned with working out how I'd ended up on the floor in the foyer!
4: Not at all. Whatever makes you feel more comfortable and prepared. One of the first things I did was go out and buy a medic alert bracelet.
5: I'm the same each time; confused, upset and tired and sore.
Good luck with your journey

 

[iwasphone]

My very first seizure was exactly like that. I awoke alone to find I couldn't remember a single thing. The only phone number I could recall was the emergency services and I could barely tell them my name let alone the address I was at.

Oh my gosh, you poor thing. I'm glad you at least remembered emergency numbers! That must've been so scary for you. ): I'm glad things are not so stressful during your seizures now.

Whatever makes you feel more comfortable and prepared. One of the first things I did was go out and buy a medic alert bracelet.

Haha, humorously enough, that was exactly what I did today! Or rather, what I've created today. I'm going on a long trip on public transportation and my first thought was, "what if it happens and I'm around strangers who don't know what's going on?" So I found an old cat color and wrote "SEIZURE DISORDER" on it and it will do for now! I'm definitely going to be getting a regular one that's not so short notice very soon, lmao.

Hi Iwasphone, welcome to our world I'm sorry you're feeling uneasy and confused but that's very very normal. It will pass with time and you'll grow somewhat accustomed to it all and dare I say it, even comfortable with everything in answer to your questions.

I'm sure you're right, I'll definitely get used to this business and won't be so bent out of shape. Changes like this take time, after all. Your insight has been so helpful, thank you so much for your response!

 

[Nakamova]

0. How old were you when you were first diagnosed?
1. What are tonic-clonic seizures typically like for you?
2. Have you ever experienced memory loss during this time?
3. If so, what is the longest amount of time your amnesia lasted?
---If so, how do you cope with it?

-- I was almost 35. Diagnosed quite soon after my initial seizure.
-- My tonic-clonic seizures vary in intensity. The worst ones were the first (13 years ago) and the most recent one (which was 4 years ago). I think the last one was made worse by dehydration, low blood sugar -- side effects of the anti-seizure medication I was taking at the time.
-- Yes to memory loss. The more intense the seizure, the greater the memory loss. Generally, the immediate amnesia (where I can't tell you what day it is or who's president, etc.) wears off after an hour or so.