Terror feelings with Simple Partials

[SimplePartialGal]

Anyone who experiences this let me know. I am seizure free now with meds that took forever to work. I used to get seizures on and off for 20 years that were debilitating because of the feelings of complete awful terror. I was helpless when they happened and couldn't explain this without people thinking I was crazy. The worst part was I was always aware it was happening and could not do anything to stop them. I just wanted to crawl up and make them go away. I experienced other things like bad headaches, sleepiness, auras, and loss of thought. Even though I have been free of this, it is still a part of my life that has affected me. I want to help and support anyone experiencing this terror.

 

[jyearta]

I too have times, many times of fear that just about stops me in my tracks.

I hate this also.

 

[CBernieBlack]

Yup. I have marked that as part of my aura when I'm about to have a seizure. When I start seeing my nightmares in waking life, I know I'm about to have a seizure.

Since we share similarities in episodes, has anyone talked with you from the medical side about temporal lobe epilepsy?

take care and hold fast during those waves of fear. I find breathing deep and just letting it wash over helps.

 

[RunningGirl85]

Yeah I get that too... I actually feel that way when everything goes kind of fuzzy, and it's how I felt before my last two T/C seizures. So yes, I know completely how you feel.

My neurologist thinks it's anxiety (I really suck at explaining these things), but I know the difference... this is why I'm being referred to an epileptologist though.

 

[SimplePartialGal]

I see I am not alone with these symptoms. Thanks a bunch for sharing. Mine haven't progressed into any T/C.

 

[SimplePartialGal]

I got the talks about anxiety and panic attacks and I wanted to just pull their hair out when I heard it again. I would get so emotional during visits (crying) that doctors thought there were other problems with me. I just wanted to be diagnosed correctly. I knew I had some type of seizures but I never heard of anything like SP seizures. I am glad you are getting more specialized help. I think that is a great idea.

 

[Hand of Blood]

I get the fear and I just stop what I'm doing for a sec it always ends up feeling like I'm not all there and I get flash backs of past sezures

 

[picklenose]

Hi

I wanted to post something in this thread because this sounds very similar to what I have. Except with me, I have these jerks (I believe they are called myoclonus but I'm not sure). Sometimes it's like a hiccup where I gasp or something a few times and then I get this terrible feeling of deja vu mixed with a kind of indescribable fear sensation. And every single time, I have this thought that something terrible is going to happen (Which sounds obvious because it's kind of an aura but it's different somehow). It's the exact same thought every time but I don't know what it is. But this is the weird part. I know what it is for just an instant right after but the whole episode is always followed by severe confusion and as soon as I come back to my senses, I forget what the thought was.

Sometimes this will happen several times in rapid succession and even though I'm still mostly conscious (if you can call it that) in between, I'm so confused I can't think properly. These episodes do sometimes progress to TCs and in fact, it's generally the only warning I have. If I can think straight enough, sometimes if I shake myself awake and stay awake for a little while, the TC doesn't happen. But I usually can't think well enough to do this. I just wake up suddenly with the jerk and the fear sensation. Since I never know if it's going to progress to a TC or not, there's no definite way to deal with it and I'm usually too confused anyway.

But then, of course if I wake up sometime later with a horribly bitten tongue and a splitting headache, I know what happened. The bitten tongue is almost always the worst part. Though once I had several TCs while sleeping in the span of a few days and I must have been sleeping on my stomach during one of them because I did something to my back and the pain was just terrible for weeks.

Anyway, these jerky fear episodes were my first signs of epilepsy when I was in my teens (I'll be 40 this year). I started dropping things in the shower early in the mornings while getting ready for school. I remember having these weird sensations of fear along with the jerking. Eventually, I did have a TC but the strange thing is that I can't remember anything beyond a certain point on either side of my first TC. I don't remember being told I had epilepsy. I don't remember being told I had a seizure for the first time. My memory of everything up to the point where I started taking Depakote and the seizures stopped is really spotty.

 

[Melanthanie]

It's not uncommon for me to feel utter and complete terror when a seizure starts and even after really that anxiety just stays with me. It always seems like people pick those times to be the worst to me too and because of that for a long time I thought I had social anxiety, but the more I think about it the more I think it's seizure related because I'm fine around people at all other times.

I ended up quitting my last job because I kept having partials and it was hard enough to work dealing with those. I generally have complex partials though I've also had simple ones, but my boss who I informed I had epilepsy and who has family members who have it and should understand it to some degree would just go off at me like I was doing it on purpose cursing and carrying on at me and that on top of the utter terror I felt because of the seizures made me go home shaking and convinced I had to quit and I'm glad I did. I only wish the company would let me talk to someone higher up because she harassed me constantly it just became too much to take when I was having seizures. Not to mention my seizures are triggered by extreme emotional or physical stress. I'm generally a very zen person unless I'm having seizures or I've just had enough.

It's the same with all my seizures though even when I was small and having grand mal's and T/C seizures rather often they would always start with a dull odd feeling followed by utter terror.

 

[qtowngirl]

I get this terrible feeling of deja vu mixed with a kind of indescribable fear sensation. And every single time, I have this thought that something terrible is going to happen (Which sounds obvious because it's kind of an aura but it's different somehow). It's the exact same thought every time but I don't know what it is.

hi pickle,
the repetitive part is a classic simple partial symptom. for most people that have true simple partials (aka aura), they are identical or close to every time.

But this is the weird part. I know what it is for just an instant right after but the whole episode is always followed by severe confusion and as soon as I come back to my senses, I forget what the thought was. Sometimes this will happen several times in rapid succession and even though I'm still mostly conscious (if you can call it that) in between, I'm so confused I can't think properly.

the severe confusion is a complex partial; partial consciousness with no or not much recollection afterwards. fairly common for a simple to lead into a complex. horrible tho.

Since I never know if it's going to progress to a TC or not, there's no definite way to deal with it and I'm usually too confused anyway.

when it hits, get to a safe, quiet place where, if it does go tonic clonic, you have the chance of the least harm. the floor is best (nicer if it's carpet) as you can't fall off anything. if not, the very middle of a good sized bed is better than anything else, such as a couch or chair. lay on your side and make sure your head is in a safe position (more chance of biting your tongue if you're facing up).

i'm hoping the depa helps you with them somewhat, those fear partials are pure hell after having so many i can certainly say i want to have the surgery more to get rid of those than the t.c.'s.

 

[picklenose]

i'm hoping the depa helps you with them somewhat, those fear partials are pure hell after having so many i can certainly say i want to have the surgery more to get rid of those than the t.c.'s.

Well, I started taking Depakote when I was about 17 and it worked extremely well until sometime in 2005. The fear episodes were very rare during those years and TCs were nonexistent unless I forgot to take the Depakote (Which did happen a few times but not many).

Then in 2005, something just changed. I don't know what but when I started having seizures again, it took me by surprise. I suppose I was in a bit of denial the first few times it happened. I thought maybe I messed up my med schedule or something and just couldn't remember doing it.

But it has continued in the years after. I haven't been having as many seizures as I would if I wasn't taking anything and they haven't been nearly as severe as they would be but it is still devastating to have that level of seizure control and just inexplicably lose it. And especially the fact that almost all of the seizures I've had were either when I was falling asleep or was sleeping. That's the time when you're most vulnerable and never see it coming. It makes me dread going to sleep.

Anyway. Do you have the jerks too or just the fear episodes? Like I said. Sometimes it's kind of like a hiccup or a gasp (I'm not actually aware enough of them to have a perfect description but I kind of remember bits and pieces). Sometimes my arms will jerk and/or I'll drop or throw things (not far).

I remember once when I was about 16, I was riding in a car with a friend and I kept having these while I was smoking a cigarette. I burned myself a few times. I ended up dropping it several times and burning parts of his car. And for some reason, it just didn't occur to me to simply get rid of the cigarette. I was kind of "stuck" mentally in the process of trying to maintain what I was doing. He had no idea at all what was happening. I'm guessing that whatever is observable from the POV of someone who is watching this happen is far more subtle than you might think. I can only really describe it from inside my own head. It's insanely difficult to describe this to someone who doesn't have epilepsy or hasn't experienced it.

 

[qtowngirl]

And especially the fact that almost all of the seizures I've had were either when I was falling asleep or was sleeping. That's the time when you're most vulnerable and never see it coming. It makes me dread going to sleep.

me as well, about 90 per cent or better are in that stage of 'just about asleep,' not aware but not out cold yet either. i talked to my doc about nocturnal E and she said for it to be nocturnal it's only when you're in a sleep stage and no other time. alas, no label for me.

Do you have the jerks too or just the fear episodes?

no jerks, i go very still. it's always been the fear, sort of mental paralyzation of terror, which just naturally makes my body go still as well.

I'm guessing that whatever is observable from the POV of someone who is watching this happen is far more subtle than you might think. I can only really describe it from inside my own head. It's insanely difficult to describe this to someone who doesn't have epilepsy or hasn't experienced it.

it's pretty much impossible for anyone to understand, regardless of how you try to describe it. frustrating. all anyone who cares can do is express sympathy, which is all they ever do. actually, let me back up for a sec, they can ALSO put in the effort to read and try to educate themselves on what epilepsy is about, there's endless research, but i've learned that just doesn't happen, even a spouse. again, frustrating.
mine started as a teen too, and it was so easy to hide so i did. my best friend knew tho and because i explained what to expect, she would pick up on it. after long enough however i learned how to have them in front of anyone, parents even, and they wouldn't have a clue.

 

[Katiered]

I get this fear, and almost distrust. I get this feeling that I don't know people and places that I logically know I do. I get this feeling in my stomach that I need to leave or that there's something wrong or unsafe.. Just that extreme unsettling feeling, but like picklenose said, I feel stuck. I just go on auto pilot and carry on with what I'm doing like I don't have the power to break myself out of what I'm doing. It's the oddest feeling. I'm thankful for the times I can say something early enough in the aura that my boyfriend will get me out of the grocery store or where ever, but it doesn't seem to matter where I am, the fear and suffocation feeling never goes away until a few minutes after.

 

[picklenose]

I get this fear, and almost distrust. I get this feeling that I don't know people and places that I logically know I do. I get this feeling in my stomach that I need to leave or that there's something wrong or unsafe.

I don't think what I feel is distrust or anything. I still trust the people I know and like. Though I might be really embarrassed because I don't like to be in the spotlight and it makes me feel really strange for someone to see me like that.

But I do get the weird feeling in my stomach. I don't know if everyone knows this feeling or not but it's the exact same feeling I get when I ride a roller coaster. On the drop, I get the worst feeling in my stomach. That's the same feeling I get when I have these episodes. Like the bottom dropped out of the world and I'm just falling.

The only good thing about it is that one episode usually only lasts maybe a few seconds. Though, I guess I probably do feel kind of strange for a couple of minutes. But the repetitive nature of it and not knowing how many episodes I'll have once they start, the fuzzy, dizzy confusion and whether or not they'll progress to a TC just fills me with so much dread.

 

[JustAnotherName]

I get this fear, and almost distrust. I get this feeling that I don't know people and places that I logically know I do. I get this feeling in my stomach that I need to leave or that there's something wrong or unsafe.. Just that extreme unsettling feeling, but like picklenose said, I feel stuck. I just go on auto pilot and carry on with what I'm doing like I don't have the power to break myself out of what I'm doing. It's the oddest feeling. I'm thankful for the times I can say something early enough in the aura that my boyfriend will get me out of the grocery store or where ever, but it doesn't seem to matter where I am, the fear and suffocation feeling never goes away until a few minutes after.

This is exactly how mine are these days, it seems. It's weird because every time I've had a complex partial or tonic-clonic, it has always started with a visual hallucination (flashes, blobs) and then progressed to extreme fear before I lose consciousness.

However, lately I feel random bouts of just extreme anxiety suddenly. It can be anywhere. I can be in the middle of shopping, in the car, anywhere. It's similar to how you've described it. I feel the absolute need to leave where I am and get to a safe place, but another part of me is saying, "No, you don't want to make a scene." I usually end up going to be alone to ride it out. It only lasts a couple of minutes, max.

I am on generic Keppra 500mg twice a day.

It doesn't happen too often, and anyone I've mentioned it to has said they didn't even notice anything was wrong. Part of me isn't sure if it's just plain anxiety or a S/P. I'm still working on getting with a new neurologist since I moved home after university, but I'm afraid they're just going to tell me I'm overly anxious or something.

 

[SimplePartialGal]

That feeling like a roller coaster is a good comparison. It is like going downhill on a big roller coaster. That feeling you get would stay through the entire seizure with me (along with confusion, deja vu, headaches etc). Here is another comparision. You know when someone comes from behind you in a joking manner and says "Boo" and catches you off guard? That feeing is also a way to decribe it.

 

[SimplePartialGal]

I am not having seizures anymore (free 15+ years with meds still). I haven't looked onto the temporal lobe part but it interests me. I got on the forum because I never had closure or knew anyone that had seizues like me. I see I am not alone. I suffered a long time with no diagnosis and I still think about that. The diagosis of simple partials alway seemed vague to me.

 

[AngelwithDentedHalo]

Everyday I think about if I'll have a seizure, especially when I'm out alone somewhere and far from home. I always think that if something happens, will someone be there to help or be somewhere and no one is around. I feel auras every once in awhile and luckily it hasn't developed into anything past that but the fact I have them says to me that I could have a seizure or my brain is at risk for one.

 

[seizingbeauty]

Wow once again I am really glad that I am a memeber here. I have T/C's but in the last 3 years I have started to experiance episodes that I described as feeling like I was 4 yrs old and afraid of everything. My neuro is convienced that they are panic attacks but like others here I realize the difference. Its nice to know that I am not alone in this!

 

[AngelwithDentedHalo]

I had a Grand Mal seizure over two years ago and have had aura's off and on since then and probably before. I had a brain bleed and Neurologist thinks that's why I had the seizure but I don't have a definite diagnosis and I may never have unless I had another seizure and it can be frustrating. You almost wish for one so the doctor can finally diagnose me.