feelings of terror with seizures

Feelings of Terror I wasn't

Submitted by gretchen1 on Tue, 2006-04-25 - 01:19

Feelings of Terror I wasn't sure if you're referring to feelings of terror as an aura prior to a sz, or during. I think it was around the second year after I was diagnosed, 3x in one day, I very suddenly had a mega anxiety attack. Next I had a drop. The terror I felt right before was an aura. The second time it happened I called my neurologist who said that I was experiencing a specific type of aura called "preictal fear".This aura can precede any sz and I find it nearly devastating. Last year I started a thread about preictal fear when, for whatever epilepsy's reason I was having this daily and that fools around with my mental health. There were some excellent posts on it. Perhaps you can find that. I have had anxiety attacks but preictal fear is ridiculous. Preictal meaning before the seizure. I don't get these regularly. More like you I tend to get this aura,or simple partial sz, in groupings then I can go for months without experiencing it. Back then I did find "preictal fear" on Google too. I don't know if this applies directly but maybe indirectly. I also get a simple partial seizure called a Jamais Vu. I haven't read the definition on this site but the symptoms I have my epileptologist has said are typical. Two of those symptoms are I am totally conscious and I am at all times so terrified I can barely move, sometimes it's hard to talk. The primary symptom of a Jamais VU is that the familiar becomes unknown or unfamiliar.An example of how these symptoms can all work against each other? I was conscious, I knew I had to make an important phone call,was about to do that when a Jamais Vu appeared. I was seized (pardon pun) with terror that I don't know how to describe. I knew I made phone calls through my phone but I also knew that my phone went into my computer. I KNEW that was the key component but I could not remember how all that worked. I think that terror that never lets up hinders cognition or maybe it's just part of a Jamais Vu but certainly being chronically and ever increasingly terrified and frustrated doesn't aid my cognition. So with the phone receiver at my ear,and trying to dial for a long time on my computer key pad, with no results of course, my terror grew. This Jamais Vu lasted forever because it just happend to go status. Natch. Finally I went outside to see if anyone could help me. No one was outside and when I turned around to enter my house? I didn't know which one it was. The terror increased. I'm using this paragraph about Jamais Vu's to demonstrate that high terror can be a part of a seizure, very unfortunately. I'm totally unable to diagnose tho if that is what is happening to you. However I'll state my personal philosophy and that is to me seizures can and often do anything they want to do to you. I don't know how long you've had epilepsy. I have both TLEs and generalized plus I sz quite a bit. I was diagnosed over 7 years ago. Many members of my family also have epilepsy and we of course compare notes. Some of them have had it for a very long time, one member was diagnosed a year ago. My observation with all of us is, and this is only my opinion/experience, it is so darn weird to sz. I rarely read anyone posting that but I mean - isn't it? I say that because I have read posts for years, plus my own experiences and my family's and at some point I realized we are all trying to make seizures make sense. A sneeze makes sense. Blushing, sweating, many bodily things but seizures that ambush you in a microsecond or make you feel awfully weird? No, that will never quite square with me. I can't speak for anyone here but no matter how many seizures I have, no matter how much of the physiology I understand about them,I still think this is one nutty thing to be afflicted with and it will not make sense, because it's so darn bizarre. The member of my family who was recently diagnosed had primarily CPs. Currently,fingers crossed she seems under control. Still many times peppered in our conversation she talks about her fear of ever having another CP. I have CPs and don't have any terror that I can remember but her terror is heart breaking to me. Her CP experiences she feels she can remember very long tableux's that are mechanically and otherwise impossible, which she knows, yet they are so real to hershe can't shake the "experience" plus she always experiences the same things. She knows what's coming and she dreads them. She comes out of them sweating profusely, crying, and even as a young adult wants to crawl into my lap and cry then sleep. I don't have terror in my nocturnal CPs that I remember now. I think my current theme is "anguish" from familial reports. But when I first started having them I was extremely, effectively (unfortunately) combative because I had what I call very quick "snapshots" of things that terrorized me. That was extremely hard me and on those around me. I do think I've had so many that I know now they do end, I'm not nuts, I'm never teased no matter what nutty things I've done which isn't entirely true but sounds so lovely, and somehow once it's over I forget about it. Easily said, I got used to them I have had so many and regularly but my daughter has not had that "privilege" and she remains in terror. For you waiting MONTHS for the next groupings of terror? Good grief give yourself a break. That's torture itself I'd think. In a perverse way then I think it is easier for me than my daughter that I sz so much. I had to get used to sz'ing and I'm not controlled. She has not had that time to get used to them before she became controlled and in that context? She fears break throughs and I don't because I know I will sz in some way every day. I think you've gotten some good suggestions and all I'm trying to offer is perspective. I too take clonipin BTW. If I don't take it I'd jerk myself to the floor and I swear I'd twitch my muscles off of my bones. I take a high dose too and I still jerk and twitch. If I am tired it makes me sleepy, otherwise it doesn't. Clonipin is often used in epilepsy because it has a long half life I'm told as compared to other benzodiazepans ie.e. Valium,Xanax,Ativan etc. {Ed. note: a pharmacist told me there is a drive by some physicians to get Xanax off the market. It's extremely addictive and it seems once you're addicted to it, you will always be. The primary use for Xanax is now considered always short term but addiction happens very rapidly. When I first got E my internist put me on Xanax. With Clonipin I take it, I don't notice it hitting or disappearing. With Xanax I felt this great little "hit" of fuzzy relaxation for about 4 hours and then I'd have a wash of anxiety. IOW wanting another. Thus the highly addictive quality. That was a human interest insert.} I hope what I am giving you is some perspective that you're not alone in your symptoms and terror can be a part of a sz's symptoms or a part of your adjustment to seizures or both. This post I doubt has insightful suggestions or helpful info for you and maybe I've missed your topic entirely, I hope not. I hope too it might help you realize you are not crazy, atypical, your grip is steady, you are not unusual in our world - you're experiencing a symptom of a sz many of us do but the symptom of terror can be very frightening. I admit I do get irritated when once in a very long while I will read a post where someone states that epilepsy has been a wonderful thing for them because it made them SUCH a better person. Terror/anxiety/panic has not yet made me such a fun gal! I can find much better routes to become a better person. I do not like this dang thing to be white washed, sanitized because I know when I've read some of those posts either (1) they don't experience what I do OR (2) I've thought okay I've improved some things about myself. I can stand loneliness, poverty, my pain threshhold is surely higher from so many injuries, I know now I won't loose my mind and I can't go nuts if I've gotten thru all of this and then the "acceptance" of loosing my 28 year old career I adored. IOW acceptance of things before unimaginable are now in my grasp like it never was before but I mean -PUL-LEEZE. This is one hard way to get - there! I always write long posts, eeekksss, sorry. Thankfully for all, specifically for some I know (sorry that was snotty), I rarely post any more. Anyway. In conclusion I will end with this: When my children were young they would wail about something in their lives not being fair. Wisely I'd soothe them and explain many times, life isn't always fair. NOW I got this thing and I often want to scream - THIS IS SO NOT FAIR. The fact is? It's not plus I do wail that at times. Terror is not just unfair, I think it's obscene to experience if that helps at all. Hang in there. Gretchen