Aura: Pre Ictal Fear. Any others Experience?

CDC funded page

Not a CDC funded Page

My epilepsy started out with only generalized seizures as compared to TLE's or temporal lobe epilepsy. I had a head injury from szing, injuring both sides of my head around my temporal lobes as well on my right frontal lobe. I've had an excellent recovery from all of that but was left with generalized and TLE seizures from those injuries. I mention this to state I was plunged into the world of simple partials or auras with TLEs. Before that happened I used to think, but not say, that people who "only" had simples were "lucky" but quickly changed my opinion once I started experiencing the bizarre world of TLE auras. The plunge has not been a fun swimming experience. I've read a lot of people's experiences with auras and even though I have intractable and very active epilepsy I haven't had many of the wretched sounding auras many describe. But I do have this one that actually has a name - Pre Ictal Fear or Before the seizure fear. It is SO unnerving to me...well where to go from that statement? It's unnerving but also very rarel occurrening for me, or was. Since last Friday, 4 days ago I've been plagued with the occurrence of pre ictal fear that sometimes hangs around for awhile and dissipates and sometimes leads into a secondized sz or convulsive sz. That too is unnerving - which way is this ball going to bounce.This is the way my pre ictal fear aura presents itself and from what I've read my experience is "typical" but reading a clinical description is not like reading the experiences of those who have suffered through it and that is what I'd like to know about. I've been having this blasted thing hitting me repetitively like I'm in the cross hairs of it since last Friday and it's getting very old, very unnerving, and today I'm very exhausted emotionally and physically from it. My doctor prescribed sedative type drugs which helped, then didn't, increased those, which helped, now today aren't helping. I keep thinking this siege is over, then I get another pre ictal fear aura. Anyway last Friday morning I was typing an email on my computer about something mundane, nothing else was going on to provoke this and as fast as like a lightening strike - I experienced the feeling of adrenaline rushing fear or a very sudden and strong flight or fight feeling. There's another underlying additional feeling to it too, maybe it's a feeling of impending doom. I'm not sure. I'd like to know too but I'm so overwhelmed by this inappropriately occurring feeling of panic and fear, I can't concentrate on anything else. I'm consumed by it but I am for awhile at least totally conscious, cognitively intact, able to move, but the first time it hit on Friday it continued, didn't go into a seizure then. I rarely call my doctor to report any type of sz activity any more. I dont because for just me I have emergency medicine at home orally and in injectable form that usually takes care of clustering, averts other dangerous sz activities and also because frankly I have a lot of sz activity and I'd be on the phone constantly. I've accepted sz events and to me it's just a part of my life, as opposed to being my life. There's no point to calling my doctor unless I'm clustering out of control and can't stop it or something similar. But this was so uncomfortable, I felt certain I was heading for a serious sz, very certain which increased this severe fear feeling and I was alone which also increased the feeling. I called my doctor asking for help/advice. Her nurse noted I was having difficulty talking and I noticed my cognition was intact I think but extremely slow. I would guess by the time I made that call it had lasted maybe 1/2 hour, a guess. The best way I can describe fight or flight for me are the few times in my life I have come within a hair of being in an auto accident at high rates of speed, once a semi truck jumped the medium strip and was coming straight at me and I had the fight or flight feeling then. IOW situations had all the makings of a serious auto accident sure to occur, but I escaped by a hair and after I did escape being hit, realizing I was safe, a gigantic shaking feeling of fear would overwhelm me, a huge adrenaline feeling surge, leaving me feeling shakey, heart pounding, immobilized for a few minutes. That's as close as I can describe for me fight or flight or the feelings of pre ictal fear aura.I'd like to know if anyone reading this post has experienced this coming straight out of the blue, as an aura. If you have, can you share your experiences? For instance how long it lasts, if you've had this do you tend to cluster with it as I'm doing now, do you have it infrequent in occurrence like me, does it usually lead to a secondized seizure, how do you handle this horrible feeling, or anything anyone would want to share.The first time I experienced this was about 4 years ago. I had it 3 times in one day. I would guess the aura lasted a few minutes and later I found myself on the floor. The aura had progressed into a drop sz. Then I went about 1.5 years not experiencing it again but I swear of all the epileptic "events" I've experienced this is one of the ones I remember distinctly each time I've had it and dread having another but right now I'm still having them multiple times a day and it's really worn me out. I've noticed too that although I've been posting in the last few days? I'm leaving words out, making other typing errors yet I feel cognitively intact but apparently my "record is skipping". All to say I feel cognitively intact but am I? That little personal internal question isn't pleasant either. This has also left me with a pounding migraine of which, referring to the thread I started about wanting a Purple Heart for the physical pain of having epilepsy, I was so very fortunate to receive ONE pill for this pounding relentless migraine and it was very hard for me to not tell my doctor where she could plant her one pill - but I'm getting nasty after 4 days of this and one pill is more than zero pills. But I got that ONE pill last night and this is this morning and my headache is back. I'm feeling nasty physically and in my temperament.Has anyone experienced this and if so, could you share with me your experiences? Thank you.Gretchen

Comments

RE: Aura: Pre Ictal Fear. Any others Experience?

Submitted by spiz on Mon, 2005-03-14 - 21:17

Gretchen, I have TLE. When this fear hits me when I'm walking or standing, it totally immobilizes me and I can't move again until it passes. It's an overpowering fear that makes me feel like ice water is flowing in my veins and the hair on the back of my neck is standing up. My heart beats so hard and the feeling in my chest and head is the feeling you get when you hyper-ventilate. It's worse when I'm laying down for some reason. The fear and dread are so pronounced that it's totally unreal. Afterwards my chest and head hurt so bad and it takes me a long time to feel 'with it'. It's an absolute overpowering fear.Afterwards I can have anything from slight jerks,which are probably noticed only by me,to T/C's. You know, I've got to say this. Being the only epileptic I knew and being surrounded by 'normal' people, it has been so hard all these years to go through all these extras that aren't seen on the outside where the others in my life could 'see' them. How do you explain to them without them sending the men in the white coats to get you? I am still in total awe that there are people that experience the same things I do. I'm not crazy and after 30 years of wondering, it's made for a very tired mind. Thank all of you so much for helping to put all of these things to rest for me. Ya'll don't have any idea what ya'll have done for me.~Thank you~-Spiz

RE: RE: Aura: Pre Ictal Fear. Any others Experience?

Submitted by Gretchen on Mon, 2005-03-14 - 22:54

Ahh.. Spiz. I too have lived my entire life thinking I was two people. the one every one saw. And? One I kept hidden, not knowing I had epilepsy, always feeling I had to hide portions of myself, being frightened of myself at times, fearing I'd goof up, people would see I was goofy, maybe seriously mentally ill, I didn't know but I had a fear of being locked up for years, and what gets me is? My mother had me diagnosed, actually treated when I was 7 years for 10 months and never told me? I had epilepsy. I was placed on phenobarbitol for those 10 months and I even to this day remember all those weird things going away but I was so tired once I was medicated, yet my mother said I was taking the pills for "hyperkinicity" aka ADHD and I felt anything but hyperactive. I primarily grew up on a very large farm. We all had a lot of chores to do and I still can remember bone wracking sleepiness, but still had to do my chores. YOU said the word I couldn't find - dread. This horrible feeling of dread for partially unknown reasons or at least unknown at first, later I start knowing, just knowing I'm going to have a serious sz, then that horrible WAITING for it. That was impossible for me to sort out because for one I'm so overwhelmed with fear and panic my hands are shaking, apparently you feel that too and while I hate that for you, you're such a gentle soul, it's comforting to me to hear your experience of this is nearly identical to mine. When I read your word "dread" I realized that is the feeling I couldn't identify that goes with it. I feel that at any minute some unknown something awful is about to happen but how do you say that to a "normal"? The first question asked is - what do you fear is going to happen? I don't know what. Something. Just - something. Interesting to me too? I feel much worse laying down. That was fascinating to me you do also. I think I hyperventilate too because my lips and fingertips get numb and buzzy, or maybe that's another aura or part of it but it feels like when I was in very competitive volleyball years ago I had problems hyperventilating right before we'd take the court. My lips and fingertips buzzed because I was hyperventilating with stress, probably some fear too.I was told to lay down, take medicine, call back in 1/2 hour and this is SO dumb - call if I have sz activity. Well? I'd sure like to know who can make a phone call when they're unconcious?! I tried to be compliant, lay down, and it got much worse. Finally I propped up pillows on the couch, semi reclined and continually thought - okay go away, go away, almost like a chant. Doesn't work. I have taken two courses of intensive biofeedback, really concentrated on that until my hands must have reached a temp of 120 F. NOTHING worked. I HATE THIS. Right now? I'm getting jumpy waiting for it to occur again. I'm so sorry you've experienced this too but thank you for sharing. It helped me a great deal. Gretchen

RE: RE: RE: Aura: Pre Ictal Fear. Any others Experience?

Submitted by spiz on Mon, 2005-03-14 - 23:41

Gretchen, You mentioned the good ol telephone so I have to add this. The telephone and I don't get along at all. The ring goes through my head and every nerve in my body and to talk on the phone gives me a headache. I keep the ringer and ear volume on low which helps some but not much. But to use a phone after a seizure? Nope! I'm totally confused,goofy and usually jerky. So if I'm not throwing the phone, I'm dropping it or I can't remember what I dialed and have to start over again and again. One day the phone rang after a seizure and I hadn't had enough time to get myself together. I kept saying, "Hello? Hello?" and it kept ringing. It finally stopped and I put my hand in my lap still holding the 'phone'. When the cotton cleared and I became aware that I was sitting there having an unintended staring contest with the wall, I looked down and.......has anyone else ever tried to answer the remote control?!-Spiz