Aura: Pre Ictal Fear. Any others Experience?

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

Submitted by classy1g on Wed, 2005-04-13 - 05:25

Gretchen,I'm not familiar with the terms, but I too get that feeling of dread. My first major seizure was about 5 years ago, and my doctor dismissed it as an adverse reaction to meds I was taking. I was at the kitchen table with my hub and son, who then was 8, and we were laughing really hard about something. The next thing I knew, my peripheal vision went kapoot, I was in a tunnel, and hyperventilating. I felt my body trembling out of control, my legs were so sore, and I was desperately trying not to fall off of the chair. I lost my vision during this sz, and all my senses. The panic was unbelievable. In my mind, or what was left of it, I sensed, that if someone didn't help me, I was going to die. I was trying desperately inside to stop the sz...to reach the end of the tunnel. I was aware that my body was racking over and over with strong convulsions, and I couldn't stop it. I also remember crying inside...scared that I would die right there in my chair, infront of my son...and it terrified me beyond words! My son knew something was wrong, and reached out to hug me...I don't know how or why, but this did settle me down, and I shortly thereafter came out of the sz. sobbing. I asked what I did, or said...and my husband said, I was shaking and jerking uncontrollably, and my eyes were rolling back in my head. He didn't know what to do, cause it happened so fast.I have had other seizres of late, that start with the loss of peripheal vision. I guess this is my aura? I know I'm going to sz when I get this feeling. I also get the tingling in my arms, and hands prior. Then the dread comes over me, like a hot flash. It is excruciating...and I simply hate it! I always feel like I'm going to die if I don't stop the sz, but we know we have no control over them. I just never know the intensity of the sz with this sense of doom & gloom, until it's over. But it is a horrible, horrible feeling. It leaves me depressed and very scared.Someone mentioned in this thread about sounds that trigger szs? I just had an MRI done yesterday, and while in the 'tube'..or 'tunnel'...*shudders*...one particular sound or groups of sounds, caused me to jirk. Laying there, I kept thinking...OMG...here it comes again...stop it...stop this sound, before I do go into a full sz...will they be able to pull me out of this medical bondage apparatus?? Again, this feeling of doom and gloom rushed over me. Lucky for me tho'...(I guess lucky!), I had an asthma attack and they had to pull me out. I have to go back in today to complete the contrast part of it, which shouldn't be so bad...only 10-15 mins. I also noticed, I was very headachy after the MRI..probably from the sound pounding into my skull! All I can say, is if your not claustophobic, before going into an MRI, you probably will be when it's all over!I know it's hard but what I try to do when I'm attacked with doom and gloom is keep reminding myself I'll be ok, this too shall pass...and just ride it out. I don't know if this is helpful or not, but something I felt compulsed to contribute.Keep safe...classy1

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

Submitted by Gretchen on Wed, 2005-04-13 - 16:17

Gosh Classy - am I impressed your 8 year old had the maturity to hug you! I have 11 children, GREAT children who are now all wonderful adults but I do wonder about all but two, one is now an RN (no surprise), the other a children's therapist, and if any of the rest of them would have had the courage, maturity - to hug me? Oh gosh that helps. Kudos to your wonderful son and hey do me a favor? Would you tell him I said that? I am mucho bueno impressed by him and also (wink) who raised him. Must be you huh?You have asthma too? I think Spiz does also. I've found too many people who have asthma and epilepsy and while I am certainly NOT saying there is a correlation - is there a correlation? Both of my "conditions" are inherited. I was just upgraded to intractable asthma instead of periodic. Whatever. Throw it at me guys. I'm an epileptic, IOW I'm tough, didn't ya hear?HAHA - the "sound of an MRI?!!!!! YIKES! I compare it to American Indian tom toms. The first time I heard/felt it, and I'm an RN so I feel I have a right to say this, the terrific understatements of some medical people! I was told - now you're going to hear a "little" bit of "sound" but it goes away, is "normal" (my A**) doesn't last longer than 7 minutes (yeah if it isn't happening to them in a tube that barely fits their body) and again, it's totally normal (this is "normal"?). NO IT'S NOT! Never in my life has anyone beat DRUMS into my ears, total body, like an MRI. Here's what I've learned to do by a compassionate MRI tech. She said that ALL MRIs have a "panic button". It's a ....darn't, lost the word. You squeeze it and suction things out? Type dealy. If you're not given it - ask for it. I have in many places and not a one hasn't had it, they just aren't offered. It comes with the machine. What it does is shoot the bench out of the tube of the MRI you're laying on (uncomfortably laying on it, if not all else was bad enough) and for me? I've used it once when I had end stage diarrhea, but just knowing I CAN get out of there? Has helped me get hold of that claustrophobic feeling. Also she said to have your face or at least eyes covered because the tantalizing ummm...DANG IT! Word find, word find? I'll say URGE to open your eyes is overwhelming and when you do? What you see is a "ceiling" that is about 1/4 mm from your face. That is - unnerving. So now I have an MRI and I ask for the - I GOT IT - "bulb" and a wash rag over my face (dry) and after many MRIs? I get through that extreme claustrophobia relatively unscathed. However the tom tom's LOUD sound? Get my jerks in rythym with them? Make my jerks want to join in? Anyway get my jerks to going. I was told they have to do the tom tom's thing but good grief. Is this an endurance thing or what? I had a real young, blond, breathy speaking (I'm trying to discuss the "airhead blond" type person and I can too say that because I'm blond - hopefully not an air head) type air head appearing woman who said to me - don't you worry about the beating sounds and here's what we'll do..... SOUNDS? Try whole body beating! Yeah, well my jerks get very active and THEN the speaker says Mrs. ___, can you hold very still? NO! But the bulb and covering my eyes helps immensely. At least for me. I make no promises to others though.There are also now "open MRIs". These were originally developed for large people but can be used by anyone. I've not had one so I can't comment about them much. I'm from KC and last time I lived there, 6.5 years ago? There were only 3, still there WERE 3. They are not a tube. There is an open side I think but anyway, you're not stuffed into a casing like a sausage. If the claustraphobia is too great, as it is for my husband, in a regular MRI, ask where the closest open MRI is and if there isn't one in your town? Start calling hospitals in the closest big city. I'll betcha many employees will know where the nearest one is - at least radiology will. My husb isn't a real big man but he has very broad shoulders that simply do not fit in a regular MRI. The open MRI type made it so - he COULD have an MRI. Another hint? You can in most places ask for premedication, usually Versed or Valium to help relax you and if I didn't have the aids mentioned above that do help me? I'd definitely ask for premedication to help me through it. In fact I do ask, and receive, when I go to the dentist because I am very dental phobic. Before I was diagnosed, I'm in my mid 50's and this started in my teens, a goodly period of time, I went from one to another doctor or psychiatrist over the years pleading, begging, asking - can you help me? I have like - anxiety attacks or something? I'd even say - I feel like I'm loosing my mind, disconnected from reality to this world, your world. (Understanding nod of the "head") Now why wasn't a thorough history taken? Because if one was, surely one of the psychiatrists would have seen - I have epilepsy. Anyway SSRI's then came on the scene after taking those awful , horrid old time anti depressant/anti anxietals they use to use in barrel amounts with horrid side effects, to stop my "anxiety attacks", which the old time medicines either didn't or I was so sedated if I had one I didn't know it! There is ONE SSRI that is specifically targeted for "social stress and/or agoraphobia ". I DO NOT HAVE SOCIAL STRESS. It is not an anxiety attack! The one I was told of the SSRI's specifically targeted for "anxiety attacks" is Paxil. I have no doubt this is an excellent drug for those who need it but it just so happens it didn't target my problem. Dutifully I took it for 2 months or so. I continued having "anxiety attacks" but there was one "attack" that to me was very telling these were not anxiety attacks. How do you wake up in the middle of the night from a dead sleep with a "social stressed" anxiety attack? I called this "doctor" and told him about that? His response was, I must have had one heck of a nightmare spurring an anxiety attack. COME ON! What's that saying? If you can't say something nice say nothing at all? Well what about if you can't say something intelligent keep your mouth shut? That was the last time, until I got TLE's, that I tried to get any help. I was convinced, I had hellacious anxiety attacks that were untreatable and that is one rotten feeling too. Some "doctors (I was going to say neuro's but don't want to insult) remind me of the saying: boys and their toys? Doctors and their pills and if the pills don't work? You're out of luck. Whatever happened to keep on digging at the problem until it's appropriately diagnosed anyway? Is that passe'? Thankfully they're not all like that though. Anyway, it's been selfishly rewarding to me I'm not the only one, but on the other hand, I hate it any of us have this because? Tis really awful to experience this. I've gone into public bathroom stalls, sat on the stool in a teetering squat on top of the stool (with no lid), gripping my legs in a squat position (precariously), closed my eyes tight, shaking and sweating all over while I'm freezing cold, and held on for the ride. To date I do not know of any other syndrome where people have to do that. I do not like "auras" or "simple partials". Whaz so "simple" about Pre ictal fear?Anyway thanks for the contributions. Now I don't feel AS crazy as I did - before.Gretchen

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

Submitted by pongosmommy on Wed, 2005-04-13 - 18:40

Ever get that feeling when you lay your head down to go to sleep that you will not ever wake up again? I tried to explain this feeling I get sometimes to my hubby and he looked at me as if I WAS CRAZY. He said No he doesn't. Well I have had the feeling like I am going to die...many, many times. In fact I have "seen' him waking up to me no longer alive...Yeah of course it wasn't real...but it sure seemed to be. ok, is this more of this 'Simple Partials"? ... or is it just me and depression is trying to rear it's UGLY head again?Ummm, I didn't like the feelings I had when I took Paxil, and Zoloft wasn't much better. Now prozac...I thought that one worked just fine...my Doc disagreed and thought I had anger issues made worse by the meds. Hello, I do not think I am angry, pissed off at times, but I think I am a happy person.Oh and I REALLY liked Xanax, pop one of those and nothing seemed to bother me. I worked in Customer service at a Very Large Utility and I would talk to the most irate people you could imagine. They used to call me the worst names and threaten me all the time and it Didn't bother me in the least bit...when I took a Xanax.Thank goodness I am not claustrophobic...I have been in many MRI's...although no one has ever used the contrast for me. Someone once said that they will not find the cause of my troubles until they do the Contrast...and that the trouble is VERY DEEP inside my brain...but getting an MD to listen is another story.