Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

Aura: Pre Ictal Fear. Any others Experience?

Thu, 04/14/2005 - 21:32
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: RE: RE: RE: Aura: Pre Ictal Fear. Any others Experienc

Submitted by spiz on Thu, 2005-04-14 - 20:02

Dayna,

   Are you aware you are sleeping and/or dreaming at the time? If not they sound like what my doctor says are night terrors. I have them. The doctor says I'm asleep and dreaming and I say I'm awake and they're real. It's happening to me so I've decided I get to be right.

  Anyway, the one that likes me the best is I'm AWAKE and laying on the couch and I hear someone come in the back door. My husband is asleep upstairs so I know it's not him. I 'know' it's a man and I know that when he reaches the couch he's going to kill me. I can hear his footsteps, hear his breathing. I know he knows I'm on the couch and I cannot scream. I can't move. I'm not dreaming, this is happening and it feels like my heart is going to explode. The fear is totally choking me.He's in the room with me, his breathing is louder. I can finally squeeze my eyes shut. When I open them, he's gone.

    My doctor just thinks he's so absolutely cute because I can't explain why this happens over and over again if it's not a dream. There's a total weirdo running around that enjoys scaring the poopoo out of me,ok?

  The phone just rang,I have jumped through the ceiling and am now typing with my toes. Ok,tadbit exag. I did jump out of my skin though. Excuse me while I go put it back on. -Smiles-

-Spiz

Dayna,

   Are you aware you are sleeping and/or dreaming at the time? If not they sound like what my doctor says are night terrors. I have them. The doctor says I'm asleep and dreaming and I say I'm awake and they're real. It's happening to me so I've decided I get to be right.

  Anyway, the one that likes me the best is I'm AWAKE and laying on the couch and I hear someone come in the back door. My husband is asleep upstairs so I know it's not him. I 'know' it's a man and I know that when he reaches the couch he's going to kill me. I can hear his footsteps, hear his breathing. I know he knows I'm on the couch and I cannot scream. I can't move. I'm not dreaming, this is happening and it feels like my heart is going to explode. The fear is totally choking me.He's in the room with me, his breathing is louder. I can finally squeeze my eyes shut. When I open them, he's gone.

    My doctor just thinks he's so absolutely cute because I can't explain why this happens over and over again if it's not a dream. There's a total weirdo running around that enjoys scaring the poopoo out of me,ok?

  The phone just rang,I have jumped through the ceiling and am now typing with my toes. Ok,tadbit exag. I did jump out of my skin though. Excuse me while I go put it back on. -Smiles-

-Spiz

RE: RE: RE: RE: RE: RE: Aura: Pre Ictal Fear. Any others Exper

Submitted by pongosmommy on Thu, 2005-04-14 - 21:32
Honey I am TOTALLY AWAKE when it happens. In fact it hits me just after I have found my comfy spot, you know squishy pillow in perfect position, between me & hubby. Anyway, I close my eyes and then it starts, that flush feeling and then the OMG I can't breathe, my chest kinda feels like it just got squeezed and then I feel a rush in my head, Then I say a quick prayer...just in case it really is going to happen... then I feel a peaceful feeling and fall asleep.Ohh Night Terrors are so much fun! Not!! Yeah that is what they think my nighttime adventures may be related to. You see Heather says I sit up in the bed and Scream really loud! Scare the pants right off her. That is why she pushed me so hard to get me to stop, she says my eyes are open, but I don't respond. But I don't remember anything, and she says it just happens once in a while.Hey maybe your visitor is looking for me? You know how much we look alike. LOL We had a guy break in when I was 16 and he stood in the doorway of my bedroom and was watching me. Scared the S@#$ outta me. We know that was real, he stole my purse and we found the contents all over the neighborhood. Normally my purse was right next to me, but that night I had it right by the door. Hey maybe THAT is my tramatic event causing me to have the seizures.hey don't be scared, you know it is just uncle George coming in to say Hi, so don't be afraid anymore OK? If you get too scared...Hop on that plane and you can come stay with me...I will protect you from those nasty Ghosts. Ummm keep the door locked just in case.Have you ever dreamt you were in hell? Now THAT is scary. I have and let's just say I don't ever want to go there again. Although I can't figure out WHY they were playing volleyball. WEIRD.

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

Submitted by classy1g on Thu, 2005-04-14 - 07:42
Gretchen,Thank you! I most definitely will have my son read your thread. He is a wonderful boy, and I have better communication with him then with ny hub! I finished the MRI yesterday...the contrast part, and again found my body trembling to the rock rhythm that was provided at no extra cost!...lol I keep my eyes closed in the MRI, and I tend to tap my foot to the rock rhythm, something to divert my attention to the 'surroundings', or lack of!...lol So, I'll know more on Friday, if the tumor has grown or not.. :-( I'm more terrified of that, than of the EP. I was diagnosed with the pituitary tumor when I was 19, and I'm now 48. It layed dormant for many years, thank God! I had secondary ammenoreah, and was told a host of things from so-called doctors, till I finally found an endo who properly diagnosed me, and started me on meds. Then I had my daughter, and that seemed to straighten everything out. I have always had sharp pains in my left temporal, and on the right base of my skull. I just dismissed it as a 'headache'. Lately, these pain episodes have been lasting longer and longer, sometimes up to 30 seconds. They are blinding. Exrucitating...sometimes bringing tears to my eyes. And I have a high-pain threshold! I guess I'll know more on Friday.Keep safe...classy1

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.