feelings of terror with seizures

Re: Re: Re: feelings of terror with seizures

Submitted by gretchen1 on Tue, 2006-04-25 - 17:51

Hi Andy - Be sure and read Epi-Help's post. I think she was clarifying some things I posted, and glad she did and responding to this feeling you have described. I've written this post several times and I'm still not happy with how I'm putting this but I hope this makes some sense to you. When I first got epilepsy, and for several years, even considering myself a reasonably intelligent person, I could not get the distinction between auras and simple partials. I knew by then auras could manifest themselves in a lot of different ways and did with me but to me aura = forewarning of a more intense seizure to come. A simple partial that would start, then stop in a few I thought was a "little seizure". Annoying but certainly bearable and didn't interrupt my life that much. What I didn't get I finally understood was that seizures can secondize from a simple partial and when they do then often people call the simple partial an aura. An example many of us have is that we have a simple partial seizure but if it then secondizes or progresses into a more profound seizure, like a CP, but it can secondize into many different types of more profound seizures,most of say or think, first we had an "aura" which IS a simple partial sz. To me if I had a simple partial seizure that didn't secondize how could many people call these auras, or to me, forewarnings. I had my understanding of simple partials, auras messed up. Anyway I started a thread out of desperation because I was having very annoying feelings of having a deja vu off and on every minute of my life for 3 weeks. What I didn't understand at that time is that a deja vu is a manifestation of a simple partial and I was in this state of a seizure for way too long a period of time - I was in a red zone but it didn't feel like it. I continually thought, I'm having an aura, I know I'm about to have a "real seizure". People advised me strongly to call my neuro which I finally did. He did an EEG and I was spiking all over the place, much to my surprise. I told him I didn't know I was having a nearly constant simple partial seizure. I thought I was having a nearly constant warning or aura, which again remember can manifest itself in a lot of ways in all of us. I have had auras that I would characaterize as vague feelings of apprehension, for instance. After I had my, to me, surprising positive EEG? He medicated me to get rid of the deja vu but it didn't work. So he outfitted me with telemetry to get more information, sometimes also called an AEEG or ambulatory EEG. They wire you up, you go about your life, note any sz activity if you have any, and all the information goes into a little box you wear, for usually 24 hours, which is then analyzed. By doing telemetry they found out in one day I was in and out of a status simple partial seizure. That is dangerous. As I posted before, I think epilepsy can make you feel any old way it wants to but that does not mean how you're feeling is within parameters of safety. I read your blog and posts here and I hasten to say I do not have diagnostic abilities. However I would strongly suggest you call your neuro and be insistent about your feeling that you can predict having a seizure for a week, almost to the minute because frankly, I don't think that is within normal safe parameters. The question to me is what is your brain activity during these week long periods. It should be known, at least I think so. If I were you I'd like my neuro to do an EEG during one of these periods you have, see if you're spiking or having an abnormal EEG and/or compare it to EEGs you've had in the past. By definition, universally, seizures of any kind should not last longer than 5 minutes. If I were you? I would like my doctor to hook me up to telemetry too. This can give your doctor a lot of information and it just might demonstrate you're having unusual and possibly dangerous brain activity in these weeks that precede a "seizure". Or, hopefully it will demonstrate you're having no problems. I think your posting this is very valuable. The reason why is based upon my own experiences when I had several weeks of deja vu but was blowing it off, when in fact I was in a dangerous area of brain activity but didn't feel like it. As I've said seizures are so bizarre, manifest themselves in many ways, I do think it is easy because I've done it, to accept too many things that in fact are not within normal parameters. By experience I can guarantee you that none of us can diagnose ourselves either. So, do I think you can know for a week exactly when you're going to seize? Really? No, I think there is something else potentially going on. Or at least I feel you should find out if that's true. Status seizures, or a seizure lasting over 5 minutes, can threaten your life. I happen to be prone to these and I've had full resuscitation twice. That's coming way too close to the line for me. I don't take chances now. If I feel something in me is possibly outside the norm? I call my doctor. Better safe than sorry. Also I do sz a lot and I went through a several year period attempting in many ways to stop a sz I knew was coming because I had an aura. Sometimes I get what I call a "stuttering aura" or an aura that last seconds, goes away, comes back and keeps up that cycle and that is confusing, and for me makes me very alert, anxious. I've had two courses of intensive biofeedback and I felt that by using this I might be able to abort an aura or simple partial seizure from going further. I was so curious about this I tried it in a VEEG so they could see what my brain was doing. Twice I thought I did abort a seizure using deep relaxation. I found out I didn't. What my epileptologist told me was a seizure can be vizualized like a spiral. Once that spiral is set into motion, and if you can understand the physiology of neurons, synapses and brain chemicals? Sheer will can't stop that spiral once it's set into motion. Medication can intervene. One more thing. I have a lot of Atonic Drops. Notoriously Drops do not have any warning which I've found to be true. I'd have NO idea I was going to drop and suddenly be picking myself up off the floor but in the last year or so I was getting little warnings sometimes. For instance before they took out the bright script on chat? For several minutes when those bright script colors would start scrolling I'd start feeling sweaty, ill and then I'd "drop" and I did think wow - I'm finally having drop warnings. But I wasn't. Sometimes I'll now say "oh no"or "my head" or "I'm sick"or my husband says I'll put my hand on my forehead, get a blank stare for quite a while then drop and other things although I didn't know it. I don't remember it. It's great to have a good observer with you as you can see since I never remember these things, the start of the seizure spiral. On chat when those bright colors would start scrolling? I'd feel woozy, my stomach starts to flip or gorge, several times I'd go back later and see my typ;ing had deteriorated for even under a minute then I'd "drop". The theory now is after observing a few of these by my neuro and listening to what I just said, I'm not always having a drop. Some of my "drops" are actually tonic seizures which usually do give some kind of aura. The significance for me with that is that I tend to have status tonic seizures and in recent months I've been having a status tonic seizure about every 2 weeks and couldn't figure out why. I was diagnosing myself. Once I wore telemetry for several days in this case? I found out what I just described were sometimes drops with characteristic no warning but sometimes are tonic seizures, big surprise to me, which was important information to me. I know now I should have reported to my neuro a long time ago I was starting to get auras before drops. I'm sure that would have alerted him to delve deeper into why because that really is not within normal parameters of at least Atonic Drops. The goal in epilepsy is very simply, don't seize. Secondarily in my case, everyone's case, don't seize dangerously or I'm indicating for over 5 minutes. If you're having a whole week warning that isn't a real good thing to hear for me anyway. It can be that you're experiencing abnormal brain activity for that week and perhaps your doctor as he did with me, will intervene with medications like when I had deja vu forever, and stop that spiral. Please know tho, my information is lay information and based only upon my own experiences and how I have interpreted things I have read. Good luck. Gretchen PS-I note your doctors are blowing you off. Was that too blunt? Well it's how I read it anyway. I have an advanced degree in "Blown Off", I think. I could probably say that in a lot nicer way, but it's happened to me too often but why? I think there are several reasons. My husband, for instance, at this moment, is having serious and underline the word serious, potentially lethal cardiac problems. The first cardiologist he had was snippy, rude to the point I started laughing, saw my husband as a Saturday night inconvenience, and inaccurate in his cardiac knowledge. I demanded a second consult. The second doctor is SO smart, SO compassionate, he CARES about my husband and BTW I only have one husband and I do want to preserve him. I had to fight ins. co's, hospitals, all kinds of health establishment things, but I DID get him a doctor who is knowledgable and most, cares. (hint, hint) I am an expert in few things. Being in the medical world for a very long time I proclaim myself an expert in some areas of what makes some doctors good, others not hot. How to talk to a doctor, demand your rights witout offending, when to know to fold your cards, you got the wrong guy. Do not ever ever ever deify your doctor because he/she is not God or God-like no matter how intimidated you made be made to feel. They are mortal. I inform, not all doctrors in the same field are created equal. That is a FACT. Some good doctors have bad communication and listening skills. If at first you do not succed, rephrase and try and again. If necessary you might want to consider what I've nearly done and that's grab them by the shirt, drag them to your face and say watch my lips. OH no, that really never works. ANYWAY. My first neuro was uh, was,oh gosh, probably not very interested in neurology. He became very obvious of the fact that his practice was in place to finance his obsession of his recreational life. At least, he was honest. He was also the ONLY neuro within hundreds of miles. I was stuck. I am in the medical field, have been for all my long adult life and one thing it taught me was hos to speak "nursey talk", which failed me in neurology because I knew nothing about it. The BEST thing about my neuro and let's face it, this has some value on some days, he was devastatingly handsome. Oh, he also had a darling widow's peak. Other than that I can't think of many other good things about him. I asked him once why he moved to our extremely remote, mountainous, nearly unreachable and under populated area and his response was, that's where the best ice climbing was. 'Nuff said. SO, the second year I was diagnosed I started having BIG jerks, regularly, daily. I do not know how any one who has jerks could ever confuse these for "muscle spasms". Some in my neck have knocked me off my feet. Trying to be medically professional I called and I still remember what I said which was: I am having involuntary muscle movement. That is a very medical succinct statement, which didn't describe jerks and of course, he didn't ask me more questions but he should have. His reply was -- huh. Blew me off. So once again I posted but I went into more details and ALL these wise other posters said - look up myoclonic jerks. AH HA. Exactly what I was having. I called him back and described what I was having in more detail, asked if these could be myoclonic jerks and he said, sure, probably. I said these are horrid, what are YOU going to doo, what can be done. He said, oh those aren't something anyone can't handle, there's nothing that can be done. WRONG-O I found out after seeing a different and a real doctor. I again felt blown off. The moral of this story is you are the consumer. You should never be or feel victimized. You are an important person as their patient. I read you are having concerns. NO doctor should or can ever listen to YOUR language of interpretation of what you're having and ever say - you're fine. How the heck do they know without a thorough examination, perhaps probing with questions and maybe even testing? Fact is, can't be done. Also know this - there is no such thing as an accurate telephone call diagnosis. THAT is an axiom in the medical field, although not always practiced. What finally parted me and Dr. Devastating is when I called him one night paralyzed with fear I was having a stroke. I had been put on a new AED several weeks before. I'm sure that was what HE was thining of, and me to but how could I know. The fact is, he couldn't have known what was wrong with me by my near hysterical description over the phone. What happened was suddenly everything in my vision turned a deep purple color and my entire right side became uncoordinated and very sluggish and THAT could be a stroke. Dr.Devastating told me he would see me in the morning. Good by - forever. (I was having an AED reaction and my fist taste of Todd's Paralysis, but he should have probed further, justified his nonchalance, and not EVER assumed I was not having a stroke). Many of us have had to get very insistent to get appropriate attention and many of us have had to change doctors who give a da--. Sometimes a lot more than once.