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The feelings after a seizure.
Sun, 01/23/2005 - 10:41Topic: Family & Friends
Hi. I wonder if anyone can relate to how I'm feeling. 2 nights ago I had a bad seizure in my sleep. Almost all of my seizures are nocturnal. If I have them for a few nights straight I will start to have them while awake. Well the next day I just layed down. When ever I got up I got a strange feeling. Just like before I do have a seizure. So of course this is terrifying. I'm sure if anyone has felt like this that you can understand. Does this happen to anyone else??? Here is one more question. It's 2 days later and nothing tastes right. Could this be a result of biting my tounge?? Today has been a hard day. Nothing feels right. Just to hear that I am not crazy would help so much. I've stated before that I don't know anyone else who suffers seizures.Thank you.Stacey.
Comments
RE: RE: The feelings after a seizure.
Submitted by Gretchen on Sat, 2005-01-22 - 03:07
Hi GregPlease, pul-leaze realize I am not personally launching an attack on you okay? I am also just happier than a lark that your (is it?) girlfriend is currently sz free after using some herbs. I saw an "Eastern Practitioner" (Chinese medicine) for several years in the US. He had me drink the most putrid tasting tea twice a day. It tasted SO bad I had to drink it at the sink and just gulp and gulp to keep it down but I do think it might have had, for a short period of time, some reduction of sz effect for me but it didn't seem to continue. But before I drank it? I found out the ingredients, checked it out with my epileptologist who said can't hurt so I tried it. I also got accupuncture treatments from him that would stop my absences for about 5 days. I tried 2 other accupuncturists who didn't have the same result though so I figured the first one had excellent technique or it just stop working for me. I would still be seeking accupuncture if I could afford it but the treatments were too expensive. I'm relating these two things to let you know my epilepsy is bad enough, I have a real problem taking AEDs, that I've also turned to safe alternatives in treating sz's. Two with good success (the other was diet). Some with no changes. One made me loopy as heck, I was worse.BUT and a very big BUT, if there were a cure for epilepsy? Trust me, thousands would be at this guy's doorstep and with the statistics of 1 out of every 100 people having epilepsy - the very import of that many people getting "cured" from an herb? That would rank right up there with the Salk vaccine that stopped the spread of polio. SO, what I would say is your friend has had a tremendous sz reduction. And I sincerely am very happy for you both. In a lot of ways who cares if it's a "cure" or an absence of symptoms? Heck, I'd settle for even half of what I have. But if an herb cured epilepsy? Just think of the worldwide impact, the noteriety, how much that would change all treatments, so many things for epileptic's lives, what it would give back to us who have often lost so much. There's also a big economic impact a cure for epilepsy that would be felt. In my country Medicare/Medicaid, disability, many social programs federal and state funded, church pantries and shelters, homelessness, serious depression, the list is endless, all of which is tremendously expensive, all of which is paid for by the government, private health ins. companies or written off by facilities, IOW a big financial burden just from epileptic treatment and support of epileptics which is borne by places that are always fighting to reduce costs or expensive medical treatment is written off by already straped facilities. I know all these 3 would love to dump that expense and would aggressively pursue the "cure" you spoke of, if it existed. Our gov't has very big ears too for news of that type. Pharmaceutical companies are the second largest lobbyist's in our Congress last I heard. They spend millions of dollars trying to get more just lobbying on their own behalf, often for research money, and it's all to make more of a buck. These are not good will companies. They are for profit. Pharmaceutical companies have botanist out in the field all over the world all the time testing barks, berries, leaves, all types of bugs and plants looking for new medicine and that's of course where a good deal of our medicine now was originated. Their ears are always to the ground for things such as you mentioend in fact I wouldn't be surprised if a pharmaceutical company read your post, probably did. That's their business. I've had several professional dealings with pharmaceutical companies and I'm not meaning to put them down, they're a business just like any other but they make a lot of money thus can spend a lot of money and they do on research and development of new drugs (R&D) watching in every venue possible for anything new they can bottle and sell. Tamoxifen for example which has changed the face of some forms of breast cancer was first found from the bark in a small stand of trees only found in in Oregon. There was no way to realistically start growing these trees rapidly in large enoug numbers, to reach enough maturity to strip the bark, for the demand. But the discovery of this, and it's not even a cure but more of an aid to prevent spread of breast cancer but when Tamoxifen hit the news this was BIG news. Effected many women, not nearly as many though as would something that would even slow epilepsy down. Until scientists could synthesize Tamoxifen? You had to apply to be dispensed this precious drug and only about 1 out 10 women were approved and for very short periods of time that was not considered a therapeutical length of time but at least gave them a boost. The pharmacy companies were wild to synthesize it for PROFIT. The bottom line for companies who make drugs is PROFIT. With people always all over the world searching and reserching many naturally occuring substances for medicinal use such as botanists, biologists of all kinds, and probably others? As powerful as pharmacy companies are? They'd have found this herb by now. We'd ALL know about it. That could not be kept in the bag. I've been on epilepsy forum boards for several years and it's worrisome to me when I see potential misinformation because there are a lot of new people who are really desparate, read about "cures", trying to learn, trying to get help, sometimes I've read some alternative methods of sz reduction that make me really worry if it's even safe PLUS there are a lot of parents with extremely sick children who are extremely desperate. I was one of those parents once. I know the desperation a person can feel. I know the feeling of feeling let down or rejected by doctors whose treatments aren't working and they seemed to then loose interest in my child. I'm touchy about claims of "cure" because so far, none has been documented and even the finest neurosurgeons won't tell a patient removing well docmented foci by surgery ever promise, or shouldn't, that a patient can expect a complete cure but reduction of symptoms.A firm diagnosis for epilepsy is for life. That's a stark statement but so far that is what is stated by all that work with it as their careers. I've read a lot of literature. I've asked experts. There is not one known person who was totally cured of epilepsy, ever. From any resource. My son had sz's for 19 years. Then they just quit. No known reason, for 6 years. He got off AEDs for the first time since infancy. Then they started up again. He had started to feel it was a "childhood" illness. He was "cured". It was crushing to him when his sz's started again and by then he was married with a child, job responsibilities, so having sz's took on a whole new context and he took a very big emotional/financial hit. If you read very many posts you'll read it isn't unusual for people to seem to have a remission of symptoms. But it's a remission of symptoms, not cure, and these people are posting usually because of their frustration the symptoms returned, often after years of being symptom free. I was controlled, no sz's, for 5 months. I'm intractable now, sz daily and now my realistic goal is for reduction of symptoms. I doubt I can ever be sz free. I wonder often though why my symptoms disappeared taking AEDs for 5 months. In fact the same AEDs I take today. The answer to that is - no one knows.Again please don't consider this a personal attack. I'm posting out of concern for those who are newly diagnosed, in shock and fear, just learning, feeling desperate, but most for parents that truly have very sick children and may get too desperate and try things that could hurt their children. Plus and again if there were any herbal remedies to "cure" epilepsy? Trust me, we'd all be hearing about it. That would be published, quickled bottled up, and sold. If for no other reason? The profit for some company would be way too great to be ignored.How I wish......I'm very happy for you and your friend's reduction in symptoms though (smile).
RE: RE: RE: The feelings after a seizure.
Submitted by Gretchen on Sat, 2005-01-22 - 04:38
(Weird - the post I wrote right before this one I didn't post on this thread! Oh well)I think this is a great thread because so many threads are started on sz's and AEDs that post ictal feelings and mild to severe disabling effects aren't discussed enough, at least to me. I tend to have status t/c's. Recover for about 4-6 hours afterwards in the ER and stagger out than home. I think I have perfected walking and talking well enough so I'm not admitted usually but in truth - I rarely even remember walking out, getting in the car, to collapse in bed dead asleep for hours at home. I got mad recently when in a hospital not used to treating me insisted I stay in ICU but there wasn't a staff member in there. Once I was recovered enough to go home why stay when no staff was watching me anyway? A nursing assistant did stick her head in the door and asked if I needed anything and I said yes, I needed help to the bathroom and she asked if my husband could help me, she was real busy. Then she said he probably knew more about epilepsy than she did any way (giggle giggle) so if we needed anything - juz holler! So I went to the bathroom, got dressed, with help from a friend and my husband, and we proceeded to leave. A male nurse grabbed my arm rather hard in the hallway to stop me, got angry sounding at least to me, and I tore off my PAPER hospital bracelet and threw it at him. I don't consider having a small piece of paper thrown at me, missing by miles, a real big threat, and I'm a nurse too. My aim for sure was really bad (I threw it on my own foot), said a few profane words, and left. That jerk reported me to my doctor for extreme, prolonged, loud profanity effecting other patients who then FIRED me. I know I didn't do all of that, two others were with me and while I admit he got two sentences rather loud that were profane it was at the back door not even near patients. Still that's not the point. As a nurse I'd never grab a patient like that particularly PI, it could actually be construed as assault, and if they have an ICU they should staff it. NO medical personnel can restrain ANY patient in ANY way without a doctor's order BTW. I'd seen this doctor one time! We were new in the community. Maybe that was good she fired me. She sure didn't know much about post ictal and combativeness. I do not like being grabbed by the arm and yanked hard by a nurse or forced to do things when I'm that post ictal (PI). I'll get equally or more so combative. Many do. It's the nature of this beast. Emotions are very "basic", and in me only I'll say reactionary and immature when I'm freshly PI. I will say though as often as I've been hospitalized and in the ER I've had far far more personnel that are educated and treat me well than thin skinned uninformed nurse's such as that man.I have several kinds of sz types and each little sz type has it's own little post ictal after shock, or none. I got a kick from the poster who had his first sz apparently right before he woke up and was fuzzed up because that's the first time I was aware I had a sz too and it was on my second day of a new job and I couldn't get dressed, couldn't find my way to work which was close, left my car running and left it parked in the driveway and knew I was "off" but didn't realize how "off" I was or why. If I've had a particularly nasty t/c? Like a status t/c? I can feel the aftershocks for 1-2 days but sometimes for 5 days or so. Sometimes I don't have real recognizable symptoms but I can't get my mind engaged well. My memory is shot. I topic hop. Can't remember things. My interest can be gotten but not held. I think at least in my case too if I have a status or very long t/c my brain seems to get excited sometimes. Although I'll sleep an incredible amount even up to several days after on and off, I'll also be more prone to simple partials, drops, jerks, absences.And yes I can have more than one type of sz at once or happening all grouped together sparking one type then another rapidly and so forth. I have absences and jerks at the same time frequently. I have jerks when I'm down for the count with drops. As far as the "am I nuts"? I went through several years of wondering about a lot of things - was I becoming nuts? Was a question I often secretly asked myself. I had Alice in Wonderland syndrome long before my diagnosis, as a child into my late 20's. That's a simple partial where you either feel extremely small or extremely big and it's a very weird feeling. I have heard very distinctly in my husband's voice "I'm home" when he's not. Those are also called auditory hallucinations. One problem I do get is an aura that is also I guess in the strictest sense a simple partial but it also signals a sz coming on always and that is an olfactory hallucination or I get over whelming smells of something. I'll smell the same thing for months up to over a year then change to something else. The first was burning chicken feathers, one was beer, "basement" or dust and mold. One great RN in an ER once put some essence of violet on a cotton ball for me that diluted that overwhelming odor, so I have some of that now. Also smelling coffee grounds was suggested to me and that helps.One of the problems I have? I might be recovered but I'm not sure if I am or I think I am and I'm not fully. The person who said they become "rude"? I think that's a nice way of putting I can get very combative. Have a very quick trigger, do things uncharacteristic of me like let loose with a string of profanity, I've struck at people who try to force me physically to do something. That combativeness in me is from fear. Sometimes immediately post ictal from a t/c I break down in wracking sobbing. It's upsetting to those around me, I'm asked why are you so upset? I don't know. I wonder too. Other times right after I recover from a t/c I'm manic like. Extremely talkative, inappropriate in the ER, talking very loud, making comments about people not rudely just observations, asking the same question over and over - LOUDLY then I always sink into my characteristic deep sleep - which is I'm sure a big relief to others. I know I'll be repeatedly asked by one person or another to settle down. I forget, start the loud manic like talking again. That lasts about 15 minutes before I crash into slumber land.I've gone back and read emails or posts I've written at times and nearly die over things I've said. Either I've been way too candid about my personal life, or I've gotten vicious in a post or email. Thankfully posts can be edited. Unfortunately once a very nasty email has been sent it can't be retracted. I tend to have an overwhelming desire to write after some sz's. Someone said that's hypergraphia. I don't know if I'm hypergraphic or not, I do write a lot, feel a need to but it's one of my emotional outlets too. I wish to heck I'd stop that PI posting and emails tho. I have never had the taste problem. I can't feel things with my fingertips though. It's not a hindrance to anything, just annoying. I know what pins and needles are but I can't remember having those. Lately I developed this all over periodic feeling I'm having little exploding sparks in my body. Just call me Sparky I guess! I don't bite my tongue, although I have but don't routinely. However I've bitten the inside of one cheek and the inside of my lower lip so often that I have a scar in both of those places that now are hypertrophic or stand out and I'm supposed to have them surgically excised because of course now I always bite them because the scar is so prominent. Since they are so prominent now I tend to bite down on the one in my cheek when I'm eating too so I guess I need to take care of that. Which I'll do after I get the front tooth replaced that I knocked out! (Anyone having fun yet?!)I think a lot more education needs to be given to employers, schools, people we live and interact with about post ictal conditions. Explaining it is a recovery period. Thinking about all of this I would say my biggest problem after a long cluster or long t/c is incredible sleepiness that can last for days and my mind is very slow. Very aggravating too. I'll listen to what someone says? And I'll have to ask them to stop after a couple of sentences. Let that sink in, before they continue. I'l read the same paragraph in a book over and over and it just won't sink in or make any sense. Like, isn't having the sz enough?Oh well. My world has gotten narrow since I got epilepsy and I think luckily for me people who are around me a lot are far more aware when I'm still PI a lot more so than I am and make allowances, thankfully.
RE: RE: RE: The feelings after a seizure.
Submitted by gregydj on Fri, 2004-10-22 - 14:18
HI, I WOULD LIKE YOU TO TRY THIS DOCTOR OK. HIS EMAIL ADDRESS IS: doctoryarsi@yahoo.comBYEGREG.