What's your postictal state like?

Re: What's your postictal state like?

Submitted by rebmil on Fri, 2013-08-02 - 15:45

Hello. I would like to tell you how my postictal state is like after I have a seizure. I have grand mal seizures that only happen in my sleep. I have 1 maybe 2 seizures a month. Sometimes I go several months without a seizure and then the next month I may have 2 seizures in one day or 2 seizures over 2 days. Right now I take no medication for my seizures. I have no health insurance and I am currently unemployed, looking for work. But if I had a choice, I would rather not take any med for my seizures. A couple years ago I was taking Dilantin, then it was switched to Phenytoin, then I was put on Tegretol. All three of those seizures meds were not good for me. Dilantin made my stomach very nauseated and I was throwing up all the time 5-10 times a month. Phenytoin was the same, made me sick with stomach nausea and made me throw up constantly. Tegretol was worse, made me have uncontrollable anger and rage. So I got off that med and went back on Phenytoin. After taking the med for a year I started to lose my memory. So I weaned myself off the meds myself and now I take no meds for my seizures. But I would rather be med free and not take anything for my seizures. I have been without meds for about 2 years now and dealing with the seizures as I get them and I am glad I am not taking any meds. All seizure meds are not good. Even though they stop seizures, the side effects are just too much. Personality problems, memory loss, bone loss, kidney and liver problems, etc., etc. etc. 

After I have my seizures and wake up, I am confused. I know something happened but I just don't know what it was, then it comes to me that I had a seizure.  My legs are sore, the right side of my tongue is bitten and sore, I have a bad headache, and extreme nausea. I have peed my pants and I am very tired. If I had a job and had a seizure on the day I had to work, I would have to go to work that day. I would be sore and tired all day then come home and go to bed early. If I had nothing to do the day I had a seizure, I would rest all day and lay on the couch and take a nap. 

I very rarely tell people outside of my family I have seizures because they don't understand and don't know what I go through every day. Even though I have seizures once a month, I still suffer from seizure side effects almost every day. I have stomach nausea almost every day and throw up quite frequently. I have auras for about a week after I have a seizure. I have headaches quite frequently also. I have trouble sleeping and am tired alomst every day when I wake up.

Well I hope this helped you. Take care.

Re: What's your postictal state like?

Submitted by Lara D. on Mon, 2013-08-05 - 23:41

Hi Lina,

I have had seizures since I was 12 years old. I have different types, but I'll talk about the Grand Mal now. They vary in strength and time, if it comes in my sleep usually I won't know untill the next morning, waking up with the  bad headaches, bad chewing wounds in my mouth (I have scars along both sides inside), very tight and sore jaw, body is sore, as if I was exercising all night. It is often hard to breathe, too. Then I'll have to hang about trying to sleep or relax if it was a big one. Often my partner says I was shaking in the night and I wouldn't have known though.

With waking seizures, I'll usually have a banged and scratched up head and face, hands, depending where I have fallen. So all the same physically and mentally is there plus some injuries, and this is what sometimes snaps me out of whatever state it was. Sometimes it is what I can see or hear, or even smell, and when I know it, like the sofa leg near my face for instance, or music, or food it can be comforting.

But this all happens within seconds of beginning to come to, it's odd, all the info comes very quickly, but then I am usually to find out later that I was away for anywhere from 15mins to hours and hours, even days once, before waking. If I am coming to properly very soon then I feel very scared and upset and emotional. A weird feeling that is not confusion when I know whats going on, as I've had so many, but I am certainly not right in my head, and can't remember some things, and some words, and that makes me more angry, too.

Sometimes apparently I have spoken to people after 'waking' and before sleeping again. I don't remember it but my partner tells stories of me talking nonsense, even speaking in some kind of language I seemed to understand myself, but nobody else could recognise anything! Then there's the wandering. I'm told I walk around very determined to, more than once, leave the house or do something else that is a bad idea, and I get angry when he won't let me. It's scary.

The parts I do remember go like this. When I wake up I usually need to take stock, where, who, when, etc. I remember in the hospital once looking at my parents, knowing I should know who they were, but I didn't, and turned to the nurse, I said "Who the f*** are these people?"!

I know waking up on the couch/ground/ambulance/surrounded by people etc and being so confused I can't even speak or know where is up, other times there is a feeling that is the most horrible thing to describe, like it's is happening and I can't do anything, or talk to my mother, so helpless, makes me cry.

I know waking up upstairs, in the chemist, in the big shopping centre nearby, talking to the people, saying "I need my purple pills", so I could remember that, and my mother's mobile number, but not my name or how I got there! In my pyjamas. With really bad ones, sometimes after a seizure it morphs into some other kind, which is the wandering stuff. Apparently I get full of energy. Sometimes there are particular food cravings as well. Strangely, Mcnuggets often make an appearance then. Nothing else.

I know waking up in a different country! I got on the plane here, had 8 seizures on the landing, woke up in my cousin's (who I had never met before) bed 3 days later, and seeing snow at the window. There is no snow where I come from. But I was calm, because I knew exactly what must have happened and somebody would tell me about it.  So if I sleep then I can miss the whole post-ictal thing thinking, sort of. So there's a bit on how  some things go here, hope something helps.