Since I am still pretty new to all of this I was wondering... How many of you have seizure disorder with Autonomic Dysfunction? I am not sure if mine comes from lupus, or this new suspected glitch in my health.
I have been under a pretty good amount of stress personally lately, my seizures had been under good control until today. I had two unpleasant run ins with my soon to be ex, and ended up working outside for a while in the warming spring weather. I got hot which never turns out well for me. I noticed I felt sort of nausoues but put it down to the heat. I then noticed I kept smelling cigarette smoke which has always been my 'aura' for about a year now before a seizure. For some dumb reason I just kept on working away at what I was doing. A utility crew was replacing a pole by my house and one of the crew kept coming and visiting with me. His job must have been public relations. I realized I was feeling uncharacteristically irritated by him and that is when the thing hit. I have partial complex seizures so I can function during them, I just dont want to. If someone doesnt know me and doesnt realize what is happening they just keep on talking usually. I have been told I look as though I am thinking hard about something that I am not pleased about during a seizure. Anyway I had one and afterwards felt the confused emotional malestrom that accompanies them now.
I had another friend stop by to help me with some things I could not do alone.During the course of his visit I am pretty sure I made a total fool of myself, not acting like myself normally. I feel very embarassed about some of the things I said. I become very candid usually after a siezure and just announce what is on my mind. I probably blew a nice blossoming relationship. I could just kick myself. Aside from the not feeling normal after the seizure now I am angry at myself for having allowed the post seizure me dictate my actions and words. Do I explain to this person what happened? It is hard having to try to explain seizure activity to someone who knows nothing about it basically. I feel like a total goof and would like to crawl under a rock someplace. This post looks sort of odd to me too, but that is probably aftermath also. Do many of you have seizures also? If so how do you handle explaining yourself to people that are new in your life? My ex threw me out basically because I was sick and he was tired of it so how can any one else ever be interested in me if I end up allowing my symptoms to make me act unlike my normal self. Just sign me "embaressed to death, and clueless what to do about it".
I have a different type of seizure with my episodes. They vary. But I have read about the type you have. Mine are a bit more violent and quite embarassing. I usually droop my head, I can hear what's going on but can't talke-I drool and sweat profusely and usually throw up. Ugh..People think I'm on drugs sometimes. Terrible. But I do have the type to, where I feel like I'm catching about every other word someone is saying and as if I'm going to black out and I start to sweat, not as much as the big seizures, but enough sweat to make me feel uncomfortable. It seems if I'm in a situation that is causing a bit of nervousness it is even worse or if I get too excited and laugh too much it will happen too. Lovely. Then all I concentrate on is...oh please don't let me black out now. Sometimes it goes away, but I usually tell the person a day or so later and just say, you know I was feeling like I was about to have a bad episode when I was talking to you the other day. I hope I didn't say anything stupid or that you thought I wasn't listening. I just tell them that I have rare neuro disorder, they usually don't know what autonomic means, so I just skip that. This has become my opening statement and have gotten quite used to it. I just had to use it a week ago because I went to a home party and didn't know too many people and I think I got nervous. Something I never used to do because I am quite out going, but now since I don't know what my system is going to do, it makes it worse. I'm used to having to explain myself, but I'm not used to it when it's happening. I hate it, I feel stupid and it's just not me at the moment. It has shaken my confidence that's for sure. But I'm hoping with time, I can learn to relax more while in these situations. I'm so sorry for what you are having to go through. And so sorry about your ex. This is a terrible disorder. Hang in there.
Thank you for your words of advice and for making me feel not quite so alone. Interestingly enough I had forgotten most of what I had posted and when I went back and read it I felt surprised, I obviously was having more memory difficulty and was more zoned out than I remember being. Oh boy that is pretty nerve wracking when I think that I have gotten to a point where so many hours after one I am still not functioning on all cylinders mentally. Thank you Tkimber for your posting.
My daughter has seizures. They are either the grand mal type or clonic/tonic (arms go stiff and she brings her fists up to her face and turns her head to one side). She is completely unresponsive and usually has little to no warning. She was originally diagnosed with complex partial epilepsy of the temporal lobe. It was an epilepsy specialist that diagnosed her with NCS (how ironic). She is mortified when it happens and doesn't want anyone to know about it. I just tell people she has a heart condition - it's a lot easier than explaining the whole thing and people seem to accept it easily. I have her on a 504 plan. It outlines her disability, what someone should do if she has an episode, etc. It's given to all her teachers, bus drivers, etc. It will follow her through life and gets updated and reviewed every year.
Good luck and sorry about your ex. I find most people accept and are understanding it once you explain it to them.
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