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What is going on with me?
Thu, 03/08/2007 - 20:43I had my first grand mal in July. I found out through an EEG and an MRI that I have scaring in my left temporal lobe. Since then I have had three more. I have partial seizures also. I think I have had them for a good part of my life but didn't realize what they were, and once I had that seizure they came on like crazy! Before each big seizure I got a warning except didn't realize what it was the first time. I had been having auras for days and finally that day we were at the produce market and I made my children leave because I had this feeling something horrible was going happen, like the store was going to blow up or something. Once we got home I had the grand mal. It took a lot of tinkering with my medication, but we finally got them under control for the most part.
I had my last big one almost three weeks ago. I am still jumpy and jittery and having a lot of spaciness. I feel like I am in a cloud. Noises bug me, and I can't focus with too much stimulus in the room. A lot of times when I have a partial I feel like I kind of go somewhere else for a few minutes. Like a memory, or deja vu. It is almost like that but the feeling isn't going away. The twitching and jerking won't stop, and my muscles are sore from it. My head keeps turning to the side also. I can't get in to see my neuro until the 26th. I went to the ER a few days ago and the ER doc told me he wonders if I have ever really had a seizure to begin with. HUH???
Normally I can tell I am being really spacy but it has gotten to the point that my husband keeps coming up to me asking me if I am going to be ok.
I guess my questions are:
1) Has anyone ever experienced anything like this before?
2) I have TLE. Could this be symptoms of somthing else?
Comments
Re: Re: What is going on with me?
Submitted by shere1122z on Fri, 2007-03-09 - 19:20
Thank you for your response. Some doctors are very insensitive. That must have stunk for you to have had to go through that while pregnant. I have two children myself, but didn't have problems while I was pregnant with either, thank goodness. It must have greatly limited what meds you were able to take.
When that doctor questioned whether I had a seizure before I really wanted to smack him! Unfortunatly my children, who are 10 and 7, have witnessed 3 of the 4 grand mals I have had. Very scary for them, to see mommy foam at the mouth and bite her tongue and drool blood. Let's not forget the thrashing around and eyes rolling back in my head. How and why could I fake that? I can almost understand in a way questioning partials just because a great deal of that is felt and not so much seen, and when it is seen it doesn't look like what people think of as a seizure...even a doctor. I look more like a twitchy, jerky space cadet.
You are right though...it is answers that I need, not a doctor who doesn't have one who is just too afraid to say that.
Re: Re: What is going on with me?
Submitted by snapdragon928 on Fri, 2007-03-09 - 20:24
I was having the same type of stuff going on, my eeg's are normal. I have a tic disorder, like tourette's but adult onset after taking an antibiotic. Sometimes I can control it. But sometimes they very much resemble some type of seizure. I even get head aches or get very weak and tired after certain kinds. I have a son with a seizure disorder, he is twenty three and has had only 5 seizures. But they are tonic clonic and are very hard seizures that last like 5 minutes or so. The one's you can control, you might have a kind of a tic disorder(a movement disorder) along with the epilepsy, because with a tic disorder you can control it a little sometimes. Also, a neurologist once told me that a lot of seizure activity doesn't come up on an EEG,so take heart. justdewit38 yahoo messenger. 23 year old autistic son with seizure disorder.
Re: What is going on with me?
Submitted by Karina Steele on Fri, 2007-03-09 - 00:24
I hate it when doc's don't beleive you. IT makes me mad and frustrated. I had an on call nero do an EEG once and tell me that same thing I tried explaining I could control it some but not all apparently she didn't get it I was having one after the other and had one during the EEG and it didn't show up either she basically told me to go home if I could control it. I was so frustrated when I got back to my room I started crying and she looked at me like we are just trying to help and left the room. Did I mention this was the 2nd or third time I had to go to the ER during my first pregnancy. My father in law helped a lot he said you shouldn't have to deal with that you can file a complaint so I did. I'm not used to all the legal stuff and what I can and can't do yet. Don't settle for those type of doc's especially when you have a history and are on meds. I hope you don't have to deal with that kind of doc again. Especially when you need answers.