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Hard to Diagnose.
Thu, 06/24/2004 - 10:58Topic: Family & Friends
Is there even one person out there who DIDN'T know what was wrong from the very start? I have seizures, usually, in my sleep. It has been 12 years now. They started 9 months after a serious car accident. After about 5 years one Neurologist witnessed an episode and stated that it "looked like a Complex Partial Seizure" We tried Tegretol and Rivotril, nothing. We have read quite a bit on this type of seizure and it fits my behaviour. I have to live in a ground floor or basement apartment due to the danger of a balcony or stairs. After 9 years they finally put me on dilantin. It seems to work. But we still don't know 100% what is wrong with me. I have met a few people with epilepsy. Most of them were extreme. Without medication it was 100% noticable. Not with me. They happen when they want to. Has anyone else experienced this??? It would help to know that I am not the only one. That I am not crazy. Any response would be greatly appreciated. Thank you Stacey.
Comments
RE: Hard to Diagnose.
Submitted by jconstantz on Fri, 2004-03-19 - 18:23
Hello. You people are a godsend to me. I knew something was wrong with my daughter (19 years), but she wouldn't let me take her to the doctor. She had a seizure while on Active Duty with her Army Reserve unit. The doctors diagnosed her with epilepsy after she had another seizure during the CT scan. She was out in the field unloading a truck. She fell to the ground, was incontinent, and is very embarrassed. Now I know why she wet the bed all these years. She is really good at covering it all up. Sometimes, she stops breathing. From reading this website, I've learned that THANK GOD there is good treatment now. THANK GOD that there are good doctors out there who care. Furthermore, I realize that I have been having seizures, too. I lose track of time. Sometimes, I know its only a few seconds, because I can still follow in a lecture. However, sometimes, it lasts for a few minutes, say 5-15, and when I get back, I'm totally lost. I can't take notes because I'm confused about how the instructor got from one point to another. I've never even considered that what I have could be seizures, because even in spite of that, I still make good grades. I also have MDD (Major Depressive Disorder) and PTSD (Post Traumatic Stress Disorder). I learned from this website that my seizures could be related to my other disorders. You know, there is just so much one person can take in. I have experts who help me all the time, but I wonder if I will be able to complete my teaching degree. Will I be able to adjust to the rigours of teaching? I don't know. I'm completing my degree program anyway. I refuse to give up on myself. And, even though I have not written here before, I hope that we can be friends and keep each other posted. I don't know what the Army medical corps prescribed for my daughter, but I know she'll be alright. At least now, I know she is not going to Afghanistan! THANK GOD!!Take care. Julia
RE: Hard to Diagnose.
Submitted by momof1 on Sat, 2004-03-20 - 18:12
Thank you. I honestly didn't think that I would get replies like this. Most people know what is wrong with them. I have never been 100% diagnosed. One doctor witnessed it and said it was a "complex partial seizure". Another neurologist said it was in my head. But based on all of the ambulance reports, reading I've done, the sympoms ( they started after I hit my head on the windshield in an accident), I know what's wrong with me. Knowing that others have had the same sort of problems with Drs etc. helps a lot. Stacey
RE: Hard to Diagnose.
Submitted by picnupthepcs on Fri, 2004-03-19 - 09:07
Hi Stacey,I am so happy that you wrote and I hope that maybe I can help you a little, maybe we an both help one and other. I have just started seeing Neurologists in the past 6 months for a condition I thought was nothing even close to a seizure disorder. I started noticing the simptoms about 17 years ago but due to the abouse in my family I was afraid to tell my parents afraid that nobody would listen to me had i known then what I know now I could have saved myslef alot of greif. But I have learnd alot in the past few months. Although I did seek medical attention when I was about 18 it was not what I needed at that time I thought I was having panic attacks because everytime I had a seizure I would get so scared and my stomach would hurt then I would have the worst shest pains so I told the Dr. about this and not the other symptoms all they ever did was check my heart witch naturaly was fine. so I kept living this way. then I got luck for a couple years maybe because i wasn't so stressed out I'm not sure but they seemed to go away and I thought it was all over but then when I got pregnant with my second child 4 years ago bam it started again it just so happened I was in the Dr.'s office and had an eppisode the problem is that i felt it comming on and started screamming the nurse ran in and because of some of the symptoms decided to check my sugar and it just so happens my sugar was a little low. so wouldn't you know Happy was I to finaly figur out all these years later all it was is low sugar. instead of taking care of things then i put it off and continued to struggle with the eppisodes for the next three years the aoras the stomach pains the blacking out ect. the forgetting things pieces of time that were lost, finaly i couldn't take it any more and last August I told my Dr. I need to see her cause I thought my sugar was way off and I couldn't deal with it any longer.Immagin my surprise when my Dr. looks at me and says there is nothing wrong with your sugar you need a Neurologist ( this is baised on a whole line of questioning and other information she had, a past hospitalization and things too)I don't think i cried that much in a long time i was in shock. and i was so confussed how could i go through this for so many years and nobody noticed? I am sure your wondering the same thing. Most of my seizures happen at night also some durring the day and have been witnessed by my family but as a child (i am just finding this out) when my family whitnessed then my parents would disciplen me thinking i was acting out. I also have grand-mal seizures, but am fortunat because i have only had them while sleeping. now my husband keeps a log of my seizures at night as we have just become aware that i do have grand-mals only because of a few conversations when my husband would call me from work and say things to me about my actions in bed at night and other things like blood on my pillow when i wake up and i have bitten myself ect. I am on topamax for the simple partle seizures and for the complex partle seizures witch has helped alot but i still have break through seizures when I am stressed out or haven't had enough sleep, and am now strting to take tegratal for the grand-mal seizures but wont know how well that works for a few more weeks.I am sorry this is such a long not but I hope it will help you in some way and if you would like to talk you can email me any time.picnupthpcs2@yahoo.comKeep your head up Cindy