Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
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 momof1 on Wed, 2004-06-23 - 15:02
It took them 9 1/2 years to put me on medication. The pumped me full of dilantin and I have been doing better. I read what you put for the post about feelings. I'm told I start making noises. I feel something and have to clench my jaw and my upper body stiffens.
RE: Hard to Diagnose.
Submitted by mexican_fire on Wed, 2004-06-23 - 15:18
That sounds exactly like a Complex Partial seizure.I have info on that for you as well.They are referred to as Temporal Lobe Seizures, and affect awareness, either partially or entirely. A person who is having this type of seizure may look as though they are in a trance and will go through a series of movements to which they have no control over.The kind of movement varies from person to person, and there may be a distinct pattern of actions that the person will follow every time they have a seizure of this type.A seizure of this type usually will start with a warning: a strange sensation or a feeling of fear (like you get). The person will stare blankley, may make chewing or lip smacking sounds or movents, move and arm or a leg, clench their jaw, pull at clothes, get up and walk around, all the time looking dazed or out of touch with reality.Although not completely aware of what is giong on around him, a person having this kind of seizure can follow simple instructions or comands if they are given in a calm, freindly, reassuring voice. Sometimes Complex Partial seizures can sometimes produce even more dramatic changes in behavior, including screaming, crying, laughing, moaning, disrobing, running, or apparent fear.Although most of these seizures last 2-3 minutes, full awareness may not return for some time afterwards, Confusion and irritability may follow during the post-ictal state, and the person will NOT remember what happened or what he or she did while the seizure was going on.Sometimes these seizures can generalize into a Grand Mal seizure, and then they are termed Complex Partial Secondarily Generalized.Nancy
RE: Hard to Diagnose.
Submitted by mexican_fire on Wed, 2004-06-23 - 14:56
What were they doing giving you that much for?!That was soomething they might give a young child.I was on 800 mgs of it, about to go to 1200 when they started playing the Russian Roulet game with all my drugs.Nancy