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Complex Partial/Night Terrors

Thu, 02/19/2004 - 15:47
I am new to this forum so please forgive any mistakes I may make. I am looking for different information on How Epilepsy is actually diagnosed. I was told by the Epilepsy foundation that recurring seizures is termed Epilepsy. I had been in a car accident 12 years ago. 9 months after that my problems began. At first it only happened while I was sleeping. I would scream, jump out of bed and run until I hit a door or a wall. The only way I could tell that something had occured was by the injuries, my bitten tounge (lip) or my family telling me. I have tried to jump off of the balcony, taken off my clothes, gone outside or walked around afterward talking nonsense. At times my memory is affected. I have seen many doctors. They said I suffer from Night Terrors. About 8 years ago they started to happen while I was awake. Many times I had gone grocery shopping and woke up in an ambulance. It got to where I could feel it coming. I would run and bite something. One doctor witnessed this and said "it looked like a complex partial seizure." After 10 years I was finally put on dilantin. # years ago. Now one of my main concerns is that I have NEVER been diagnosed. The last doctor I saw said that I have a mental problem. This is based on Normal EEGs. I had only seen this doctor twice. Has anyone else had similar problems in getting help??If someone else can relate to my story or give me feedback I would appreciate it. Thank you.

Comments

RE: Complex Partial/Night Terrors

Submitted by picnupthepcs on Sat, 2004-02-14 - 08:40
Hello momof1,I am with you on this one. And thanks to the Epilepsy board here and all of the others who have shaired their stories and insite with me this is a wonderfull start. I hope you find the help and comfort here that I have found. I also have suffered from complex partial seizures for several years 17 to be exact but it is only within the last 6 months that I found out what was actually happening to me. and honestly in the last two days that my Dr. said this is the type of epilepsy I have. Although my Dr. also feels that I suffer from another type of seizure too he is still looking into this as it is very complicated.Because all my EEG's even from when I was a child have all been within "Normal limits"It wasn't untill He decided to do a 24 hour EEG that it showed up there was some distubance in the frontal lobe area of the EEG and that was only while I was under sidation as I have never sleeped very well whitch caused me not to be able to gointo that sleep state for other eeg's even after being up for days at a time. It also took A major seizure one night and my husband explaining this to my Dr. as I have never had seizures that caused me to have convulsions or actaully hurt myself to an extent that others knew something was wrong. Make sure that your Neurologyst is doing everything possible to find the problem if not seek a second opinion. As I did have problems with my Dr. and had to start demanding answers although he has now givin me some amswers I am still going to seek that second opinion just to be sure. But your best bet is to have any family member who has been around when you have a "spell" is to have them make note of what is happening and if possible take them with you to the Dr. , if you have a video camera try to Video tape yourself sleeping at night and catch it on tape alot of Dr. like this as a method of being able to see exactly what happens while you are sleeping or maybe a family member can catch it when things start to happen.. I hope that I could be of some help and if you have any questions please ask I will be happy to help in anyway I can. Please remember though if you feel one Dr. is not working out seek a second opinion.Picnupthepcs.

RE: Complex Partial/Night Terrors

Submitted by momof1 on Sun, 2004-02-15 - 11:18
Thanks for your reply. It is nice to know that someone else can relate.I read another message and it was "interesting" to hear that someone else's memory is as bad as mine.

Re: Complex Partial/Night Terrors

Submitted by sloneck9 on Tue, 2005-11-29 - 22:53
Dear Mom of 1: I am 50 years old and just diagnosed with a seizure disorder in September when I had a massive grand mal and broke and dislocated my shoulder and upper arm. I have surgery scheduled for December 12 to repair the damage. I was really interested to read your post. Almost 12 years ago, I woke up on the floor next to my bed, with my head cracked open and bleeding everywhere. I had no idea what had happened. I was dreaming that I was under a mobile home that was being lowered off its jacks and the people outside could not hear me so I felt I had to throw my body out from under the trailer or be smashed for sure. That is all I remember. After this incident, I went to a local sleep disorder center and was given a sleep study. It was an overnight trip to the hospital with about 65 different wires hooked up to my head and body. The jist was, that after the study, I was diagnosed with REM Behavior Disorder. If you look up that sleep disorder, it means that during REM sleep, my brain was not producing the enzyme, or something that usually is produced and keeps us basically paralyzed and unable to act out our dreams. In my case, I had sleep walked and talked all my life, but it was always funny until this time when it was very serious and did frontal lobe damage to my brain in the impact. When I read your post, I immediately thought that it sounded like what I used to do. After diagnosis, my neuro started me on Klonopin, .5 mg at bedtime. From the first night I took it, I never had another episode. If I forget the medication even one night, I will have violent dreams and be up or sit up in bed, or get up. Its scary to think that you could hurt yourself or a loved one while you were asleep. If you have not thought of this, maybe you could check into it. The medication was cheap, easy, and had no bad side effects. Now, all these years later, I end up with a complex partial seizure that knocks me for a loop and on seizure meds for the rest of my life. Not a bad deal in all, if it keeps me from having another seizure. Maybe the REM disorder was a pre-curser to the seizure activity I now have. Just an idea and thought in case you want to look into it. Your story fits my case perfectly, and the "fix" was so simple and effective I was glad someone pointed me in that direction. Good luck on your journey! wendy in oregon

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