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Anyone out there??
Sun, 07/29/2007 - 00:46Topic: Epilepsy.com Help
Hi, I'm a 16 year old and experiencing mysterous "Spells. I have them about 17 times a day on average and they last about 10-12 min. I have been to several doctors, but nobody can explain them. I have made 4 20-hour trips to the Mayo clinic in MN in the last year. When I was up there I was hooked up to the EEG for 6 days. Once I was hooked up to the EEG the spells stopped. The dr assumed they were organic seizures and gave me some meds. But, nothing helped. To get a second opinion we went to an epileptologist in Omaha. There I was hooked up to the EEG again for 6 days. Once again the spells stopped. The dr now thinks that the spells are psychogenic even though a psychiatrist said that there is nothing to that. We are now basically left in the cold to fend for ourself without a plan. How can I go from 17-0 spells by being hooked up?? Could there be something in the EEG glue, environment...etc?? I have the following symptoms when I have a spell if you have any of these or other info please let me know~
My heart rate goes up
Upset stomach
Headache in one of two spots on my head...Ice pick headaches.
My rt foot goes numb
I also see videos...call me crazy, but it's scary...I see one of the three:Flying trains, rats and slime.
When it is over I'm really tired
Short term memory loss
If you have any info please let me know!!
Thanks and God Bless!
Comments
Re: Re: Re: Re: Anyone out there??
Submitted by Stingrae26 on Wed, 2007-08-01 - 20:14
Sounds great, but I noticed you wrote...Depends on where you live. I live in the middle of nowhere. We are 4 hours from the nearest city, Lincoln.
Last time I was in the monitoring room we did the bike, which is hard for me because I have bad fibro. I was also sleep deprived. I have done everything I can think of.
Thanks again~
Re: Anyone out there??
Submitted by SunflowerPower on Mon, 2007-07-30 - 21:02
Wow. Thats really frustrating Stingrae.
I may not have a medical degree, but I can't imagine that thoes videos in your head could be psychogenic. Then again, you never know.
I agree with Epi Help that you should ask your neurologist for an ambulatory EEG. The brain is amazingly dependent on context.
Have you tried taking AEDs? Have they helped? Did you have an MRI?
Re: Re: Re: Anyone out there??
Submitted by Anonymous on Tue, 2007-07-31 - 21:26
There are some companies that make cameras that can record seizures with ambulatory telemetry. Depends on where you live though. If not available, then going into the hospital while meds are lowered is usally done. Sometimes people need to mimic their home environment by staying up late, using an exercise bike in the hospital to get tired and stay active, drink lots of coffee- whatever you do at home! Hope something works for you!