Seizures Since Age 12 and now 41

[Blackout]

Hello everyone,

I just found this site and I look forward to reading and posting about our common condition.

I have complex partial seizures and have had them since I was 12 or so. I didn't find out the cause of the seizures until I was 27 when a dermatologist put two and two together, did a biopsy and found out I had Tuberousclerosis. I have been on every drug on the market and I still had/have at least two complex partial seizures a week on average.

My seizures are definitely tied to sleep or lack thereof. I had one earlier tonight because I haven't slept well lately. I have completed all my classes for a doctoral degree in education and now need to finalize a dissertation topic and I feel the pressure; the lack of sleep and stress are often the causes of seizures for me.

Anyway, it is also stressful because I am going to need a new job and never driving before and never knowing when I might have a seizure limits my opportunities.

I don't and have never let epilepsy define me and I owe that to my dad who never let me use it as an excuse and I have never seen it to be that big a deal. I blackout, go through the refractory period, shake it off and move on. I have never driven a car and most likely never will. This causes me to walk and ride a bike 12 months of the year, even in the freezing cold winters. It builds character.

Anyway, I have achieved a lot and have more to do. I hope I learn from all of you and I hope I have something to offer you as well in terms of my experience as a person with epilepsy. I don't let it define me and don't let it define who you are either. We are much more then how our brain waves hiccup once in awhile.

[Nakamova]

Hi Blackout, welcome to CWE!

I hope you feel free to explore the different forums and chime in or vent as the spirit moves you.

There are different sleep and relaxation strategies that you might consider (if you haven't already): deep breathing exercises/meditation, relaxing CDs (along the lines of Delta Sleep system), melatonin, etc.

Congrats on finishing your coursework, and good luck with your dissertation and post-doc plans.

[Meetz1064]

and how do you do, Blackout? Love the screen name!

Wow, you're quite an example for many who are just now being diagnosed, or for those who are still having trouble with their diagnosis. It's impressive to hear of your accomplishments. Kudos to you!

'Tis also a good thing that one of your doctors was actually able to figure out what caused the seizures in the first place....many of us are never able to find out. Yeah for you!

Welcome to CWE! I'm sure you're going to like it here, and there are plenty of nooks and crannies to check out, as Nakamova pointed out. Feel free to find your way around, make plenty of friends, and just hang out. We have a wonderful dinner party going here, and Mr B has built us an AWESOME home here....

Take care!

Meetz

[RobinN]

Welcome Blackout -

I was wondering if you have ever read anything about neurofeedback. It has been shown to work with sleep issues. The brain is trained, and over time is strengthened so it doesn't use seizures when under stress. There have been cases where the brain has been injured through illness, and it learns to work around those areas.

There is a lot of information on the subject here at CWE. You can read it at your leisure.