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Can someone tell me how to live with Undiagnosed seizures?

Sat, 02/26/2011 - 16:40
People have told me that it can take years to be diagnosed and I am positive I am having seizures. Because nobody can see them they write me off, doctors included. They think I am crazy or making it up, but I know I am not. So how do I live? I try not to drive for fear of something bad happening, but my parents think I am lazy. They get mad if I ask them to drive me somewhere. They no longer take me horse back riding, so do I just give that up for years? I have tried ordering groceries online as I am afraid to drive to the store, but it is too expensive and I don't have a job, which is another issue. How do I hold down a job? What if I have a seizure at work? In May of 2010 I had to drop out of college due to a seizure. How do I go back? When I was there I would have almost daily seizure like episodes. Buses would be okay except that the closest stop is a 30min walk away, up an down two hills, walking right next to the road. When I do walk I am terrified that a car is going to hit me, not to mention that that is a long walk, especially with bags of groceries probably in the rain and cold. The worst part is that my GP doesn't believe me and not many doctors around here take my insurance, so I am having a hard time getting a referral. Pretty much all I can do is sit home and wait for things to get worse because I am sure they will. Maybe that would be better because then people couldn't ignore me. What would you do? What did you do?

Comments

Re: Can someone tell me how to live with Undiagnosed seizures?

Submitted by pgd on Sat, 2011-02-26 - 17:30
The topic of very subtle seizures affecting one's whole life is addressed in two books: the Nerves In Collision book (about the many epilepsies) by Walter C. Alvarez, M.D., and the How To (understand) Hyperactivity book (1981) about ADHD Inattentive/central auditory processing disorder, and mild dyspraxia by C. Thomas Wild. Both books (Alvarez, Wild) may provide insights here and there (no cures).

Re: Can someone tell me how to live with Undiagnosed seizures?

Submitted by Churk on Sat, 2011-02-26 - 18:03
Yes I have looked up those books, but do they tell me how to live? How to function? I can't find any copies that I can afford.

Re: Can someone tell me how to live with Undiagnosed seizures?

Submitted by dasha vu on Sun, 2011-02-27 - 01:13
i self diagnosed myself 4 years ago. No one believed me until i had a grandmal 4 mo. ago and went for a ride in the ambulance. i know my triggers and luckily have a warning. i take keppra and cut my dose down to 500 mg 2x a day. dr had me on 1,000mg. i was crazy! slowly cut down then got cocky and quit all together...felt great for 4 days then had second granmal. now i take 500mg 2x it is what it is.

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