Can someone tell me how to live with Undiagnosed seizures?

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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 Churk on Sun, 2011-02-27 - 01:27

Before your grand mal did you drive around? If not, how did you get around?

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

Submitted by snowwoman on Sat, 2011-02-26 - 22:48

Churk,

I read your previous post about subtle seizure signs as well.

I struggled with undiagnosed symptoms for a few years. One of my problems were myoclonic jerking. At one point, I myself suspected epilepsy, but never brought it up because it seemed weird and my symptoms did not complete fit.

I went on with life, and continued to keep a watch on my health. You need to as well.

Fearing and worrying, and cooping yourself at home is NOT going to help you. It won't help you in getting help from others (because people will think you are paranoid), it won't help you get a diagnosis (because doctors will roll their eyes at you) and it won't help you have a life. The more you stress about them happening, the more they will happen.

I know you want a diagnosis, and maybe even desparately want it. But here's a tip. The more you walk into a doctor's office and insist you have epilepsy, the more they won't listen to you. Because 1) there are a lot of people who think they have some condition and try and self-diagnose, and 2) doctors have egos.

Get on with your life, in every single way that you can. Get a job, or go back to school, whichever you like. So what if you have a seizure there? The more people who see it, the more someone can vouch as your eye witness.

I eventually got my diagnosis when I had a seizure in school and my classmate and instructor both saw it and could vouch for it. My doc who has known me as someone who's outgoing, headstrong, active, refuse-to-be-sick person etc said "it's epilepsy" and referred me straight to an epilepsy specialist. I doubt I would have gotten that diagnosis if I had always gone in and said at every visit that I have epilepsy.

In the meantime, as much as possible, avoid things you feel will provoke your seizures. But DON'T avoid life.