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Can someone tell me how to live with Undiagnosed seizures?
Sat, 02/26/2011 - 16:40Comments
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.
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.
Re: Can someone tell me how to live with Undiagnosed seizures?
Submitted by Churk on Sat, 2011-02-26 - 23:01
My biggest problem is driving. Many people have told me that I shouldn't be driving until my "seizures" are well controlled. Until that happens how do I do anything? The buses are too expensive and too far away, and my parents will only drive me to so many places. Thus far driving has been fine, but I have had myoclonic jerking while driving. The lights also bug me, so I am constantly rolling and blinking my eyes, forcing me to take my eyes off the road for seconds at a time. Sunglasses have helped but I cannot afford to buy prescription glasses right now. I have no friends, so nobody to help me get around. Is it okay for me to drive?
BTW, I have never said the word "epilepsy" to my doctor. She doesn't even know a lot of this stuff because she constantly writes me off. Oh well.
My biggest problem is driving. Many people have told me that I shouldn't be driving until my "seizures" are well controlled. Until that happens how do I do anything? The buses are too expensive and too far away, and my parents will only drive me to so many places. Thus far driving has been fine, but I have had myoclonic jerking while driving. The lights also bug me, so I am constantly rolling and blinking my eyes, forcing me to take my eyes off the road for seconds at a time. Sunglasses have helped but I cannot afford to buy prescription glasses right now. I have no friends, so nobody to help me get around. Is it okay for me to drive?
BTW, I have never said the word "epilepsy" to my doctor. She doesn't even know a lot of this stuff because she constantly writes me off. Oh well.
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?