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 Jkmome2 on Mon, 2011-02-28 - 11:47

I agree with you snowwoman! I couldn't get my liscence because I was having absence seizures with blackouts and migraines following the seizures. I went through a few doctors when I was a teen before my parents found one that believed me. Even then I wasn't classified epileptic. EEG rarely picked up any activity making diagnosis very difficult. I still think that doctor thought I was seeking attention and believe me that was the last thing I wanted in high school. Blacking out and falling down 3 flighs of stairs was not an act! Fast forward 15yrs., I'm now on topamax and it works for me. It's been a long road to get there of trial and error finding what does and doesn't work (depakote was a nightmare!). I did have a couple of years in my twenties when I wasn't on meds but that didn't last long. I realized that the day I was driving on the interstate with my baby in the back and I drove over 20 miles on "auto pilot" and when I snapped out of it I did not even know how I had ended up driving the car in the first place! Don't stop living, but demand better care from your doctors! Fight for your rights, but don't walk in to their office already diagnosing yourself, they hate when you do their job for them. Logging all of you symptoms in a notebook for at least a week is some times the best way to get a diagnosis. Take care and good luck

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

Submitted by 3Hours2Live on Sun, 2011-02-27 - 04:55

Hi Churk, I didn't receive an official governmental recognized diagnosis of "epilepsy" until decades after my first seizures. The element of surprise with epilepsy was more with the verification of "The Peter Principle" in everything involving the notion of "health" and "abilities", along with the arbitrary actions from the administrators of society seeded with the word "epilepsy". "Amusing suprise" comes close to describing my response to noticing the multiphasic statistical attributes of Temporal Lobe Epilepsy (TLE), and the numbers also "wrecked" the "dream on" expected statistical results for the class at university in studies of the MMPI. It was a lesson in what is to be done with an "outlier" (treat the person as if they are not there in the sample). Hindsight tells me that it's best to blame all of the phenomena associated with being intertwined with epilepsy as a person, well, just to blame it all on migraines, and take the minimal amounts possible (also so as to preclude the officially rejected notion of "kindling") of Anti-Epileptic Drugs (AEDs, for me, regular Keppra) to control the "slow-seizures" of migraines, without the intense prejudicial stigma of epilepsy (many drugs precisely for migraines tend to aggravate seizures): http://books.google.com/books?id=7dE7PxgnyvoC&printsec=frontcover&dq=Sacks+migraine&hl=en&ei=eBxqTZOkAYegsQPB59SmBA&sa=X&oi=book_result&ct=result&resnum=1&ved=0CDoQ6AEwAA#v=snippet&q=epilepsy%20differential%20Aura&f=false It's also best to avoid subjection to the practices of true-believers and faithful practitioners of the professional "Mental Health/Mental Disorder Sciences" like the plague. Tadzio

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

Submitted by zealot on Sun, 2011-02-27 - 12:13

Churk, You should file a professional complaint against your doctor. Accusing you of "making up" your symptoms is unacceptable. You need to find another doctor ASAP. The doctor has no expertise in neurology, nor any reason to disbelieve you. I was finally diagnosed at age 55 after a history of seizures, headaches, and serious neurological problems going back as far as I can remember. That diagnosis has since been removed by doctors with G-d only knows what motives. They did not have sufficient data to do so and are guilty of malpractice for other reasons. I, too, do not drive because of all of the little and not so little bits of lost time. I gave up many of my dreams because I knew I had a problem that the doctors ignored. I had such bad neurological problems that I was tested for myaesthenia gravis when I was eight, which I fortunately do have. That was ruled out and no further testing was done. Too bad. I had episodes of extreme confusion and disorientation in school, which were ignored. My myoclonic seizures were worse than ignored. My migraines and other headaches were discounted and ignored. I was imagining things or making them up. Please take hold of your life and do not allow yourself to be treated this way, especially by your own family. They should listen to you and support you. They should help advocate for you with your doctors. Enough of the shoulds. Mine didn't either. Just make sure you don't let anyone push you into psych. You are not crazy and don't let anyone say that you are. I can't take the meds, so I have had to learn to reduce my symptoms by taking the best care of myself possible. My current living conditions make that difficult, but I do the best that I can with what I have. That is the best advice I can give to you. I don't understand why you had to drop out of school. I think you should go back. If you have seizures in public that people can understand, this will bolster your case. The social contact would be very good for you, not to mention the education and the degree you would receive. Please don't stop living your life. I lived mine. I made sure I had jobs that didn't require steadyness (I worked as a consultant) and I made sure I lived in places where public transportation was available. You need to do the same. I know that it will be hard to pull yourself out of your slump, but you can't keep waiting for a diagnosis that may never come and might be taken away from you by the next doctor your see. All of the best. I will keep you in my prayers. Baruch Hashem. Hoshia na. Devorah Zealot Soodak www.psychout.typepad.com/ the zealot needs help! P.S. Please click here to read my latest post. P.P.S. Please click here to read my latest or last featured post. P.P.P.S. I made a new video. Please watch it on YouTube. P.P.P.P.S. I recorded a video and put it directly on Facebook! Please watch it!

Churk, You should file a professional complaint against your doctor. Accusing you of "making up" your symptoms is unacceptable. You need to find another doctor ASAP. The doctor has no expertise in neurology, nor any reason to disbelieve you. I was finally diagnosed at age 55 after a history of seizures, headaches, and serious neurological problems going back as far as I can remember. That diagnosis has since been removed by doctors with G-d only knows what motives. They did not have sufficient data to do so and are guilty of malpractice for other reasons. I, too, do not drive because of all of the little and not so little bits of lost time. I gave up many of my dreams because I knew I had a problem that the doctors ignored. I had such bad neurological problems that I was tested for myaesthenia gravis when I was eight, which I fortunately do have. That was ruled out and no further testing was done. Too bad. I had episodes of extreme confusion and disorientation in school, which were ignored. My myoclonic seizures were worse than ignored. My migraines and other headaches were discounted and ignored. I was imagining things or making them up. Please take hold of your life and do not allow yourself to be treated this way, especially by your own family. They should listen to you and support you. They should help advocate for you with your doctors. Enough of the shoulds. Mine didn't either. Just make sure you don't let anyone push you into psych. You are not crazy and don't let anyone say that you are. I can't take the meds, so I have had to learn to reduce my symptoms by taking the best care of myself possible. My current living conditions make that difficult, but I do the best that I can with what I have. That is the best advice I can give to you. I don't understand why you had to drop out of school. I think you should go back. If you have seizures in public that people can understand, this will bolster your case. The social contact would be very good for you, not to mention the education and the degree you would receive. Please don't stop living your life. I lived mine. I made sure I had jobs that didn't require steadyness (I worked as a consultant) and I made sure I lived in places where public transportation was available. You need to do the same. I know that it will be hard to pull yourself out of your slump, but you can't keep waiting for a diagnosis that may never come and might be taken away from you by the next doctor your see. All of the best. I will keep you in my prayers. Baruch Hashem. Hoshia na. Devorah Zealot Soodak <a href="http://psychout.typepad.com/blog/">www.psychout.typepad.com/</a> the zealot needs help! P.S. <a href="http://psychout.typepad.com/blog/2011/02/carpe-diem-the-jewish-zealot-lunatic-epileptic-lepers-misadventure-in-philadelphia.html">Please click here to read my latest post.</a> P.P.S. <a href="http://psychout.typepad.com/blog/2011/02/carpe-diem-the-jewish-zealot-lunatic-epileptic-leper-is-freezing-in-philadelphia.html">Please click here to read my latest or last featured post.</a> P.P.P.S. <a href="http://www.youtube.com/watch?v=-vZzOn2Hcr0">I made a new video. Please watch it on YouTube.</a> P.P.P.P.S. <a href="http://www.facebook.com/video/video.php?v=119992628073907&comments">I recorded a video and put it directly on Facebook! Please watch it!</a>

Churk, You should file a professional complaint against your doctor. Accusing you of "making up" your symptoms is unacceptable. You need to find another doctor ASAP. The doctor has no expertise in neurology, nor any reason to disbelieve you. I was finally diagnosed at age 55 after a history of seizures, headaches, and serious neurological problems going back as far as I can remember. That diagnosis has since been removed by doctors with G-d only knows what motives. They did not have sufficient data to do so and are guilty of malpractice for other reasons. I, too, do not drive because of all of the little and not so little bits of lost time. I gave up many of my dreams because I knew I had a problem that the doctors ignored. I had such bad neurological problems that I was tested for myaesthenia gravis when I was eight, which I fortunately do have. That was ruled out and no further testing was done. Too bad. I had episodes of extreme confusion and disorientation in school, which were ignored. My myoclonic seizures were worse than ignored. My migraines and other headaches were discounted and ignored. I was imagining things or making them up. Please take hold of your life and do not allow yourself to be treated this way, especially by your own family. They should listen to you and support you. They should help advocate for you with your doctors. Enough of the shoulds. Mine didn't either. Just make sure you don't let anyone push you into psych. You are not crazy and don't let anyone say that you are. I can't take the meds, so I have had to learn to reduce my symptoms by taking the best care of myself possible. My current living conditions make that difficult, but I do the best that I can with what I have. That is the best advice I can give to you. I don't understand why you had to drop out of school. I think you should go back. If you have seizures in public that people can understand, this will bolster your case. The social contact would be very good for you, not to mention the education and the degree you would receive. Please don't stop living your life. I lived mine. I made sure I had jobs that didn't require steadyness (I worked as a consultant) and I made sure I lived in places where public transportation was available. You need to do the same. I know that it will be hard to pull yourself out of your slump, but you can't keep waiting for a diagnosis that may never come and might be taken away from you by the next doctor your see. All of the best. I will keep you in my prayers. Baruch Hashem. Hoshia na. Devorah Zealot Soodak www.psychout.typepad.com/ the zealot needs help! P.S. Please click here to read my latest post. P.P.S. Please click here to read my latest or last featured post. P.P.P.S. I made a new video. Please watch it on YouTube. P.P.P.P.S. I recorded a video and put it directly on Facebook! Please watch it!

Can someone tell me how to live with Undiagnosed seizures?

Comments

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

Submitted by Jkmome2 on Mon, 2011-02-28 - 11:47

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

Submitted by 3Hours2Live on Sun, 2011-02-27 - 04:55

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

Submitted by zealot on Sun, 2011-02-27 - 12:13

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