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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 snowwoman on Sun, 2011-02-27 - 00:25

 

Wait a minute. Are the only "seizures" that you have the myoclonic jerking?

I wasn't allowed to drive because I also have absences. When I had myoclonia (and happily unaware of the absences), I drove--and the doctor allowed me to drive. The doctor even said many people have myoclonia here and there (esp. if falling asleep), and there are a few types of myoclonia that are not epilepsy related.

For quite a few years, I thought mine were not epilepsy related in fact! I only began to suspect it might be epilepsy when someone who didn't know I had myoclonia said I had some "violent" jerks, and I didn't remember them happening. And I went to see my doctor who continued to talk to me for a while and then she asked me if I had jerked in her presence, to which I said no. And that's when she told me I had had 3 mini ones. So she 'tested' me out by nonchalantly chatting with me. They later confirmed my epilepsy with EEG and eye-witness reports and I responded to all the drugs which are commonly prescribed for JME (which at that time, I did NOT know I had JME, so it wasn't a placebo effect). And I have family history.

Change docs! Or if you can't, try a different approach with her. Instead of reporting 200 things, go in with a well-prepared list and say, "these are my (say) 3 main concerns. I need 3 minutes of your time while I read it out to you. I will appreciate it if you will give me that time". Or call her nurse ahead of time and give them your list so they can append to your chart and bring another copy with you. I made friends with my neuro's nurse and she's the person I call when I have seizures in the night and she will always append a note to the front of my chart.

As for the lights bothering you, get a cheap cap/hat with a brim to shade the light.

As for your parents, maybe trade favours with them. Drive me every day (be reasonable though, and try and do as much as you can when you've been driven to a place, and not asked to be driven every few hours) and in exchange, I will wash the toilet every week. Or something.

 

 

Wait a minute. Are the only "seizures" that you have the myoclonic jerking?

I wasn't allowed to drive because I also have absences. When I had myoclonia (and happily unaware of the absences), I drove--and the doctor allowed me to drive. The doctor even said many people have myoclonia here and there (esp. if falling asleep), and there are a few types of myoclonia that are not epilepsy related.

For quite a few years, I thought mine were not epilepsy related in fact! I only began to suspect it might be epilepsy when someone who didn't know I had myoclonia said I had some "violent" jerks, and I didn't remember them happening. And I went to see my doctor who continued to talk to me for a while and then she asked me if I had jerked in her presence, to which I said no. And that's when she told me I had had 3 mini ones. So she 'tested' me out by nonchalantly chatting with me. They later confirmed my epilepsy with EEG and eye-witness reports and I responded to all the drugs which are commonly prescribed for JME (which at that time, I did NOT know I had JME, so it wasn't a placebo effect). And I have family history.

Change docs! Or if you can't, try a different approach with her. Instead of reporting 200 things, go in with a well-prepared list and say, "these are my (say) 3 main concerns. I need 3 minutes of your time while I read it out to you. I will appreciate it if you will give me that time". Or call her nurse ahead of time and give them your list so they can append to your chart and bring another copy with you. I made friends with my neuro's nurse and she's the person I call when I have seizures in the night and she will always append a note to the front of my chart.

As for the lights bothering you, get a cheap cap/hat with a brim to shade the light.

As for your parents, maybe trade favours with them. Drive me every day (be reasonable though, and try and do as much as you can when you've been driven to a place, and not asked to be driven every few hours) and in exchange, I will wash the toilet every week. Or something.

 

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

Submitted by Churk on Sun, 2011-02-27 - 00:56
The last time I saw my doctor I told her about a scary episode I had a few weeks ago. I was at the store and I began to get really tired, confused, and dizzy, like being put under anesthesia. I told her that I was wandering around the aisles, having no idea what I was supposed to be doing even though I had a list. I told her I was slightly woozy and was looking for a chair because I was positive that I was going to pass out and/or have a seizure. Actually I didn't use the word "seizure" but I implied it. I told her of driving around sometimes and feeling confused and lost, afraid I was going to forget how to get to places where I have been dozens of times, or sometimes being on "auto pilot" like I am not fully "there" but somehow still getting home. I don't trust myself to drive, even to the store two minutes away. I am afraid I am going to space out and crash or get lost which (getting lost) has almost happened. My doctor knows nothing else because, as lovely and nice as she is, she thinks I am crazy and making things up. As for the myoclonic jerks I know when they all happen and though I might have had absence seizures (sudden blank mind, losing train of thought, unable to recall events right before) I do not believe they were associated with my myoclonic jerks.

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

Submitted by zealot on Sun, 2011-02-27 - 12:19
Churk, Your doctor isn't lovely. She thinks you are making things up. Why on earth would you and why on earth would she think so? Your doctor is nuts. Please find a new doctor. You need to live your life. Keep a seizure diary if you can to help you learn your triggers and avoid them. You need to live your life. Hiding in your house out of fear will only make things worse. You can get "clip ons" for your glasses if you can't afford sun glasses. They are not expensive. Please do as much as you can and don't let fear keep you from living your life. 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!

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