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give me the strength to handle my neuro...

Thu, 06/28/2007 - 13:07
I know others have gone through this. If anyone has advice, please pass it on: I have had symptoms now for nearly two years that are either textbook TLE, or doing a great job of mimicking it. The last time I had seen my neurologist, until yesterday, he finally seemed to think that's what it was. He put me on Trileptal, which is supposed to directly affect your temporal lobes. It worked for awhile, but not so good now. When I went in for my follow up yesterday, he was incredibly insensitive, didn't listen to me, seemed to imply I was either faking all of this or having panic attacks (which my symptoms don't really fit, according to the psychologist he sent me to for evaluation last year), and all around riled me up. I feel hopeless. I feel like there's no way for me to get help. I live in a pretty desolate area, and I have a state run program instead of health insurance. I don't have the option to see someone else--believe me, I've tried. He asked me to call and schedule an EEG next time I was symptomatic (I have my episodes in clusters). I am having them right now, and scheduled an EEG for tomorrow morning. I am deathly afraid that if nothing shows up, it will be impossible for me to get any helpful treatment. As I understand it, seizure activity can be hard to catch. If he doesn't see "proof" this time around though, I think he will completely dismiss the possibility that I have TLE. I am frustrated. I am sick of fighting hard to help myself and feeling like I'll lose no matter what. I want my life back. Whatever is wrong with me, I will do anything to get it treated, but I don't feel like I have the help I need from this doctor. I don't mean to whine. If anyone else has had success dealing with a difficult doctor, and would like to share some wisdom, though, I would welcome it.

Comments

Re: give me the strength to handle my neuro...

Submitted by itsmyeviltwin on Fri, 2007-06-29 - 12:04
Hi Heidi. I will be dealing with the same situation very soon. Here is what i am thinking we should do at the very least; go into the test as sleep deprived and stressed as we can so we optimize our chances of having a seizure. Yes I know it is risky but we will be in a medical facility...so pull out all the stops. whatever your triggers are, do them if you can. Stay up all night, stress yourself, etc. SOMEHOW we need to document these seizures to get the care we need. (Just don't drive yourself into the facility...in case you have a seizure on the way..that would be bad) Good luck and let us know how it goes. I hate to say hope you have a seizure but in this case, I will.

Re: give me the strength to handle my neuro...

Submitted by heidi on Fri, 2007-06-29 - 13:31
Hello--thanks to those of you that responded. I have no "real" health insurance, only limited aid through a county-run group. They will not pay for a video EEG. And there are no epileptologists anywhere in this county. When I have a sense of humor about this, I think of that bumper sticker: "Where are we going, and why am I in this handbasket?" Anyway, had the EEG this morning, and despite sleep depriving myself, having some coffee, feeling good and stressed without trying:), nothing happened. On the good side, the technician gave me a direct line to the neurophysiology unit, so next time I am symptomatic, I can call there instead of central scheduling for the hospital. She said she would make the people manning the phones aware of my situation, that they could likely schedule me right away next time, and that they could run a longer EEG for me. She even said she would call and get the order from the neuro so I wouldn't have to. I swear, the nurses and technicians at this hospital are a thousand times more helpful than the neurologist I'm stuck with. Again, thank you for your advice, and thank you for reminding me that I'm not alone. --Heidi

I'm sorry your test was not

Submitted by itsmyeviltwin on Fri, 2007-06-29 - 14:02
I'm sorry your test was not helpful..I've been thinking of you and glad you let us know. Glad you have a plan and they will work with you to try and 'catch' future seizures. I like that bumper sticker and resemble it! and will look for one for me too! (course I can't drive but WTH..I'll put it on my hubby's truck):) Also glad to hear your nurses were good to you...I am a nurse (can't work now of course) and most of us try our best, often in a healthcare system that we see is lacking, not meeting our patient's needs. Its good to remember we are not alone...its the best thing about E.Com...we can get together and share and its not quite so frightening to be going through this stuff, is it? Hugs, Deb

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