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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 Steve3503 on Thu, 2007-06-28 - 14:45
Heidi, I don't know where you live or if you have insurance but I would ask for a evaluation at a epilepsy monitoring unit. They put electrodes on you, a camera and take your meds away. a controlled area that intentionally will send you into a seizure. With the electrodes hooked up and a camera on you they can see what is happening in your brain at the time of the event. Quick and easy. No guessing! Is your Nuero a epileptalogis? Hope this helps, hang in there. Steve in Ohio If we couldn't Laugh we would all go insane!

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

Submitted by SunflowerPower on Thu, 2007-06-28 - 15:31
Actually... Even in a monitoring unit, the EEG won't always pick up on simple partial, and certain types of complex partial seizures. I don't know the details of your situation, but if I were you I'd go to the ends of the earth to find a neurologist or doctor who you like to work with. If not, I'm afraid you're headed down a road of continual frustration. There's a very good book called "How Doctor's Think" by Jerome Groopman. I'm reading it right now. It has a lot of advise for how to deal with doctors. The Amazon.com link is below... http://www.amazon.com/How-Doctors-Think-Jerome-Groopman/dp/0618610030 I recommend it to everyone! "Just when the caterpillar thought the world was over... it became a butterfly."

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

Submitted by happycat2 on Fri, 2007-06-29 - 01:00
Hi. I don't know the details of your situation either. Just sounds to me you are having a rough time of things right now. You already figured strength is needed when dealing with the medical profession, and they don't always get it right? As you figured they don't always have the answers when working with them, or understand either. So sounds a good idea to me to go visit amazon- get yourself a copy of the book to read. Just my thoughts on this. Hang in there. Stay positive and upbeat. It helps. Cat. "Many false prophets are gone out into the world." 1 John 4:1

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