Werwolf49-Finding a decent doctor.

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werwolf49

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Hello everyone I am from Birmingham Alabama and I just want to find a dr who actually cares about my condition and doesnt ignore me and talk over me. I've heard the speech of they dont know what causes them but it doesnt mean they should just give up and shove the latest sample drug down our throat. That gets old. Especially when you already know which medication actually works and keeps you from having seizures but i cant find a dr who will even entertain the thought that i know what actually works for me. The reason i know is because i played quinea pig for just about every drug known. I am sending out a desperate request for anyone who may could point me in the direction of a good doc please help. Thank hou so much in advance.

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Hi Keith!

I've had epilepsy for about 12 years now. Luckily I've liked the two neuros that I've had over the years. Your neuro should listen to what you have to say though.

The first meds that you are put on aren't necessarily the ones that are going to work for you. Meds, or anything else, aren't guaranteed to stop you from having seizures either. It took a while to find out what meds and dosages worked well for me, I know I felt like a guinea pig too. Some helped, some didn't and others I couldn't take the side effects of.

At first I was having around 20 seizures a month, mostly all complex partials. It took 4 years of messing around with meds, which weren't really helping at all, and my neuro suggested getting a VNS, Vagus Nerve Stimulator. After I got this I still had to take meds and it took a little while to find out the right meds and dosages.

Now I'm down to on average 6 seizures a month, usually all complex partials. They aren't as bad and they don't last as long.

I hope someone is able to point you to a good dr.
 
werwolf49 said:
I've heard the speech of they dont know what causes them but it doesnt mean they should just give up and shove the latest sample drug down our throat. That gets old.
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It sure does! I've tried over 10 drugs, to no avail and still have seizures! And they say I have "idiopathic" epilepsy. They don't know why I have seizures.

werwolf49 said:
Especially when you already know which medication actually works and keeps you from having seizures but i cant find a dr who will even entertain the thought that i know what actually works for me. The reason i know is because i played quinea pig for just about every drug known. I am sending out a desperate request for anyone who may could point me in the direction of a good doc please help. Thank hou so much in advance.
Click to expand...

Sounds like it IS time for a different dr. I, too, was a guinea pig, like I said earlier, tried many AEDs, had a left temporal lobectomy and still had seizures. I now see an epileptologist at a University hospital, specializing in seizure disorders. I also have the VNS, like Valeria mentioned. Have you seen a dr. at the University in Birmingham? It's a Level 4 Epilepsy Center.

http://www.naeclocator.org/locator/default.asp
 
Good luck on your quest .. Its true that there are those that cant seem to treat their patiants with dignity and respect .We are coming to see them for help and its very sad that at some point it gets to be an ego thing with some of them. But the few that are helpful are great.:twocents:
 
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