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Old 09-17-2010, 08:44 AM
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New to posting


This is the first post for me. I have been reading the messages others have posted and find the information very useful and the stories inspiring.

I have had E since I had a head injury when I was a child. Started out as absence seizures, then slowly progressed to what I have now; complex partials.

Going through some med changes right now. Introducing Keppra, then will phase out the Depakote. So far going OK. Only a bit tired; all the time.

My issue right now is trying to find a doctor I am confident with. I am seeing a Neurologist now and he is just clueless about my particular case. It's like he never reads my file. I just saw him and we discussed a new treatment plan. He asked me to call the office to discuss my recent levels and acted like he had no idea why I was calling. It's happened like this more than once!

Totally aggravating...
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Old 09-17-2010, 08:52 AM
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Hi Reece, welcome!

Unfortunately, frustrations with doctors seems to be a common story here at CWE. I hope you kind find another doctor who's more responsive. There are some sites that provide patient ratings/recommendations for doctors -- maybe you can find a good neurologist not too far away.

Good luck with the Keppra. As you probably know from reading posts here at CWE, it can sometimes affect mood and produce "Kepprage". Vitamin B6 can help with that side effect if you feel it happening to you.

Best,
Nakamova
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Old 09-17-2010, 09:09 AM
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Thanks for the welcome Nakamova.

I am in the process of selecting a new doctor. I also feel the best way to go about it is to get other patients feedback.

So far the Keppra has not produced any rage. Only been taking it for 3 days now.
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Old 09-17-2010, 12:14 PM
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Welcome to CWE Reece.
I wish you all the best with your new medication as well as with finding a doctor that fits.
CWE is a great support system, so I am sure you will find what you need here.
Also check out the Library. Tons of good reading there.
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Old 09-19-2010, 09:42 AM
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Hi Reece, welcome to the forum.

Originally Posted by Reece View Post:
... My issue right now is trying to find a doctor I am confident with. I am seeing a Neurologist now and he is just clueless about my particular case. It's like he never reads my file. I just saw him and we discussed a new treatment plan. He asked me to call the office to discuss my recent levels and acted like he had no idea why I was calling. It's happened like this more than once!

Totally aggravating...
lol. I can relate. I remember once being at the doctor's office for a regular appointment (because the doc insisted on scheduling such to verify the med schedule was still approriate, etc.). When joins us in the room, he asks us what's up - why are we there? Umm... Because you insisted on an appointment. Don't take it personal IMO. They see too many patients in a week to keep every history in their head.
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New to CWE? I suggest reading the proactive prescription and epilepsy 101 threads. Also check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback. More great stuff can be found in the list of the best forum threads.

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Old 09-19-2010, 07:51 PM
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welcome!.....I having been taking keppra xr now for just about two weeks. I am noticing a bad taste in my mouth/tongue. how about u?
good luck in finding a new neurologist!!
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Old 09-20-2010, 12:42 PM
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Thank you Daisy Girl!

Have not had a bad taste experience. Actually only thing so far is the feeling I am stoned from time to time. OK if I am at home, but I work outside the house and it's hard to pull off sometimes.

I am going to look into a couple Epilipsy Centers in my area this week.

Have a great day!


R
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Old 09-20-2010, 12:50 PM
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Hey, Reece,

Welcome to CWE!

Regional epilepsy centers are a great source of good doctors. Another good source is www.healthgrades.com. Patients rate doctors. Look at the individual componants of the ratings, though. A doctor can get a "0" on care, and a "5" on office ambiance and personnel, and still get an average of "3." If you see the individual ratings you see what people thought of their actual care.

I'm glad you are getting along okay so far on Keppra. Stay aware, though. Sometimes it takes weeks (months?) to have side effects kick in. Are you keeping a seizure journal? It really helps keep track of triggers, seizures, meds, and side effects. I keep mine on www.seizuretracker.com

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Old 09-21-2010, 07:55 AM
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Thank you Endless for the source information. It's great that this kind of program is out there. Used to just go to the doctor nearest my house for convenience. Found out that is not always the best option.

Have not started a seizure tracker yet. I need to though; especially since I have started with Keppra in addition to my other medications. Just having the absence and some auras at this time. Hopefully nothing more serious will break through.

R
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