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See neuro tomorrow- gonna beg off Topa

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Old 10-03-2007, 06:11 AM   #1
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Angry See neuro tomorrow- gonna beg off Topa

This has been the worst month of medication adjustments in 11 years (since the autonomic stuff was diagnosed). I'm a zombie on a good day; time is screwed up, I'm barely awake most of the time, etc, and this is on a portion of the normal seizure dose. If he wants to raise it, I just can't see functioning at all, and I live alone, with no friends around- just a dog with a mind of her own. I AM my support system. When I'm out of commision, life shuts down.

The Tegretol worked so much better- and in a smaller dose than what I was on- I'm one of those where 'less is more', and still get therapeutic levels; why do they always want to add drugs, instead of realize that sometimes, breakthrough seizures happen with stress, sleep changes, periods, etc.... they don't have to 'drug' everything to death. E isn't nearly as big of a nightmare if someone would just LISTEN to how I feel when I"m on the meds.

If this guy gives me any defensiveness tomorrow, I'm out of there- mid appt.

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Old 10-03-2007, 10:08 AM   #2
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Re: See neuro tomorrow- gonna beg off Topa

Good luck! Tripp was on that and his hand and feet would tingle like crazy. He was not able to tell me but he would take his shoes off and rub his feet and rub his hands together too.

Old 10-04-2007, 09:34 AM   #3
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Re: See neuro tomorrow- gonna beg off Topa

I'm so sorry you've had such a difficult time w/the TOpa. It is a difficult adjustment, as I warned! The first two months are hell on wheels. My sister takes a small dose for migraines and she almost gave up on it a few times but she's glad she didn't. Every titration I had was not pleasant but it did get easier once I got up to my current dosage (400mgs.) However, I understand you're on lots of other meds so this just may not be the one for you as sometimes certain meds just don't play well with others.

Again, I'm sorry you've had a terrible time. Make your doctor listen to you. My epi. doc got so mad at me when I refused to go on Carbatol that I thought he was gonna drop me. Hey! It's our bodies, right?! Good luck tomorrow, let us know how it goes!
I have adult-onset epilepsy. I am here to answer any questions, offer hugs or whatever you need to the best of my disability.

Old 10-04-2007, 11:16 AM   #4
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Re: See neuro tomorrow- gonna beg off Topa

Dogmom, EXACTLY. You can just about dictate what you want done (within reason) to your Dr. When the last Dr I saw for ONE visit recomended a high risk med and talked about taking me off a med that has been working I was stunned. The only item we agreed on was the slight reduction of Topa (50mg).

When I did my research on that med I was in shock. I even called up my old Neuro and HE said he would never have placed me on that or suggested placing me on it. He made the comment it was good I did my research again. I'm glad I have a new Neuro now.

No. You are not a dog on a leash. They may have the training, but if you are uncomfortable with what seems like a drastic change, object to it. I had to nearly force my clinic to do bloodwork for med levels. Most patients avoid that.

You can even bring up suggestions if you have any in your head. See what they say about that. However try to keep a level head.


Old 10-04-2007, 04:34 PM   #5
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Re: See neuro tomorrow- gonna beg off Topa

I understand exactly how you feel. I was so zoned out I would literally be in job interviews and mid-sentence, stop and go "uhhh, what did you just ask me?". They looked at me like I was insane. I too lived alone in Los Angeles and my friends even noticed the change in me. I BEGGED my neuro to take me off the max and she refused to help me go on another patient assistance program. Not only that but she insisted that ALL drugs would make me dumb and encouraged me to go on disability. Then she gave me a script for Exelon which is what they give to people w/ Alzheimer's. Things got so bad, I left LA, live w/ my mother. I am now off the max, on Keppra and can at long last function although I must say that I still feel maxed out at times. The pharmacist told me it takes 3 weeks till it's completely out of your system. I weened off it for 2 months and took my last pill two weeks ago. I hope I fully recover.

Hang in there, be strong and tell your doctor to switch your meds. Remind yourself that it's temporary and it will be over soon (that's how I got through it).

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