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Old 09-01-2002, 12:08 PM   #1
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Krista2882 HB UserKrista2882 HB User
Question Tegretol Question

Hello.
I have a question- for those of you who take Tegretol (the regular stuff. not the time-release one)- how many milligrams per day do you take?

because my doctor was kind of surprised that I took 800 mg a day. he said that was pretty high. he said there is a variation, and some people need more, depending on their metabolism, but he was kind of surprised that I took so much.
And then I saw my new Neurologst on Friday, and I was telling him that I'm still having some small seizures once in a while, and he checked the results of my bloodwork that I just had done a couple days before, and he said there was enough room to take more. So he wants me to go up to 1000 milligrams a day, and see if that helps any.

So I was just curious how much you guys take- those of you who are on Tegretol. I wanna know how abnormal I am. lol.

thanks!

~Krista
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Old 09-01-2002, 12:49 PM   #2
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Krista, I took both Tegretol and the XR. The chemical in both is the same so the dosages (milligrams per day)would be the same. They differ in the number of pills needed to get that dose because of the way they are dispersed in the system. The regular Tegretol is adsorbed faster than the XR so more daily doses would be needed to keep a consistent level. Anyway, the maximun dose as set by the company that makes it is 1,200 mg a day for people over 15yo. In rare instances the doc can push it to 1,600 a day. My Epileptologist did push it to the 1,600, and I was on Lamictal at the time was well. Prior to my seing an Epileptologist, the general neuros kept me on Tegretol when it was not controlling my seizures, but was harming the quality of my life with the side effects as well as the seizures. I do not now if you are seeing an Epilepsy Specialist, epileptologist, who sees Only epilepsy patients or not. but if your doc does not provide you the best methods available to control your seizures as well as increase the quality of life. Please seek the care of a good Epileptologist at a patient oriented Comprehensive Epilepsy Center. NOT one that is research oriented. You'll be a lab rat! I have been there, too. I have had surgery since the pushing the Tegretol didn't work either. Too much meds can cause seizures as well. I found Keppra and Lamictal to be better for me (Complex Partial) as far as side effects and control go. The right drug is very individual and depends on how well it works, controls/stops your seizures, as well as how it affects the quality of your life. The level, number, is secondary as long as it is within a safe range. Please check into locating a good Comprehensive Epilepsy Center. Remember that they are not all the same. Read the thread called how to Find a Doc or Facility on the Cleveland Clinic website if it is still posted here. You can also go to the C.C. website and read it there if it is no longer here. It is invaluable information! I am grateful that they posted that information for the Public to read. Tattoo

Addendum: I want to add that I see the pushing of the Tegretol to 1,600 mg as a last ditch effort on part of my then doc. I became toxic on that high dosage and had crossed vision and loss of balance. Memory was terrible as well as an increase in the other side effects i had always had while on Tegretol. I realize why he pushed it, but it only makes good sense to me that if a particular chemical compound does not show some signs of improving the situation, I do not see that more of the same thing would be better. That does not even make sense. Even so, I see why he pushed my med. In THEORY, it may better to try it and see before going on toward surgery, but the costs to quality of life have to be strongly considered and right up there with seizure control. No doubt! There is no room for a trade off! If Tegretol is showing little evidence that it really is very effective, another drug, not more of the same would be the way I'd go especially if the upper parameter of 1,200 has been reached. Playing with meds can waste Quality of Life. Tattoo

[This message has been edited by Tattoo (edited 09-03-2002).]

 
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Old 09-01-2002, 01:47 PM   #3
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i took 700mg a day. however, i know someone that takes 1200mg a day. he does just fine. he does a a few small seizures now and then (once a month). he has tried everything else and that what works for him.

good luck.

 
Old 09-01-2002, 07:24 PM   #4
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Elleigh, The way I see it is that since the real goal is NO seizures, if your friend is still having seizures once a month, then the goal has not been reached. He is not controlled and those once a month can worsen. Also, I also took 1,200 mg Tegretol before I got to the 1,600mg and the side effects of Tegretol at any dosage can really harm quality of life, especially if the drug is not reaching that goal of No seizures. If seizure activity continues to occur, that is not fine. Tolerable maybe, but not fine. Tattoo

 
Old 09-02-2002, 11:59 PM   #5
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Krista, you are normal it is not so bad as you think for taking a lot of medication or high dosage. I used to feel the same way as you do, even sometimes today if my seizures are not under control and my doctor would first suggest that we raise the dosage from two to three keppras at night that I wouldn't be so happy about it. One time, I decided to take it into my own hand and said "no" I wanted to stay on the same dosage and see how it goes for a while. Surely, he was right. I ended up having 5 seizures in 3 days and was rushed to the ER. I went on the dosage he gave me 3000mg keppra and 1600mg of Tegratol XR, and my seizures were more controlled. I still have some seizures now, but that is something I have to take responsibility for because I do drink on occasions and stay up late on some weekends. Until i control that habit, I can't criticise my doctors choice for my wellbeing. You have to have some faith in him and just like tattoo said, just as long as he is not a part of a research practice, your in good hands. Your doctor is only trying to help you with the best options and that is to stick to the med your with and not give up on it too soon. You will never know how well that medication could work on you until you tried all options. GOOD LUCK!

AngelDust :angle:
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Old 09-05-2002, 03:03 PM   #6
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Hi. I started having small siezures after a nasty blow to the head with a hockey stick when I was about 12yrs old. My doctor suggested that I could take tegretol. I took 400mg twice a day. I hated taking these drugs as I suffered mood swings and they supressed my imagination. When I deceided to stop taking them I felt so much happier and more free. Now at 19, I am trying alternative medication (homeopathy) , which, I think is slowly healing the problem, hopefully stopping it for good.

 
Old 09-05-2002, 08:04 PM   #7
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Angeldust, I noticed that you are taking 1,600 mg of Tegretol. How is your mentation and memory on that high a dosage? The upper limit established by the Pharmaceutical company that makes it says that the upper parameter for an Adult is 1,200 mg a day. I realize that it can be pushed to just abut whatever the doc wants to push it to, that does not mean that it is safe. I has crossed vision and a loss of balance on that high a dose. Those are Toxic symptoms. I was wondering that since you are on the 3,000 Keppra too, seems like your doc may have suggested a lowering of the Tegretol down to recommended doses instead of the toxic dose. Too much meds can cause seizures. When i got to those levels of meds without complete control of seizures, I had surgery and take only Keppra now. I was toxic on Tegetol when I went into the hospital too. How are you functioning? Working etc on that dose and the Keppra? Tattoo

 
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