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Does this diagnosis sound accurete to YOU?

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Old 01-26-2005, 01:46 PM   #1
Join Date: May 2002
Location: FL
Posts: 56
guineapig HB User
Does this diagnosis sound accurete to YOU?

For those who don't know (or forgot): Temporal lobectomy, age 6. Tegretol from 6-16. Drug and seizure free, 16-26. Tegretol again 26-32. Seizures (usu. absence or petit mal) came back, about 1-3/mo.

NOW the doc tries me on Trileptal/Tegretol mix. A month on them both, no seizures to speak of . Tegretol registers DEAD CENTER inside 'Theraputic Range' (usually HAS most all of the time, even BEFORE any Trileptal mix). This has occurred from a dose of 750mg/day Tegretol, with 600mg/day Trileptal (both cut evenly into three daily doses).

I mean, a few years ago, as my weight was decreasing, another doctor was experimenting with Tegretol decrease (weight 260, NOW 200 lbs.). Today, THIS doc is willing to take medication as far as it can go before life is miserable !

And the difference we are talking: Before ANY seizures broke through, I was 190 lbs, a reasonably good diet (possibly some things still lacking), and 650mg/day of Tegretol. Now an aim for over 2000mg of drugs a day ? Heeellooo! What's the purpose of establishing theraputic ranges, if everybody wants to 'megadose ? What's wrong with this picture?

The only pieces of hard data being used is thus: The serum levels, well inside theraputic range, and personal observations shared by the patient. Based on these pieces of data, the doc wants to up this Trileptal to as much as 2400mg/day! Gee, I thought that I WAS in 'theraputic range', and WASN'T having seizures! Should the goal be to up it, as far as one can, UNTIL the side-effects show (lethargy, dizziness, blurred vision, rashes, etc.), or should it be until I don't have seizures (and mind you, the last eeg done didn't have a seizure occur in the whole 1/2 hour that it was performed, so hows THAT for accurate, empirical data to go by???)

Simply put, any piece of EMPIRICAL data would seem to not be considered (the 'theraputic level' stuff), if USEABLE at ALL (the eeg)! Is this standard practice, or could this doctor be relying upon nothing more than observational notations or 'the force' ?

The REALLY funny thing is thus: NEVER has the doctor considered that MAYBE a bad habit such as drinking lots of water with meals/pills might be affecting their digestion! (I discovered THAT here, and I'm making proper adjustments!)

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Old 01-26-2005, 03:53 PM   #2
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Join Date: Dec 2002
Location: Dayville, Ct. USA
Posts: 765
kayakmom HB User
Re: Does this diagnosis sound accurete to YOU?

I am with you that it sounds odd to push meds to the limits when your control is good!!

Quality of life has to play a big part in this decision. Hope you can get him to understand!
mom of 2 teens who have battled seiuzres.

Old 01-26-2005, 05:48 PM   #3
Join Date: May 2002
Location: FL
Posts: 56
guineapig HB User
Wink Re: Does this diagnosis sound accurete to YOU?

Well, Kayakmom, my rationale looks simple to ME, on its face: A medication 'range' has a high and a low. As long as I'm within this 'range' (say, dead center), then the medication is doing the best that it can for ME, right ?

'Range' would not SEEM to imply that the doc should go 'whole hog' until the highest number within that 'range' is achieved (or the negative side-effects, whichever comes first). Unless the high number within a 'range' involves the syrum level at which the average LAB RAT starts showing visible signs of gagging , I dunno!

Further, using this syrum level 'range' as the sole determining factor (as far as tests go) would seem very weak , as far as being empirical and thorough is concerned .

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