doctors tapering too fast?

[lindsayschu2]

Has anyone found that drs' tapering schedules can be a little too aggressive? I'm tapering off Topamax--I was at 200 a day, with Keppra (1000 a day), and my schedule was to drop 50 mg one week (and go up on Keppra to 1500), and then drop another 50 the next week. I know this is too fast for me since I'm having breakthrough seizures (one full day of mild simple partials on day 4 of the first reduction, and a whopper of a complex partial on day 3 of the next, worst seizure for me in a long time, though I decided only to go down 25 mg). I'm slowing this down--I'm feeling worlds better having gone down this much in terms of other symptoms and blessedly, my hair has stopped falling out and I dont have to eat my body weight in potassium anymore to keep other electrolyte symptoms in check. But I also don't want to have major seizures either. I'm just wondering if anyone else has noticed that doctors can tend to suggest fast tapers off these meds.

 

[masterjen]

My doctors have finally learned: the so-called standard rate for tapering off and on is typically twice as fast as what I can handle, and they/I cut that rate in half, always.

 

[SlimBlue]

+1 They usually knock me sideways, and I at least double the length now, and half the amount.

They have absolutely no idea how much these meds affect us, and most are only sold in certain sizes anyway

When my seizures changed slightly a few years ago, my neurologist suggested an increase in my Keppra. When I asked what the medical rationale was for choosing that over my Lamotrigine she admitted it was just random.

I refused, and told her if we were just playing wack-a-mole I wanted to increase my Lamotrigine first instead as the side effects aren't as bad.

She suggested a 50mg increase. When I asked her what the medical rationale was for choosing that amount, I found out that was the smallest tablet size available to be prescribed in the UK.

So I refused that, and told her I'd be increasing it by 25mg.

I then doubled the length of the suggested ramp period.

I'm still prescribed 100mgs and 50mgs for a month, I just split the 50mg tablets each day, but they're wasting loads of money each month and I end up with half my Lamotrigine 50mg tablets left over.

 

[marika853]

Bottom Line! The only one that knows Your body is YOU! It's been said here many times but bears repeating: everyone responds to medication differently, we have to figure out what is best for us.
Doctors Do Not Know It All. They just want you to think they do!
Good Luck.
M

 

[lindsayschu2]

Thanks guys--I'm going to go down by 25 mg increments for two weeks rather than 50 a week. There's definitely a medical reason they want me to go off it but I've stabilized on this lower dose and know I'm asking for trouble on this taper schedule. Just being down at 150 from 200 I feel like a new person and I think I can afford to slow it down so I'm not seizing my way through this taper. I wonder why they suggest such aggressive tapers. I was googling around last night and it seems like a lot of people on fast tapers have major problems. I found several people on the same reduction schedule as me who were taking it for migraines (no history of epilepsy) who had tonic clonics--shouldn't they take the cautious route?

 

[SlimBlue]

As I said, they usually just can't believe that such a small dosage difference can have such big effects.

I guess they must think all the reports they get back from their patients are just due to differences with those patients' systems. Or maybe many patients just accept it and don't report it.

Either way, it sounds like you've got it sussed

 

[Nakamova]

My neuro had me stop Dilantin cold turkey! Sometimes they are ridiculously clueless and we suffer as a result

I think a good rule of thumb is to taper down no faster than you ramped up, and ideally slower. Unless you need to get off a med quickly (e.g. if you are having an allergic reaction), then "low and slow" is safest. Reducing by a small increment and then staying at that level for a few weeks before making the next step is a good way to minimize withdrawal side effects.

 

[lindsayschu2]

Cold turkey!!! Ridiculous!!

I ramped up over 7 months, kind of, "Well, you had seizures, so go up 25 mgs.," and yes I'm having a medical issue (it's causing significant electrolyte imbalances), so the thought is to get me off relatively quickly. But I've learned to manage the electrolyte issue by necessity and have improved quite a bit with the 75 mg reduction so I'm seeing it as a necessary trade off. I'm going with the "reduce by small increments" plan you suggest, and staying two weeks, unless I have seizures, then I will stay longer (if I have any more severe electrolyte problems of course I'll contact my doctor). As always, thank you for your thoughts and happy birthday.