Saturday, September 4, 2010

Getting off all meds was an epic failure :(

I've seen so many doctors and no one has had the perfect answer for me, so I'm learning as I go. I really have had to experiment. After a few days without Neurontin, the pain was just too much, very distracting and makes me not a nice person.

Since I am in this apparently for the long haul, I really have to find something to help cope with the pain.

So this week:
1. Eliminated Neurontin as Doc recommended. Hmmm pain seems worse.
2. Decided to give Lyrica another shot, but I realized the trick is to take the 50 mg at bedtime, so I don't get that loopy thing where I can't drive, etc... then I take 25 mg pills in the daytime and am titrating up. You really do build a tolerance this way. Recommended dose is 150 mg/day; I'm at 100 now.
3. Because they are capsules, I had to figure out on my own how to manage the dosing schedule, and ask my Dr for two Rxs: one for 25 mg and one for 50 mg. So far, I do think I'm feeling some reduced pain in my teeth and face. (I still have to keep a Klonopin on my tongue when the burning gets to be too much, maybe 1-2x/day.)

Downsides: Lyrica is expensive - over $2/pill with insurance and there's no generic; fortunately I was given samples at the Dr's office that will last me about a month. I'm still hoping by the time I reach a year the pain will be reduced to the point I no longer need this. But no one can predict.

I've read bad things about Lyrica, but then again have read bad things about every medication, including Neurontin. I'm noticing daily headaches lately - not bad ones - not like migraines or anything. Can't say yet if it is related to the Lyrica.

A physician friend tells me he has patients who love Lyrica, and some who hate it. He tries Neurontin first, though thinks Lyrica probably works better - but it's still new on the market, no one really know a lot about it. I'm just hoping this new med continues to help make the pain tolerable without me growing a third arm or something. ;-) His opinion on Lyrica is there are risks and benefits with every medication, you just have to decide if the benefits outweigh the risks.

Hope everyone is doing well and enjoying the holiday weekend...I am spending it with family, which is always a great distraction.

Update - the headaches are gone, and so is the rain we've been having - probably more related to weather than Lyrica. The tongue still burns as the day wears on, but if I could just keep the normal tongue of mornings all through the day I'd be soooo happy. What is the secret?

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