Restless leg adventures

[deborahjross]

Since my 20s, I have had what I now know is Restless Leg Syndrome. At first, my doc didn't know what it was -- had to look it up in a book. It was called "tibialis anticus" or something like that. Now it's much better understood. We know it's not due to a calcium deficiency, or lack of exercise, or too much exercise, or dehydration or anything like that. Some cases are caused by low iron, not detected by your usual CBC, but requiring a serum ferritin test. In my case, it's most likely familial. Sorry, kids.

For those who've never had the pleasure of the experience, it feels like a crawling feeling under the skin, gradually intensifying and relieved only by moving the entire limb. Over the years, the episodes got more frequent, longer in duration and intensity. For a long time, there was no treatment. I'd haul myself out of bed, move around, do toe raises (I had incredibly strong calves as a result), sometimes take a hot bath. Eventually, when it was keeping me up for hours every night, I tried clonazepam (generic Klonopin), which knocked me out but really didn't do anything about the creepy-crawlies. I'd just sleep through them... until they got too intense.

Earlier this year, my doc (not the one from years ago and cities long past) and I decided to try the current therapies. As I said, we've come a long way in understanding RLS. It's a movement disorder, not muscular, so you target the central nervous system. The first line of treatment are a class of drugs called dopamine agonists. They also work for Parkinson's disease.

They worked for my RLS. Alas, they also gave me terrible insomnia, which rather defeated the purpose. We went through 3 of them, and the best result I got was 2 or 3 days of no crawlies, then a night or two of no sleep. So, off I go to the local sleep specialist.

Now I'm trying gabapentin (generic Neurontin). In research trials, it did as well as the dopamine agonists. I took my first dose last night and had not a twitch. However... both doc and pharmacist warned me I might be a little groggy until my body adjusted. Groggy is not the word. Stoned comes much closer. Apparently (according to beloved spouse) I am bubbly, talkative, and rather less inhibited socially. If this goes on, things could get interesting. I know I'm not safe to drive, so I do hope it wears off. Meanwhile, I'm ... um... enjoying life.

Comments

[ritaxis.livejournal.com]

Gabapentin, I do it.

It's a lot to get used to. In my first months on it, I was not only unable to drink wine, but I could get drunk just being in the same room as wine was being drunk. The fumes did it. I was also getting used to meloxicam at the time.

I am now taking a sixth of the smallish dose I started with, and for my particular ailment that is usually enough to make the difference. But my problem is quite different from yours: I have hand and arm nerve things due to a crushed vertebra in my neck and also carpal tunnel syndrome. So I don't know whether you will also be able to lessen your dose.

But I did get to the point where I could be in the presence of a glass of wine without sweeping the glasses off the table when I went to stand up, even befvore I started experimenting with lower doses. By the time I did that, I was doing it on a matter of principle (and economy: the insurance company doesn't know I'm taking so few of them).

[deborahjross.livejournal.com]

Thanks for the heads-up; I'll know to be extra careful. I'm already the world's cheapest drunk... about 1/4 glass of wine is about my speed most of the time.

I'm taking 300 mg at bedtime, but they're capsules, so I can't really divide them -- how does that compare to your dose? I think it comes in 100 mg as well.

[ritaxis.livejournal.com]

I started out with two 300 mgs a day and I got it changed to 6 100 mgs a day so I could experiment with it. First I dropped to 400, then 200, now 100 except when something's acting up, when I might add 100 mg.

6oo was dramatically too much for me, even after I more or less adjusted. 200 is probably optimal, but 100 makes such an incredible difference compared to nothing that I'm satisfied with it.

Remember, though, your issue is so completely different from mine that you're going to be working with different paramters anyway. I guess in both cases we're telling the nervous system to shut up already and let us get on with stuff, but in your case isn't it signals going to the muscles, while in mine it's signals coming from the limbs that we want to tone down.