Deborah J. Ross (![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png)
deborahjross) wrote2009-11-05 06:50 pm
deborahjross) wrote2009-11-05 06:50 pm
Restless leg adventures
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.
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.
no subject
I have it, my dad has it.}:/ Mine isn't restricted to just my legs though, I get it in my shoulders and arms too.
Creepy crawlies is a good way to put it.
no subject
Are you being treated for it?
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Excedrin Back and Body seem to work pretty well for me, for now}:)
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most likely, and because it's Back and Body, it specifically targets those areas.
no subject
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).
no subject
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.
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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.
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I'm on 300 mg at bedtime, and for the last 2 nights slept so peacefully I've been able to cut way back on my other bedtime meds.
The goal -- oh hope! -- is to control the restless leg crap enough so that I can stop taking the PTDS sleep meds and sleep naturally. I've been on and off them and always sleep and dream better when off. It's always a matter of tapering and re-learning how to signal my body it's time to sleep.
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The back, btw, with which you are somewhat personally familiar (what a way for us to meet! lol - still remember that?) is slowly getting crankier and crankier with degenerative disc disease, but so far the bulging discs haven't entirely prolapsed yet. One of them is on the edge, so we're keeping an eye on it. I'm very lucky that Dartmouth's facility (about 2 hours north of us) has an excellent neurosurgeon, whom I've met -- love her -- in case that does ever happen. In the meantime ... it's back to the chiropractor for me. (Ah, a neurosurgeon who recommends chiropracty -- don't you love it!)
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Your neurosurgeon sounds like a true gem.
Disinhibition and First Day anticipation
Re: Disinhibition and First Day anticipation
no subject
While you can get too much Iron, you would have to swallow a whole bottle in one sitting to OD. The body does flush out the Iron it does not need. 28mg is harmless.
While I'm not claiming this is a miracle cure for everyone, it definitely worked for me and might be worth a try.
no subject
You're absolutely right -- low iron is one of the factors in RLS. The lab test is ferritin, which is a transfer-form of iron (as opposed to hemoglobin, which is the form in red blood cells, and hence "out of circulation"). In my case, given my age, diet, and history of having RBC iron levels consistently near the high end of normal, it's unlikely.