Newcomer with a question

[DustyLady]

Hello....

I just discovered this place tonight, and am hopeful of finding some good information.

A little about me: I was diagnosed with sleep apnea probably 20 years ago or more. At the same time, I was told I had something called Restless Legs, which I had never heard of. I was never able to tolerate treatment for the sleep apnea, as I couldn't tolerate any kind of mask on my face. For the last several years, I've been in a remission of sorts and don't really have any sleep disturbance symptoms.

I've had problems with my legs ever since I was in college. I'm never really aware of movements at night, although the sleep studies I've had show that I do have them. They do sometimes prevent me from going to sleep, but my biggest problem with them occurs during the waking hours. Usually in the evening, but I've had them as early as 10:00 in the morning. These movements I've always described as "spasms," where my legs go into forced contraction of the muscles. These spells come and go, with days and even weeks going by with no problems, and then a spell of problems every day.

I've tried different things to try and stop these spells when they start -- walking, twisting my legs into positions they're not supposed to go, taking a hot bath, and so on. There have been times when I thought I had associated the spells with something or other, like needing to shave my legs, but then I'm proven wrong. A very long time ago, the doctor I was seeing about my sleep apnea referred me to a neurologist who gave me some pills (I don't remember what they were, it was so long ago) that basically kept me awake for two weeks without sleep. When I called the doctor's office to report this, I was talked to like I was being crazy, so I just stopped taking the pills and never went back. I've never mentioned this to any other doctor.

I do have a number of other medical conditions....bad osteoarthritis in the knees (makes walking the spasms off hard), and metabolic syndrome.

Now, my question. Has anyone found anything that works for stopping a spell when it starts? Everything I've read so far talks more about preventing the spells, which would be good as well. But what about stopping them when they do happen?

Thanks,
Dusty

[jumpyowl]

I am surprised that no one has anwered your question yet. So let me put my rwo cents worth in.

It would be important to look up the results of your sleep study. If you do not have it, you can request a copy as you are entitled to it.

Then let us look at the arousals. How many did you have and how frequently? Over 20 per hour is severe PLMD (periodic leg movement disorder). Most people woith RLS has PLMD but not everyone with a PLMD has RLS.

It would be also imprtant if you could recall the medication they gave you from which you could not sleep. Is there some way you can find out?

Yes, we all met those doctors with terrible manners (bedside or otherwise). It is a curse of the profession and I cannot blame you for never going back.

cramps are not typical of RLS and I am not sure whether that is what you have. You definitely do not have daily RLS since you have days or weeks between the occurrence.

Make sure you have enough magnesium and potassium in your blood plasma. Quinine also helps with cramps.

Lately I also have a cramping tendency along with the usual tingling feeling in my legs. I do not know if it is part of the RLS, which by the way is well controlled by Mirapex, a dopamine agonist. I also have muscle pain some of which goes away by movement, but some of it does not. The latter, however, is not so much in the legs, but rather in the lower back and hips.

[DustyLady]

Thanks for the response. I haven't been to this site in a few days, so didn't see it right away.

I found a website somewhere on this forum that listed a sub-type of RLS called Dyskinesias While Awake. That described me to a tee. What I experience is forceful (almost violent) flexions of my ankles (and extending to my feet and knees when really severe). As for the night-time movements, I know I have them because the four sleep studies I've had identified them. But I've never been consciously aware of them.

As to how many leg movements I had during my sleep studies, I don't really know if they were even measured. The 3 doctors who ordered the studies were more concerned with arousals related to sleep apnea, and with convincing me I had to be on CPAP. Right now, I tend to think that any problems I have during the night are in some sort of remission, as I don't experience sleepy spells during the day, and only wake up to go to the bathroom. But since they had to literally sedate me for me to be able to keep from having a massive panic attack when hooked up, I'm not really inclined to try another sleep study. I tend to doubt the validity of such tests when the subject is heavily sedated, anyway.

I'm also more inclined to look for a non-medical solution here. I have a long history of really bizarre reactions to meds. (And this includes herbs and/or vitamins.) So I've become leery of trying anything new, even when prescribed by a doctor.

So, I'll continue to peruse this site, and hopefully someone will have a solution that will work for me.

Dusty

[ViewsAskew]

Dusty, here are some random thoughts that may or may not help you. I noticed you said metabolic syndrome. One of our members, Jamie, is hypoglycemic and has had great luck with a diabetic type diet helping her RLS.

If your attacks are intermittant, IMHO, no reason for most meds, if any. Guess it depends on how severe and long the attack is when you have it. The Welcome All Newcomers sticky in the New to RLS? section has great links. First, in the second or third post in the sticky is some info about what to do to manage RLS before starting drugs. You may already know of or do what's listed; if not, consider trying some of those things. Jill's RLS Rebel site lists great things to do when in an attack.

Many of us just 'deal' with an attack as best we can. Unless you take a drug, and a fast-acting one, there isn't any other thing you can take to get rid of it. Some of us stretch, do yoga, or do a mentally taxing activity. All of those can stop an attack, or not . Some of us just go to sleep and it stops it! My sister does that, but it doesn't work for me.

Welcome!

Ann