Remember the first time something worked?

Bjorn · Post by **Bjorn** » Wed Sep 05, 2007 3:50 am

Do you remember the first time you took something that really helped out your rls? And how great that was? And now you realize that you'll probably never get that feeling again?

A few years ago, I underwent a sleep study test to find out why I wasn't sleeping very well. The test failed because I stayed awake all night due to the rls, of course, and I was having prostate problems, too. I remember the technician was real annoyed at me because she had to unplug me several times so I could traipse off to the men's room.

Anyway, the doctor suspected rls and gave me a rx for Sinemet. It was like I'd died and gone to heaven after taking that pill. I lay in bed completely relaxed. Nothing twitched, no creepy crawlies, none of the stuff I'd had to endure for years. And then it was morning and I had actually slept all night. Man, that was great.

Two weeks later the Sinemet joined the other side and made my rls much worse, as you've probably all experienced. But I still have that fond memory of that night when something really worked.

Bjorn

Neco · Post by **Neco** » Wed Sep 05, 2007 4:34 am

I remember when I first started taking Vicodin... Everything was great; but it opened a door into a never ending hell for me now.. So I don't know..

I would give anything to get those days back.. I hate to use a cliche but how can we put a man on the moon but not find a way to combat drug tolerance.... ugh

SquirmingSusan · Post by **SquirmingSusan** » Wed Sep 05, 2007 5:39 am

Yup, the first night I took Requip. I was green with nausea, had the chills really bad, my sinuses got stuffed up - but - for the first time since I could remember my legs were relaxed. But that only lasted a couple weeks, sigh.

dogeyed · Post by **dogeyed** » Fri Sep 07, 2007 5:05 pm

Oh, yes, that first night of sleep after six months before being diagosed was heaven on earth. I, too, will never forget it. My idea about why that first relief is so memorable is because your body will never again be so thankful as that first time. Even though tolerance builds with some medication, most of them are actually working; we just forget how bad things used to be, so that first relief is a one-shot deal. I know, there's other medication that turns on you, but there are some that don't. But the first time is indeed special.

Oh, and I had the identical experience as you with the sleep test. The technician was annoyed with me, too, and I couldn't sleep. Several people have posted here about if we can't sleep, how the heck is a sleep test going to work. I should think a better test would be to put us in the hospital for a few days, hook up portable electrodes not only to measure brain waves, but also to measure electricity in our legs, muscle spasms, spinal signals, and just run it 72 hours. I'm sure the insane results would make the experts sit up and take notice of just how awful this RLS is. I also think for RLS people, a standard test of just REM sleep levels, at home, should be done yearly, since we're all screwed up from sleep deprivation, I don't care how many medicines they throw at us. I mean, if they want to test sleep apnea, that's a completely different problem from RLS, and it should not be used to confirm RLS. A simple sound recording ought to diagnose sleep apnea. Just becuz we've got all this high-tech stuff doesn't mean we should throw common sense out the window. Just my ideas, I'm no scientist.

But what is incredible to me, is that all of us know more than the doctors do, when if physicians would simply read a little every weekend as part of their duties, online and in medical journals, it would make them better caregivers. Oh, I could go on and on about the problems with our legal and health care systems, which I do not blame inadequate medicine on doctors, but I do blame the insurance companies. Since insurance pays for everything (or not), both doctors and patients are worn out, prodded around like cattle, decisions are left to clerks in Omaha, and we're all unhappy. Vote for John Edwards or at least make him Veep!

Bjorn · Post by **Bjorn** » Fri Sep 07, 2007 9:06 pm

Well, I'm thinking of participating in an RLS study in a hospital setting which involves staying there for 4 days while they run tests--electrodes, leg meters, blood draws, urine samples, an IV infusion of either iron or placebo, and a lumbar puncture (ouch). And then come back in two weeks for some follow up stuff.

I think I could handle it except they want me to not take any of my RLS meds for a week before showing up and during the study. I don't think I can do that. I'd be a total wreck.

Bjorn

Rachel · Post by **Rachel** » Sun Sep 09, 2007 12:54 am

I remember when the Darvocet first started working. I'm sure like all of you, you almost can't even put into words the relief from the exhaustion.

Rachel

malindse · Post by **malindse** » Mon Sep 10, 2007 9:41 pm

I remember the first sinamet (sp?). You're right, that first good night sleep is the best!! It was great for about 10 months. Now we're on to the Vicodin. I'm wondering how long that will work.

I've also considered doing some of the studies but I agree with you. I think I would go nuts before I got there if I had to give up the drugs for a week! Sometimes I feel like a big ole' drug addict.

SquirmingSusan · Post by **SquirmingSusan** » Tue Sep 11, 2007 5:06 am

Ya know... Those studies are horribly skewed because of the 1 week washout period. That eliminates all the people with severe RLS because not many of us would make it a whole week without taking something. So how will they ever know what works for US, especially since they don't believe US if the studies don't back us up... :roll:

malindse · Post by **malindse** » Tue Sep 11, 2007 2:58 pm

I actually called one of the studies that was being done in Albuquerque and when I told them I was already taking meds they would not accept me. That really actually very kind of them to not take someone off and make them crazy! By the way I love your "This is my brain on RLS" emoticon. Very fitting!