RLS

[Frustrated]

I have had RLS for years, but unfortunately it is getting worse. I found out what it was about 3 yrs ago. I have since been to several doctors and now I am at a sleep clinic disorder center. The doctor says I have extremely low Iron and I have been on Chromagen Forte a strong iron supplement. They don't know how long it will take to get my iron levels up to the right level, but hopefully when I am this will go away. I have to believe I will get relief, meanwhile I have taken many drugs to help with the RLS. I am currently taking Mirapex, it seems to work but the last week it hasn't. I have to take a higher dose and I don't like having to increase it b/c I wonder if I will have to again.
I have also been given Ambien and Klonopin to help with sleep. I worry about addiction and long-term effects. Does anyone have any info on this. This seems to be getting a lot more publicity and I hope we all get the help we need. If you don't have it, you don't understand it

[Mprtrm]

I've been taking clonazepam/klonopin for about 2 yrs.It has helped,however I'm extremely tired.I do believe it is addictive.But it does put me into a deep sleep which hasn't happened for yrs.I saw a specialist briefly who gave me mirapex.This was about a yr ago,I think I remember it making me very dizzy.This specialist wasn't very good with followup care.I have other problems and think followup care is crucial.I am trying to find another specialist in my area.I'm still having problems,but fear the symptoms would be much worse without the clonazepam.That's bad,because I cry right now on the clonazepam,but I was wondering if the drug makes me cry too?

[ViewsAskew]

Everyone's response to drugs is varied. What works for one, doesn't work for another. The iron may help. It does help many, although it doesn't make it completely go away for most, and some it doesn't help at all.

Mirapex and Requip help many. MPRTRM, the first few days or week, in my experience, can be difficult. I hallucinated, was extremely tired, and kept waking. But when I got used to the dopamine, it settled down. I also learned that for me, I couldn't take the amount recommended to start - I had to take half of it and work up. Each time I upped it, I would get strange side effects for a few days. If you tried it for a reasonable period, certainly I wouldn't take it again. But if you tried for only a day or so, I would try at the lowest dose possible and see what happens.

Frustrated, when Mirapex stops working, a drug holiday may be in order. If you stop if for a week or two, and then restart it, it may work again and at the lower dose. The problem is finding a substitute to take during the holiday (and convincing the doctor that this is a good strategy. Some people sway Mirapex for Requip, some for Ultram. I think it's Dr Elaty that suggests drug holidays for ALL drugs used to treat RLS. Drug holidays usually prevent addiction and tolerance (needing to up the dose).

I'm of the opinion that quality of life is most important. If something works, and doesn't cause lots of other problems, do it. If you are worried about addiction, see if you can find something to swap out every few months. Benzos for opiates, for example.

OK, I know I've written a ton (my RLS is "threatening" so I can't go to bed and am trying to stay occupied), but here are my thoughts on Ambien. It makes me VERY tired, VERY quickly. But it does not stop the RLS. If you have a mild or moderate case, it may make you tired enough that you can sleep anyway. But for my severe RLS it only makes it hard to stand up and walk around without falling on my face .

Good luck to both of you.
Ann

[Mprtrm]

Thank you for your reply,Ann.I probably will make another attempt at Mirapex once I find another specialist.Meanwhile,I take clonazapam,rub my arms and legs,and shake and twist my arms and legs out of view of the public.And cry of course.

[Ridgerunner]

I have been taking Requip for over a year and it has worked great. Lately though the aching in my legs has been a problem despite increasing dose and frequency. I am thinking of switching to Mirapex to see if that helps for a while. Also, there has been talk of marijuana on these boards. I have a relative that uses it recreationally (which I hate to see him do) but I asked him for some so I could run an experiment and sure enough it knocks the aching sensations right out. However, it does not last through the night. Perhaps ingesting some before bedtime in conjunction with inhalation would be best. I only used it on like 4 out of 6 nights and it worked like a charm every time. I live in WI where it is illegal so I will not use it anymore. WI is working on a medical marijuana bill and it can't come sone enough. If it does not happen I am off to California. I am not wanting to have to rely upon opiates with the price and all. I would rather grow my own medicine some day. I am not into the whole drug culture, just here to report that this substance is out there and it was highly effective for me on the occasions that I tried it. I would really like to see some research on the subject.

[Jonah]

Hey Ridgerunner - I tried it too, and it is helping me at least for now. I'm 52, soon to be 53. I lived like many others thru the 70's, and maryjane was something I was very familiar with in my early years. But when I got a little older I quit using it. Now, after 25-30 plus years, I've tried it again for RLS. It helps alot. The trick for me though, is to NOT partake too long before bed. But rather I do it immediately before going to bed - within 20 or 30 minutes of hitting the rack. That and 3 Advil (Ibuprofin has always helped me become drowsy) and it works about 75% of the time. Usually lasts through the night but sometimes I still wake up around 4 or 5 a.m. which is fine.

I've had RLS since I was very young and it is now in my legs, arms, and torso - and I've had periods (months) where I truly thought I was going to go nuts or worse. If you've ever had it like that you understand what I'm saying. And yes, I know that maryjane is illegal most places, but it works and that is all the justification I need.

I wish you the VERY best in your quest for peace with RLS!

[IanFraughton]

I have suffered all my life, and got into the "wrong" crowd as some would say. But in truth they were just a bunch of kids having fun and soon I joined them in some "fun". At first it knocked me out for years and was able to get by on what sleep I was getting from it, but of course I am in so much pain and depressed that it became a way of life for me. I sometimes smoke 3.5 or more grams a day. This became very expensive so I had to switch to smoking the leaf which isn't as strong but takes my mind of the RLS none the less. Since I live in Canada the penalties for growing maryjane are extremely less and I have done so in the past to keep myself supplied and pay the rent and bills as keeping a job in my conditon (double tendenitis in both shoulders and wrists) isn't easy. If smoking gets you through the day/night then I'd say do so, but don't get careless and remember to try to hide it as much as possible. I can remember several times when I left the pipe on the kitchen table and only managed to "hide" it in time before guests happened to notice it.

Well good luck and I hope we all find the peace and rest we are all looking for.