Hi all, I am new to this site & look forward to learning from you ways to live with RLS.

[mobilemama]

When I was 9 my mother took me to the Dr. because I would sleep for a short period then be awake for hours. Dr. put me on phenobarbital which I took just one night. I felt wretched the next day. Fast forward 40 years to a cardiac electrical crisis (AVNRT) which led to being under cardiology care. Finally a physician believed me about my sleep disorder and started me on Clonazepam 0.5 mg. What relief!!! Sleep, blessed sleep. That was 15 years ago and my legs are beginning to keep me awake longer and longer at night. Think it is time for a dosage increase.

My main triggers are my legs becoming too warm under the sheets/covers, sitting still reading/TV for the couple of hours prior to going to bed and dehydration. As an RN I've researched RLS quite a bit, have talked with various types of healthcare providers and am frustrated to find that the medical gurus still do not have a very good handle on this problem... at all.

Do you find that stress exacerbates symptoms? My hubby was diagnosed with NH-Lymphoma Stage IV 3 years ago, has been thru chemo twice so I quit my wonderful job becoming his caregiver. He still functions quite independently, however he does have Chemo Brain which has caused some egregious lapses in good judgement with poor outcomes.

I exercise before going to bed which does seem to help some. As this tend to be a familial issue it has helped to talk to my sister, niece and cousin about their solutions. My sister walks 1 hour each evening and finds that heat is a trigger for her also.

My physician discouraged the use of Requip for RLS after the drug was approved for that off-lable use. He indicated that the adverse side-effects were not things that he wanted to see in me. As I am already on heavy cardiac medication an additional medication which 'may' slow thought processes and muscle activity 24/7 sounds terrible.

What are a few of the Positive things that are helping you, even to a moderate degree, with RSL??

[Hidden]

Alot of people find heat makes their RLS worse, me included, i sleep with my feet out of the bed covers, i also have a standing fan blowing all night at the bottom of the bed. Hot baths i find are a great relief, altho we cant sleep in the bath all night..!!

Stress can make it worse, for some people. Exercise for me, doesnt seem to help, i walk my dog every day, it doesnt make any difference. I am taking Pramipexole for my RLS, and this seems to work for most of the time, at the moment. I have also used the Neupro Patch, but got to the highest dose of 3mg for RLS, then it stopped working, so i am having a break from that one.

Look at the website rlshelp.org is one of the best sites to look at for RLS if not the best. Lots of info about RLS and what food, drink and medications to avoid, which could make RLS worse.

Another website to look at for tips and tricks is rlsrebel.com lots of good stuff on there too which could help...

[mobilemama in reply to Hidden]

Thanks!!

[Pete-1]

My main problem is Parkinsons's disease but I get a bit of RLS.. If I stop taking Pramipexole (Mirapexin or Mirapex) then my RLS is more than bad enough to be kept awake. I take Pramipexole as a PD drug so rather higher dose taken than for RLS on its own. Anyway the purpose of this comment is to ask if you have tried Pramipexole and if so how well it worked?

[mobilemama in reply to Pete-1]

Not yet. Klonopin has worked well until recently. Yesterday I cut out the caffeine - what a difference that made!!! My legs were soothingly calm all night. Now to cut out the occasional bed-time ice cream.

[daisyw]

Heat also makes my restless legs worse. When it is really bad I put my pillows at the bottom of the bed, stretch my legs until they meet the wall at the head of the bed (no headboard and an outside wall) and flatten my feet against the wonderful soothing cold, bliss. OMG the things we have to do to get some relief from this condition!!!

[mobilemama in reply to daisyw]

Will have to remember this!

[Peterpillpopper]

I was started on Clonazepem .5mg three years ago and went up to 2mg. I have tried reducing several times without success until recently I have got myself back down to 1. I been signed off work since January with depression but I have always felt that if i could sort out the RLS then everything else would improve. Clonazepam works for me but it makes me very tired. I am much better during the day on 1mg and hoping to return to work befote i am dismissed. I saw my GPs colleague today and they won't even discuss an alternative medication which is frustrating as i took the detaols of them. I really hope you don't have to increase the Clonazepam very much. Best wishes.

[mobilemama in reply to Peterpillpopper]

Me too, that's why I'm cutting out the caffeine, sugar, and salt first. Two days I stopped regular coffee... the last two nights have been bliss! I hadn't realized just how much of a stimulant even a small amount of caffeine can be.

Hoping you can keep cutting your Clonazepam dosage down a little. Life by drugs isn't our choice in life for sure!

[mobilemama]

Am thinking stress is a big trigger right now for me too.

[peterk]

Hello. I did hear that Ropinerole, only recently has been linked to possible heart problems and I was told this by a professor. I take 1mg of clonazepam in the morning for the muscle faciculations and 2mg at night. I have been on it a long time. It never gives me sleep. I find that the 2Mg tablet can help with the muscle faciculations and sensory disturbance but it's not a very good drug to increase really as it is a benzodiazepine and the body then tolerates it. I too don't respond well to excessive heat in terms of my RLS. I had to stop things like coffee because that made my RLS very much worse. Strangely tea does not have quite the same affect but I try to drink fruit teas. Like Peter says above, clonazepam is very addictive even if you don't realise it. I used to have 2mg in the morning as well but I reduced it down to 1mg. That produced withdrawal symptoms. I have like a chineseroller that I roll my feet over which helps. Massage to my limbs I do regularly with a cheap massage foot solution, hot and cold water over my legs can help too so these suggestions could help you durinfg peak periods or part of a maintenance programme. Hope you let us know how you get on and good luck with the changes.

[Hidden]

Hi, as I have mentioned in a couple of posts, do try a few days without any dairy products. I won't comment here on other medication because of your cardiac meds. Good luck.