RLS medications

[gulliver]

I have used every product out there (except opiods) for RLS and they often work at first but then no longer work. I am currently taking 3 gabapentin (30 mg) at bedtime and then 2 more when I wake up with RLS which is often just a few minutes after I go to sleep. I am also taking 4 clonazepam tablets daily (.5 mg).,,one in the morning, one at noon and two at bedtime. I am also taking iron supplements.

The thing that used to work best was taking a hot shower with the hot water hitting the back of my spine. This worked for several months, but no longer does the job. I often do this three times during the night.

I haven't slept through the night in ages and am exhausted. When I men-tion it to doctors they don't seem very interested or briefly suggest medications I have already used. Then they quickly go on to another subject. (I think it's because they don't have an answer!)Suggestions????

[Neco]

Click my link for the Mayo clinic algorithm

You need to read it, and then find a doctor who will read it - and more than likely, who will be willing to try one or several of the different opiate medications listed as successful at treating RLS (when given in sufficient quantity at a decent dose).

Opiates work for most people 99% of the time. The problem is finding a doctor who doesn't have their head up their butt, who is actually willing to listen and learn, instead of acting like you just another Drug Seeker.


Have you tried Mirapex and/or Requip? If so how did you react? Did it work and then the symptoms got worse, and started appearing earlier and earlier? If so, that is called augmentation and especially if you augmented from both medications, this means you likely have Refractory RLS, which almost always is going to require an opiate of some kind to get any decent kind of relief.

[SquirmingSusan]

Are you seeing a sleep specialist? They would be your best bet for knowing how to treat RLS. Although many of those are only familiar with Mirapex and Requip, and aren't sure what to do when those don't work.

Clonazepam doesn't really do much for RLS for most people, but it can help with sleep. Usually what happens after you've tried the dopamine agonists (requip and Mirapex) and the anticonvulsants (like gabapentin and Lyrica), the next step is the opioids. Those work for just about everyone, but many doctors are unwilling to prescribe them, so it takes finding the right doctor.

Have you looked up the "Mayo Clinic Algorithm for the Treatment of RLS"? You can find it in one of the sticky folders at the top of the "New to RLS" section of the message board. It outlines the usual progression of medication to treat RLS. You might want to give a copy to your doctor.

[gulliver]

Have tried everything mentioned in the emails and also have the Mayo C;inic Algorithm. Nothing works. My own reasarch has convinced me I have refractory RLS and have had augmention of several of the drugs. Now where do I find a physician who doesn't want to give me ANOTHER sleep test (I have had two) and will listen to me when I indicate the tests indicate I do NOT have sleep apnea. I need a physician who does (or does not) admit he knows soimething about treating this horrible affliction.
Thank you. Sue Cassidy

[sleepdancer]

While I can't speak to your specific needs, I have had pretty good results with using a TENS Unit before bedtime. I went off the med that was becoming problematic for me and have gotten better sleep like this than with the meds except for the brief periods when I started a new med and it worked good for a while.

Do they keep bringing up sleep apnea just because you have trouble sleeping or do you have other symptoms too? My first few sleep studies only showed limb movements, not sleep apnea. Once the limb movements were calmed down, the next study showed sleep apnea. It had been there all along (based on my symptoms), just couldn't show up during the studies because my legs kept me awake too much to show anything else.

Best wishes in finding some relief so you can sleep.

[gulliver]

FYI
Saw my primary care doctor last week. When I asked if he would just glance at the Mayo algorithm he would not even touch it, much less look at it. H also threw the iron supplementsw/Vit. C. recommended by a Johns Hopkins neurologist into the trash can in front of my eyes.

All he did was increase my gabopentin doseage from 5 300 mg each to 6 for a total of 1800 mgs. daily. Of course, it has made no difference!

We must do something about this treatment.

[ViewsAskew]

Can you see the steam coming out of my ears?????????

Gulliver, that's awful...

[Polar Bear]

This doctor is so rude..... aaaaggghhhh.... I want to tell him off !!!

It makes me appreciate my own doc who takes heed of what I show him.

[badnights]

Did you take your potentially helpful C and iron out of the trash can right in front of his ignorant eyes? I hope you can get rid of him and find someone with less ego and more brain.