I have been taking .25 of Ropinerole

[sniel2000@yahoo.com]

I have been taking .25 of Ropinerole for about 4 - 5 years. I have had RLS since childhood. The augmentation was getting horrible...could not stand it anymore, so decided to quit taking my meds. I did not want to increase the dosage. It is now 7 months later and I have been through hell. No sleep in the beginning and finally after trying multiple things, teas, marijuana, sleeping pills...nothing worked until it took Vicodin. It helps, but wears off and again, I do not want to keep taking more. This is not a good way to live...I can't sleep through the night, although my RLS is mild compared to what it was. But I am extremely restless and wake up continually all night. I am so tired all the time...take naps. It's not as bad as it was in the beginning as I could practically fall asleep standing up. Strange going from no sleep to falling asleep all day. My interests are limited, but I feel it is getting somewhat better. I just read that possibly the damage that is done to your brain using Requip may not be reversible. I'm worried now. I wish I had never taken that medicine. It is only temporary.

I've been to two sleep doc's and they only want to give you more meds. I don't have sleep apnea. I am going to go to a good neurosurgeon (if there is one that knows about RLS) and keep trying to find answers. All I can say, is more meds is not the answer.....and I don't know if there is one. Good luck to everyone in this situation.

Restless in Napa

[Polar Bear]

It can be long hard journey to find a medication or indeed combination of medications that will provide relief and if you find a Dr that is WED aware it's like finding the pot of gold at the end of the rainbow.

Something to bear in mind - Iron levels can be a part of the condition. An ordinary blood test may show your iron levels as ok but it is your serum ferritin levels that need to be checked. Doctors often reckon that a ferritin level of 15 or 20 is normal but for us rls/wed sufferers it should be at least 100. This test is not done as a matter of course when having bloods done and you should specifically ask that your ferritin is checked. Ferritin levels tell us what iron is stored in our brain, rather than the iron that is flowing in our blood.

Also watch what over the counter medications you take, some will readily aggravate WED syptoms.

[badnights]

This is vicious disease, isn't it? Of the three classes of medication used for WED/RLS, the dopamine drugs are the worst. They're the ones that are supposedly first choice, but clinical experience over the past 15 years is causing some specialists to doubt that they should be.

The anti-convulsants can be bad for some people, but at least they don't cause augmentation and impulse control disorder, the two worst (in my mind) problems associated with the dopamine drugs. But - anti-convulsants are not effective for some people.

The opioids are typically very effective, but for some people there are side effects that make some of them un-useable.

The sad thing is that the non-medication alternatives get less effective the more severe your symptoms get, and the disease is progressive (if it's not secondary to some other problem). So eventually, a lot of us resort to medications. I suffered on dopamine drugs, but I'm OK on hydromorphone. Still kind of tired, but the symptoms are tamed.

viewsaskew made a good post recently, that maybe you can find, with a list of non-prescription substances found to be effective by people on this board (and that means effective over a period of at least weeks, not just one-night wonders). The list includes two non-prescription narcotics; iron (very important! raising ferritin levels has improved symptoms for lots of people, and removed them for some); vitamin D; amino acids (not just any, I think, they have to be certain ones).

[ViewsAskew]

Beth - is this the one you remember? viewtopic.php?f=2&t=8386&p=67773&hilit=+amino+acids#p67773 My post is at least six or seven from the top.

[badnights]

Yes, that's the one. Your link leads directly to it.