Drug Holiday

[sniel2000@yahoo.com]

About two months ago I decided, on my own,to try the drug holiday. It was out of desperation.....the rls had gotten to a point of no return...augmentation during the day and night...crazy sensations in legs and arms....hardly sleeping. I have been taking Ropinerole for years and I was fed up with the results. The first night was the worst with no sleep but it very, very slowly got better from there....it's been two months now and I have not had rls., but I do get restlessness, but luckily I can get up and walk around and can go back to sleep. Here's the problem....my sleep has been totally messed up by taking rls medicine. For many weeks I could tell my body rythmn was completely backwards because....I lay in bed and worry that I'm going to get an attack of rls. I fall asleep without a problem but wake up worrying. I am miserable...but it's not as bad as the rls. I take one Vicoden at night to help and it defintely does, but here I go again taking medication. I am trying to wean myself of of that now by taking a half....but if I can't sleep I get up and take the other half. My doctor, like many, knows nothing about rls...I have clued her in about everything. She is now recommending that I go to a sleep study and I'm considering it, only if insurance pays. But the truth is, I believe it is a matter of time and that I will eventually get on track.

The best part about this is that I can sit in a restaurant, watch tv, ride in a car and not have to experience rls.....at least for now. It is a miracle.

This may no work for everyone, but give it a try.

Happy in Napa

[badnights]

I'm impressed that you toughed it out, withdrawing from ropinirole after augmenting. Bravo. And I'm happy you have relief now.

Note that some people think that WED/RLS symptoms include a hyperarousal, separate from the overt symptoms though they may share a common cause, and that hyperalertness can cause insomnia even when the WED/RLS sensations aren't active. You might be experiencing mild symptoms and the hyperarousal component, which are just enough to keep you from sleeping. You might be identifying it as worrying, or bad habits, when it's actually a part of the disease. This idea is not well-established in the literature, but I like it because it seems to explain my symptoms.

About taking medication, I really hope your WED goes away forever. (And mine too.) But if you end up needing to take medication, don't beat yourself up over it. It's not like you've failed. I've heard of only a few people who revert to needing no medication. It is a progressive disease, unless it's secondary to something else that you can fix, so if you need meds to have a life, when the time comes, consider the balance.

Meanwhile, I hope it continues to improve.