Restless Legs Syndrome (RLS) Discussion Board

David, sorry for your suffering.

I am glad you are getting some relief. It does sound to me like a high dose of requip. your symptoms must be way crazy. Others who know more than me will respond with advice, I have found this site to be a saviour.

After 3 days on Requip I think the Mirapex works much better for me. I'll give it 3 more days on a higher dosage but I think I'm going back.

broker,

Still having to take the Ambien to get some sleep, along with the Mirapex?
Just curious since I also take Mirapex.

I haven't taken Mirapex in a few weeks. I was put on Requip. I've taken Ambien since I have been on Requip but I'm going without the Ambien tonight since it's the weekend and I can tolerate tomorrow if I can't sleep. Just testing each scenario out until I find out what works and what doesn't.

So sorry you're suffering so badly with this disease, David. Yes, there have been people who have gotten social security disability because of this disorder, but getting SS seems very difficult. There is a gal on another forum that I frequent who helps people with the process. Here's a link to that discussion board. Here name is Carolyn Magura. http://butyoudontlooksick.com/boards/viewforum.php?f=32

With the amount of Requip you are taking, have you ever considered that you may be suffering from augmentation? You can do a forum search about augmentation; there is a lot written about it. Many of us have suffered from it. Simply put, it's when the medication, specifically dopamine agonists like Requip or Mirapex, make the RLS worse. It becomes very difficult to quit the medication, though, and most people need to switch to opioid painkillers for a while to get off of the meds. I would definitely talk to the doctor about that. You've tried a lot of meds, but there are still other options that may have less side effects.

A lot of us have struggled a long time to get the right mix of medications that work for us, but it is possible.

David, I would echo Susan's post. While I am not a doctor, the amount of REquip you are taking is very high according to the two RLS books I have. It is highly likely that the Requip itself is causing many of these problems. To start reading about augmentation, go to the "sticky" post in this section (Pharmaceutical Therapy Discussions).

Many of us have been in similar situations on Requip, Sinemet, or Mirapex. While it doesn't happen to some, those of us who have suffered through augmentation have often had a truly awful experience. Some of us, like myself, suffered for a long, long time because our doctors didn't understand it. It was only my own education here and from other reading that allowed me to take my own life back. I'm not the person I was before augmentation struck, but I can work now and RLS doesn't have the hold it did.

First, thanks for the feedback. We all seem to be in similar situations. Fortunately, or unfortunately, my neurologist also suffers from RLS. I have gotten off of Requip in the past and gone back to Mirapex. and even went cold turkey for a few days. For me, the Requip is the most effective. As for the dosage, I have been taking high levels regardless of the medication in an attempt to function and sleep. My Father had a very severe case but it was mostly treated in conjunction with Parkinsonism (sp).
With that said, I see my Doctor every six months and we have very open discussions. I will again discuss any and all options with him.

I am in the process of appling for Social Security Disability. I will keep the board updated on any changes in meds or SSD.

Thanks again for your advice.
David

I also have a neurologist who has rls and he has empathy for people that do suffer from this disorder.

I hope that you are able to find the relief that you need and please do keep us posted on what is going on; especially if you are able to qualify for social security disability.

I started the Requip pack five days ago at .25 and working up to 1.0. My doctor gave me a prescription of 5 mg Valium(diazepam) to use until the Requip dose is built up. I have been getting sleep but a couple nights I had to re-dose with another Valium. On nights I do not work next day I don't take any Valium to see how the Requip is doing. Last night I had to dose up on Valium after a half hour in bed and got to sleep. I will try the same thing tonight since I don't have to work in the morning.

All,

I am the one that takes 12.0 mg of Ropinirole (Requip) every day and 300 mg of Gabapentin (Neurontin) at night. Based on my sleep study, I was waking myself up every 17 seconds and never reached Rem level. My RLS has been throughout the day and night as long as I care to remember. The Requip works better for me than all the other drugs normally prescription. I have no side effects other than tiredness and alertness (severe) during the day. The out breaks of painful RLS is at a minimum and sleep in around 5 hours. Even though my alertness effects my ability to function at a normal level, the reduced level of pain and episodes is worth it.
There may be some amount of augmentation with the high level of medications, but my neurologist (also a RLS sufferer) thinks the relief I am achieving over extended periods of time with no major side effects is well worth staying the course. If or when condition worsen, a different regiment will be determined.
Finally, I am meeting with a doctor this week assigned by Social Security to review my case.

David

Fingers are crossed for you, David.