Restless Legs Syndrome (RLS) Discussion Board

Hi all,

In reading various posts, I noticed that the general opinion of Carbidopa-Levodopa is pretty low. Yet, I just saw a neurologist, who called it the "gold standard." Any idea why there is this discrepancy?

For the record, I've been on C-L for many years and have been experiencing augmentation for some time. I've increased the dosage several times, and now have symptoms earlier in the day, as well as in my arms and hands. Until a week ago, I taking up to 6 of the of the regular Sinemet (25/100 tablets) every day at bedtime.

The neurologist prescribed Sinemet Continuous Release (CR). That dose is low: once a day at 25/100. I was concerned about such a big decrease in the dose. The neurologist said it was okay and that the CR would work, but that's not the case. I've had RL all night, and I've been supplementing with one or two of the regular Sinemet tablets to get through the night.

Dr. has suggested an opioid. I'm concerned about taking that long-term. Does anyone have addiction problems with them, or need to increase dosage?

Thanks for your thoughts.
Marlene

Carbidopa-Levodopa works well to control RLS but should only be used on an occasional basis. Taken regularly it very quickly will cause augmentation as you have found out. Increasing the dosage will help but only for a short time. You will need to come off this drug. This will be very difficult and it will help greatly if you are prescribed a suitable drug, such as an opioid, to help ease your passage. You will then need to decide which medications to try to keep control of your RLS.
Not all neurologists are RLS experts.

Regarding opioids they will help greatly to control RLS. i use them myself with great success together with Pregabalin. I am not concerned for myself about any addiction issues and prefer to look upon it as dependency. If this is what I need to help manage my RLS then so be it. My life is otherwise unbearable. Once I reached the dosage required to help, it has never been increased. And indeed since stopping my anti depressant (a known RLS trigger) my required dosage has dropped slightly.

Thank you, Betty. Can you tell me, with the opioids, are you able to sit at the theater or concerts? What about car or air travel? I cannot do any of those things without extra Sinemet.
Marlene

I agree with Betty, you need to wean off the C-L. But you will need something to switch to.
I took Mirapex for 9 years and I finally had to stop it due to augmentation. Next came many drugs that did not work. Then methadone. It worked wonders. I took it for 10 years. Then came the issue of Doctors not wanting to prescrib it. Also pharmacies. I took 5 mg twice a day.
I got a Spinal Stimulator placed last Feb. It took several months, but we got it dialed in to slow my RLS. I had RLS so severe that they had turned into spasms. I still need a few meds, but I am sleeping 8 to 9 hours every night. I still sleep in shifts, but only up a short time in between.
If I have any RLS now, it's very mild and manageable.
Meds, 3 Gabapentin 1800 mg, 1 tramadol 5mg, and 1 muscle relaxant Tizanidine. Oh and 3 THC gummies.
I know that sounds like I'm still taking a lot of meds, but I am sleeping consistently. I started this nightmare in 1990.

timetraveler900 - yes I can sit in the theatre, do car trips and indeed air travel. There was a time when air travel was unbearable and I recall a long haul from UK to USA where I practically wept. If I am going to be sedentary for a long time where it would be impossible to get up and have a walk, I may take an extra pill just to be sure.

My rls meds of Codeine Phosphate and Pregabalin are my lifeline. If I recall correctly the Pregabalin was originally prescribed for peripheral neuropathy in my feet and legs and it came with the bonus of helping rls. I take a raft of other meds but they have nothing to do with rls.

Marlene, it is important to understand the difference between addiction and dependency. Addiction is a psychological need for the next high that an addict gets from taking relatively large doses of an opioid (for example, 80-100mg methadone compared to Deb's 10mg). An addict is willing to hurt family members to score that next high. But comparison, physical dependency occurs when you experience withdrawal symptoms (much like what you are starting to feel with C-L withdrawal). I don't know of anyone with RLS who would intentionally harm a family member just to get their next dose. We would rather suffer. I have seen where Blue Cross did a study years ago where they found that the probability of a patient who was screened for increased risk of addiction (including a family history of gambling and alcohol) prior to starting an opioid was 0.8%. I have also heard one of the RLS experts state that even those with higher risk can be safely managed by selecting the proper meds (Suboxone for instance) and by enlisting the help of others in the family.

My experience of taking C-L 1 day was 2 days of borderline hallucinations. Not like being sedated or high but like an out of body experience. I can’t even remember how the RLS reacted.

I got off Clonazepam over 6 months using Gabapentin which was hell. Maybe my sights were too high but I did not feel Gabapentin was working once completely off Clonazepam. Then I went through the DAs. At some point I called and told doctor whatever DA I was on was not working and I was prescribed C-L over the phone. After that, since I was not dependent on any drug at that point, I tried not taking anything for a month or two but had real bad 24-7 RLS.

My doctor never had any interest in what I found here at RLS.org and had me on 4 mg of Requip extended release. I searched for expertise in my state but found none even though every GP says they are competent in treating RLS they know little about difficult RLS. Long story short I’m back on Clonazepam. I think it was just a strange reaction to C-L for me but I can’t imagine taking C-L for years.

Not sure I added anything to the discussion but I wish you success in finding relief.