Restless Legs Syndrome (RLS) Discussion Board

dgarmaise wrote:Well, I feel like I am between a rock and a hard place. My regimen of 5mg methadone and 0.125mg pramipexole (and 2mg clonazepam), all taken in the evening, is simply not doing it for me. It is usually, but not always, enough to control the legs at night. It is not enough to control them during the day if I try to lie down. And I am suffering from insomnia....

David, I don't have a suggestion, but a couple of points. First, many of us with more severe RLS feel or have felt as you do, this is a frustratingly difficult disease to treat. Keep at it, likely you will come up with a treatment plan you can live with, even though it won't be completely satisfactory. It may take many months of trying different things.

For reasons that are unclear, lots of us have inexplicable day to day variation of symptoms. I may have five days of fairly good control, then a terrible day or night. So if a treatment regimen is helping for many but not all days, don't give it up just because it is not consistently effective.

Insomnia unrelated to jumpy legs is part of more severe RLS.

Thanks, Holland. I have another question. As you know, I live in Thailand. There is a family function in Milwaukee in May that I would like to attend if my health is good enough to travel. Do you think there might be some value in seeking out an appointment with a doctor and centre that is recognized as having expertise in treating RLS, such as Dr Early at the John Hopkins School of Medicine (or John Hopkins Medicine International)? Is it even possible to see someone like Dr Early? It seems to me that one of the limiting factors would be that it would be a one-off approintment. I couldn't be followed over time because it is impractical to make the journey frequently (close to 24 hours by air). Or might he be amenable to following me by email?

Yes, if you can see one of the super RLS docs, I would. Even if it is only for a single visit. You may get some good ideas on what to try when you get back to Thailand.

David, the RLS expert who would be closest to Milwaukee would be Dr Michael Silber at the Mayo Clinic in MN. Depending upon your travel routing, another possibility would be Dr. Mark Buchfuhrer, whose patient practice is in the Los Angeles area. As I understand it, Dr Buchfuhrer's practice is primarily severe RLS patients and many of them commute to LA in order to see him. So he is familiar with the issues associated withlong distance access and also working with the patient's local physician .

Whoever you decide to try to see, you should start trying to arrange an appointment now. The demand for access to the experts is so large that new patient appointments are usually scheduled 3 or more months in advance.

David - Steve is spot on with his advice. There is no one in Chicago that I know of who can handle severe symptoms and one of our members lived in Wisconsin - he had a heck of a hard time, too.

Thanks for the tips, guys. Since a few weeks now, I have had nausea almost every day, sometimes most of the day (and night). I am trying to figure out what is causing it, and I am hoping you guys can help. I know that nausea is a side effect of methadone, but I suspect that in my case I am dealing with an interaction between methadone and another drug. The reason I say that is that my dose of methadone is low (5mg); I have been on methadone for a few months and I did not feel nausea at the outset, and I would have thought that any nausea caused by such a small dose would have worn off by now. I read on the Internet that that methadone interacts with pramipexole. Ever since I started taking methadone, I have been also taking 0.125mg of pramipexole. But in the last few weeks I have upped the dose of pramipexole to 0.25mg and sometimes 0.375mg. Has anyone experienced nausea after combining these two drugs? Another possible candidate is clonazepam. I take 2mg of clonazepam each evening. But I was taking that medicine when I started methadone and did not experience nausea until the last few weeks. I have read that people who are on methadone should not take clonazepam, but I have not seen any references to the combination causing nausea. I don't know what else might be causing the nausea. I take two medicines for hypertension and three medicines, including insulin, for my diabetes. Maybe I have to stop everything but the methadone and (a) see what happens; and (b) start taking the other medicines again, a few at a time, and see what happens. (I don't think I can stop absolutely everything... I'd have to continue the insulin and maybe one of my two medications for hypertension.)

I want to get back to 0.125mg of pramipexole, or to get off the drug, but that not going to be easy. The last time I tried increasing my methadone dosage to 7.5mg, I had nausea and other symptoms.

Sorry to be posting so often but this has been prolonged bad period for me....

Hi. I am answering own post! I think it is likely that the drug that is interacting with my methadone is clonazepam. And since that is a combination that everyone seems to agree is to be avoided. I think I should get off the clonazepam. Unfortunately, most experts recommend a very gradual tapering. And one of the side effects of clonazepam withdrawal is nausea! So, I am looking for suggestions re the best anti-nausea mediciations for RLS/WED patients, and for people using methadone. I went off clonazepam a few years ago. I went off too quickly and I had bad symptoms for a few months after. I wish I had never gone back on! Thanks.

According to "Clinical Management of Restless Legs Syndrome", most of the standard anti-nausea meds are either antihistamines or dopamine antagonists, which are definitely out since the will worsen RLS. The meds that it lists as alternatives are:

* Granisetron hydrochloride, ondansetron hydrochloride and dolasetron mesylate - all are selective 5-hydroxytrytamine receptor agonists used to treat side effects of cancer chemo
* Scopalamine patch - used to treat motion sickness and doesn't worsen RLS. (But what it would do in your case I do not know).
* Domperidone - isn't available in the US. It doesn't worsen RLS because it doesn't cross the blood-brain barrier.

Hi David, you may have already tried it but ginger is a surprisingly effective in combatting nausea. You can get it in capsule form or as a tea or just grate fresh ginger and steep it in hot water with a spoonful of honey. I don't actually know what the active substance is but have never seen ginger counter-indicated for rls. I hope you find some relief. Rachel

Many thanks, as always. I will try the ginger. I have obtained a heavy-duty anti-nausea medicine, but of course if I can do the job with natural products, that is always preferable. I saw a doctor at the local hospital about the nausea. She was not very helpful, other than to prescribe the medicine. She wanted me to stop the methadone for a couple of days to see what happens. I told her that I was already virtually certain that the methadone was part of the problem, but that it was interacting with one or more other medicines that I take. I do not believe that methadone alone is the problem. Dropping methadone is not an option for me unless I have no other choice. I much prefer to identify which medicines methdone is interacting with and then to find a way to replace those other medicines with something that does not interact. So, I am in the process of stopping and re-starting my different meds to see what happens. Already, I believe I have identified two culprits: (1) one of my diabetes medications; and (2) clonazepam. For the diabetes medicine, I have other choices. For clonazepam, I want to just stop taking it. But I withdrew from clonazepam once before, a little too quickly, and I suffered for 2-3 months. I am taking a 2mg dose at present. Various posts on the Internet suggest reducing the dose by 1/8th every week (some say every two weeks). At that rate, it will take an enternity to get off the the drug. I am hoping that by the time I get down to 1.25mg or 1mg, the nausea will go away.

One step at a time!

Best of luck, David. It is such a pain dealing with the seemingly endless difficulties thrown up by rls and the treatment drugs.

Good luck stopping it. Like you, I had a tough time stopping clonazepam. I might see if you can find a compounding pharmacy to suspend it in liquid form. Much easier to control how much you reduce it each day that way. I was in the very small minority who found I had to literally scrape off a teensy amount to reduce it. If you looked at the Ashton method, you might find a doc to switch you to Valium - it is shorter acting and easier to stop, IIRC. Too sleepy to be typing...so ignore if this doesn't make any sense.

Re nausea - at the risk of sounding very alternative-medicine-y, I have also heard that Apple Cider Vinegar can be effective in combatting it. Not sure if you can get it in Thailand though. Actually, I saw a post on another rls website that some have found it (ACV) useful for treating rls itself but have to say it has absolutely no impact on my rls. Nothing less than hard drugs works for me.

RE Nausea...I just went through a stretch of very uncomfortable stomach upset from supplements my neurologist gave me. It's a common situation with his patients and his response is always a supplement by Thorne Research called "GI-Encap." He suggested breaking open the capsules into warm water to make a soothing tea. It really really helped! I'd make a thermos of it, usually 3-4 capsules, and sip on it all day.

https://www.thorne.com/products/dp/gi-encap-reg

The other product that really helps is a bottle of straight DGL, which is one of the items in the above product. There are several versions including a sugar free option. I hope you get relief soon.

https://www.enzymatictherapy.com/Produc ... 1-DGL.aspx

Thanks for the suggestions. My first task will be to see if I can obtain these items in Thailand.