New treatments?

[Oldgraymare]

Has anyone tried a stellate ganglion block for RLS or TOMAC and has it helped?

[ChrisColumbus]

Welcome to the forum. You can always search for posts on a subject by clicking on Posts and putting a keyword into the 'Search posts on Restless Legs Syndrome' box. That won't always find something useful but a couple of respondents in this chain tried SGB:

healthunlocked.com/rlsuk/po...

[ChrisColumbus]

And also see this post and replies. The Noctrix Nidra device sounds promising and has some supporters but is not widely available yet:

healthunlocked.com/rlsuk/po...

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here.

Where do you live in the US? As it is only available in a few states.

It costs $7500, available by prescription and most insurances don't cover it.

You list pramipexole on your profile so I assume you are taking it and since you are asking about other treatments that it is not controlling your RLS. And that also probably means you are suffering from augmentation.

The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.

And that means you need to come off it.

First off check if you are on the slow release ropinirole (pramipexole). The slow release ones usually have ER or XL after their name. If so post back here as the advice will be different.

To come off pramipexole, reduce by half of a .088 [.125] tablet every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.

Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations. (Pregabalin is more expensive than gabapentin in the US.)

The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks. After you are off ropinirole (pramipexole) for several weeks increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.

Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin)

Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."

Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done.You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45.

If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

[Oldgraymare]

Tks for your thoughtful answer. I am 72, have been on pramipexole for many years and I'm sure I am developing augmentation. My maternal grandmother and mother had severe RLS and my two younger brothers have it too — one a mild case so far and the other moderately. I've also gained 12 pounds, which is very distressing and I suspect it has something to do with the higher dose of pramipexole (2 mg/daily). Prefer not to take gabapentin and other drugs in that class for a variety of reasons. I'm familiar with almost everything you've written hence my interest in new treatments. I'm in Maryland and have been in touch with the TOMAC people who predict their device will be available here the first half of 2024. I also have to take BP meds -- losartan and diltiazem — levothyroxine, spironolactone, a baby aspirin and Pepcid. I have not investigated whether other drugs I have to take are contributing to the worsening of RLS so would appreciate your input on that score. Ferritin level was normal but it's been a while since it was checked; I need to ask if it was a full iron panel and if not I can request one. Thanks again.

[SueJohnson]

My goodness you are on 4 times the maximum dose of pramipexole !!! Johns Hopkins is a Quality Care Center for RLS one of only 12 in the US and have some of the best doctors in the world. I strongly advise you call and see if you can get an appointment.

If you are not yet a RLS Foundation member, I urge you to join. The membership is $40, but they have some good information on it and you get their monthly magazine. It is the main organization in the US.

TOMAC will definitely help but it won't completely control your RLS.

Why don't you want to take gabapentin or pregabalin?

Losartan may or may not be OK for RLS.

Diltiazem is a calcium channel blocker and make RLS worse for most.

Levothyroxine is fine as obviously the aspirin.

Spironolactone is a diuretic and unfortunately all diuretics make R:S worse.

Pepcid is fine if you're not taking iron.

Some medicines that are safe for high blood pressure are propranolol (Inderal, Hemangeol, InnoPran) a beta blocker that may help RLS, Isosorbide Mononitrate (Monoket, Imdur) which is not a beta blocker nor calcium channel blocker. Other possibilities are: Clonidine (Catapres) an Alpha-2-Agonist used to treat high blood pressure which may help RLS and which also treats insomnia, tenex (Guanfacine, Intuniv), prazosin (Minipress) an alpha-adrenergic blocker that is also useful in managing sleep-related problems caused by PTSD and Tadalafil a vasodilator that in one study completely eliminated RLS. Clonidine can actually help RLS. Discuss these with your doctor. And then there is reducing salt by 1 teaspoon a day nih.gov/news-events/nih-res....

You said your ferritin level was normal. Doctors will say your ferritin is normal when what is normal for others isn't fine for those of us with RLS. You need to ask what it was.

[Oldgraymare in reply to SueJohnson]

Thanks Sue. My primary care physician (PCP) wasn't happy either about the 2 mg. That's prescribed by a neurologist. I'll be seeing my PCP soon and will go over everything with her. (I already restrict sodium). Gabapentin and pregabalin can impair cognition — I saw this happen with my significant other of 20+ years and think the gabapentin he was on for neuropathy did more harm than good. It also has other side effects that I'm sure you're aware of. I operate a large horse farm so I need to stay as sharp as possible in every way — physically and mentally. Again, thanks. The info you've provided is immensely helpful!

[SueJohnson in reply to Oldgraymare]

It certainly is possible to impair cognition, but that is not common, unless you are talking about brain fog which is a little more common and often switching to the other one will solve it, but I certainly can understand your reluctance considering your significant other;s experience. The only other option then is low dose opioids. I personally take gabapentin and often switch to pregabalin when it is inconvenient to take the divided doses, and at 83 have no problem with cognition.

Or once off the pramipexole you could try dipyridamole. You might want to discuss this with your doctor. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a...

[Oldgraymare]

I will look up that study! Thanks Sue!