I have had restless legs for 14 years I have been getting treatment from a neurologist. Started with Ropinerol cried the first time I took it because I didn't have any restlessness after the first dose. I didn't know much about it then. The doctor took some labs in the beginning iron was low so was supplementing with iron. I had already done alot of research about vit B6 which I took and iron every 3 days. After about 4 years all of a sudden it cam back with a vegeance, Dr kept putting me on higher and higer doses of ropinerole. Never discussed augmentation I found out about it and asked for change in meds. Had gabapentin made it worse. Then given praxi which I didn't realize was the same class of drugs. However that lasted for about 4 years at 4 pills in the afternoon. Then it started again. There seems to be a whole lot more research now. Anyway she ordered ropinerole again. Said I can take up to 12 o.25 pills a day if needed. She never told me to wean down praxi . Ordered iron tests but did not tell me to fast and not take supplement for 3 days. Does not make any sense. Anyway I now have a new Doctor who specializes in RLS, sleep disorders. I will see him in 2 weeks. Obviously I have many questions. I have found many meds and advice that I never knew, So my question is I have been seeing this new treatment of this device that is used at night. Has anyone tried this device Iv'e looked through quite a bit of posts which have been very helpful. Alot of your stories are exactly like mine! Thank you
New to the group: I have had restless... - Restless Legs Syn...
New to the group
You've been through the mill, and I hope that your new doctor really is up-to-date on RLS. A first step is to determine whether he follows the Mayo Algorithm:
mayoclinicproceedings.org/a...
There has been promising feedback about the Noctrix Health Nidra TOMAC system...
...but it has very limited availability to date, can currently only be supplied - on prescription - in certain areas of the US, costs $7500, and may or may not be supported by your medical insurers. (I find the price extraordinary, but understand that this has to be viewed within the context of US medical treatment costs).
Having said that, a recently published analysis by Dr Mark Buchfuhrer at al of two clinical trials concludes:
"There was no difference in TOMAC efficacy between DA-treated and medication-naïve RLS. TOMAC treatment consistently resulted in greater RLS improvement than sham control. This differs from gabapentinoids, which have reduced effectiveness following DA treatment. These results may indicate an advantage of TOMAC over gabapentinoids for refractory RLS."
(This analysis, published in May 2024 'Sleep', was sponsored by manufacturer Noctrix...)
Welcome to the forum. You will find lots of help, support and understanding here.
Where do you live? It is only available in California, Ohio and Massachusetts although it is coming soon to Maryland.
As far as what Chris said "gabapentinoids, which have reduced effectiveness following DA treatment " that would apply if your dopamine receptors were damaged after being on DAs for a long time.
Even if you get it you will still need to come off ropinirole. 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 switch to regular ropinirole as the ER or XL ones can't be cut.
To come off ropinirole reduce by .25 mg 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.
Dopamine agonists like ropinirole and pramipexole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. (Pregabalin is more expensive than gabapentin in the US.)
You say gabapentin made your RLS worse. But gabapentin can't do that. However it may have had side effects you couldn't live with. What exactly did you experience? And did you give it about a month to go way or lessen? And it won't have helped you while you were on a DA. Even if you did give it time, you might want to try pregabalin. Although they are basically the same drug except you need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other.
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 ropinirole although it won't be fully effective until you are off it for several weeks. After that 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, not just your iron? If so what was it? This is the first thing that should be done for RLS. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. 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.
Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
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, C, 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.
What is the name of the new doctor you are going to see?
Dr B's analysis that I quoted, published in May 2024 'Sleep', was sponsored by Noctrix... 🤷♂️
I'll add that on the end!
Thank you very much for the feedback. I live in California. I have Kaiser Healthcare. I’m changing doctors and going to the medical center downtown LA hoping that by an actual specialist will help. My symptoms start when I sit down for the evening in a recliner around 7. I have never had symptoms during sleep. Which this Dr they referred me too is a sleep specialist /neurologist . I’m glad I stumbled across this forum to share with people who suffer with this as I have. Thank you
If you want one of the best doctors in the world and the one who helped develop the NTX100 Tonic Motor Activation (TOMAC) System, that would be Dr. Mark Buchfuhrer 11480 Brookshire Ave #108 Downey, CA 90241. (562) 904-1101. That will be a drive for you but he does telehealth appointments so after the first appointment you wouldn't have to actually go there.
As you live in the US you may be able to be prescribed Burpernorphine this medication as totally stopped my RLS which I have suffered with for over twenty years there wasn't a name for it when I stared with this.I have been through all the medications it's been a nightmare for me but finally I have peace 0.2mcrogrms 1 tablet every 8hrs I'm in the UK many GPs won't prescribe it in the UK. This medication actually is in the US apparently it was used for drug addiction back in the 70s it's totally changed my life. I know it isn't for everyone and there can be side effects such as being sick myself I haven't had any side effects I have been taking this since June this year.It is definitely worth trying it for yourself for this is the first time in my life that I am free from the symptoms of RLS😊
Have you checked with Kaiser if they would pay for it? If not can you afford to pay for it yourself?
thankyou Sue. Good to know. At least this is the right direction. It’s very difficult to advocate and navigate the Kaiser system. Now I know what’s out there before I go. I think what happened with the gaba I wasn’t told to wean off the ropinerol so it was withdrawal from that. New Dr is Reuben Guzman-Marin. Thank you
Oh my gosh Dr Mark F in Downey is exactly who I need if this Dr can’t appropriately work with me. He also has a support group I live very close to Downey!
Dr Buchfuhrer is one of the best you won’t go wrong seeing him. 😊
Thank you
Dr Mark Buchfuhrer is a Saint. He will get you off dopamine agonists and onto the correct treatment.
Thank you and Kaiser will pay for a specialist if Kaiser doc cannot meet your needs. Didn’t know that. Thank you all for the wonderful information.
I don't know why I thought he was so far from you - I guess because the name of his practice is Stanford Health Care and Stanford is near San Francisco. That's great he is near where you are. I would cancel your other appointment.
I would cancel, however I need to go through Kaiser system first and determine that this specialist cannot help me then I can start the process of seeing an out of network specialist. But thankyou I now have all this great information and My researching to take to this doctor. Oh my ferriten level is 11. Few other things are low to so that will definitely need to be addressed. Thank you again.
That is extremely low. You need an iron infusion to bring it up. If you can't get one through Kaiser and if you can afford it I would try and get one even though you would have to pay for it. If you see Dr. Buchfuher I am sure he would prescribe it.
In the meantime: if you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness.of the blood thinners and of the iron so check with your doctor. Otherwise take two tablets of 325 mg of ferrous sulfate or 75 mg to 100 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better.
Take it every other day preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If you take magnesium, calcium or zinc even in a multivitamin, take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.
Thank you. I have been taking iron. But I was not aware of the best way to take it for max absorption. Kaiser does give iron infusions. Iron is very hard on my GI system but I will try the other iron you mentioned and vitamin C.
I was wondering what medication are you on now for your restless legs?
1500 mg of gabapentin which completely controls my symptoms.
That’s great. Thanks.
I have not seen the new doctor yet will be on the 31. I Have another concern to bring up with him. While waiting for the appt I did have to stop the requip was weaning the mirapex but symptoms were too severe. Right now taking the mirapex 2 in the morning and 2 in the evening. Seems to be working ot its the increase in Iron. My question is. I am bipolar and have been taking Lamictal which is also a seizure disorder med/ mood stabilizer. I just researched that out and gabapentin cannot be taken with Lamictal. Pregablin is also not recommended with gabapentin. Also researching gabapentin and I am finding several places that it is addicting which is also an issue with me. I want to go in prepared for my appointment, any information you have found that supports that this is the case? Thanks
Hello, Karjbee1015,
I've been a patient of Dr. Buchfuhrer for over 5 years and credit him for saving my life. He took me off of ineffectual DAs and put me on a low-dose (10mg/day) methadone therapy which is costing me only $12 per month, as I'm on Medicare. No signs of tolerance so far. Best of luck!
All this treatment is just tring to dampen down the sumptoms and not treting the cause which is probably inflammation of the nerves and this inflammation is most commonly caused by foods that you're eating. Ask for a couple of simple tests for inflammation. youtu.be/d_E4ekxzzlg?si=qK-...
I took part in and completed the study with the notrix leg device. I found it helpful only in certain circumstances. If I used it before sleep, Icould get a few hours sleep, but once it started it did not help unless I got up and walked it off first( usually about an hour). Then I could get another few hours at most. The device is only good for 3 30 minute treatments, which was not enough for me. 7500 is steep, and insurance companies at this point don’t cover it
Thanks for the feedback.
I have had RLS my entire life. I will never take prescription drugs because of side effects but have had success with medical marijuana. Just 10mg at night. I still have issues some nights.
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