I haven’t been here for some time, but wanted to share some news. After constant reschedules with my neurologist, I decided to search the Pittsburgh, PA area for one. I actually found an RLS specialist! Upon meeting with her, I specified my wish to get off of Requip and Clonazepam . She mentioned the new procedures here for treatment of RLS were to use Horizant, but my insurance doesn’t cover it. So, she put me on Pregabalin (I’ve already tried Gabapentin). I started the process of titrating off of the Reqiup and Clonazepam. I’ve been on the Requip for 15 years, so “all hell broke loose” the first night of dropping from 2 mg to 1 mg. The Pregabalin wasn’t helping. I went for 5 days with little to no sleep, knowing this was going to be hard, but called back for help. They readjusted the timeframe for the Pregabalin and slowed the titration of the Clonazepam. I had a fair night the next night, readjusted the timeframe I took the Requip and BOOM…no RLS! I was wakeful, but no leg problems. Not looking forward to the next step down, but I’m “in it to win it”! Oh, no augmentation from the Requip seems to be present now. I’m taking a dose of Pregabalin at 2pm, which takes care of any visible effects. One downside of the Pregabalin is swelling in my legs at night. Will discuss with the Dr in my next meeting.
Returning Nightwalker: I haven’t been... - Restless Legs Syn...
Returning Nightwalker
***I’m guessing many already know this, but sugar is definitely a contributor to RLS. I can’t eat desserts for dinner…avoid sugar altogether after 3 pm. Oddly enough, I can eat grapes! I have them I small quantities after I take my meds (especially capsules that float on top of my stomach contents or get stuck in my esophagus) as a way of weighing down those pills.
Not for everyone. I have no dietary triggers. Sugar and sweet foods as treats increases dopamine for some.
If food or drink is a trigger, then, yes it's best avoided.
Now that’s just not fair! Crazy how each of is alike and yet so different. You’ve been here a long time Joolsg. Have you found a happy medium in the world of RLS?
A complete resolution of ALL my RLS.I augmented on Ropinirole, like everyone else, and was switched to 150mg pregabalin and 25mg Oxycontin. They controlled daytime RLS but I still had very severe RLS between 8 and 10pm every night and was woken at least 3 times every night.
Then in 2020, Shumbah from Australia, posted that Oxy and pregabalin just weren't helping and she had flown to New York in desperation to see Dr Glen Brooks.
He prescribed Buprenorphine and it worked instantly.
Shumbah reported her miraculous results and, since 2020,there are now a growing number of us on here that have managed to get Buprenorphine.
I started in June 2021.
From the first night, it has stopped ALL my RLS.
So now I am trying to get it trialled and licensed in the UK so GPs can easily prescribe it.
There are possible ways around the many obstacles.
Buprenorphine does have side effects but most are 'solveable'.
Are you completely off Ropinirole now? If not, that has to be your first step. The new American Academy of Sleep Medicine Guidance relegates all dopamine agonists to 'end of life scenarios' where short term benefits outweigh inevitable longer term complications of augmentation and Impulse Control Disorder.And caffeine is another 'trigger' that many people on this forum have reported does not worsen their RLS. In fact I never had caffeine until I read that caffeine helped some members. At the time, I was suffering severe augmentation on Ropinirole and I tried caffeinated coffee. I hate coffee. But it definitely helped. So I drank coffee every day and ended up drinking 5 or 6 cups a day.
I still drink it now.
I am down (successfully) from 2 mg of ER Ropinirole to 1 mg and taking 75 mg of Pregabalin between 2 and 9:30 pm. I am set to step down to .5 mg Ropinirole tonight. Found Dr Avinash Aagarwal in Pittsburgh and she has me cutting the ER pill. Cutting in half isn’t hard, but in quarters will result in a mess and I have a request to get .25 mg Ropinirole pills and only step down to .75 mg next. It really was a difficult transition from 2 down to 1. I’m also on Clonazepam and titrating off of it. I was taking .5 mg originally and am down to 1/4 pill. I am supposed to start taking every other day for a week now, then I’m done. Last night was blissful. My ferritin was low so I’m on an Iron/C supplement every other day now. It’s been roughly 3 weeks since I first saw Dr Aagarwal and am supposed to see her around the 9th. They’re trying to fit in a video visit. Caffeine does disturb my sleep, so i stick to 3 cups before 11 am and as I mentioned before, no sugar. I’m still baffled how I can eat grapes though. I guess it’s the natural sugars vs added sugars. I’m so glad to hear that your RLS is completely controlled! It has been a long wait for you. I have to say quiet legs, arms and shoulders is equivalent to the silence that comes after listening to a wailing siren that creates anxiety throughout your body and mind. I am controlled at this moment, but expect my next step down to disturb the silence once again.
It's a shame you didn't ask here for a recommendation as there is a Quality Care Center, one of only 12 in the country at the University of Pittsburgh PA - Dr. Avinash Aggarwal is the director. If you are not familiar with the Quality Care Center check them out at rls.org. They contain the best doctors in the country. If you find you need opioids and your doctor won't prescribe them, I suggest you go there.
You should also join the RLS foundation. A membership is only $40, but they have some good information on it and you get their monthly magazine.
First off check if you are on the slow release ropinirole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole because the slow releases ones can't be cut.
To come off ropinirole (requip) reduce by .25 mg every 2 weeks or so. Ask for a prescription of these if needed. 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, Neupro 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 them but they are not up-to-date on the current treatment recommendations. Also don't let your doctor switch you to Neupro (rotigotine). S/he may tell you that it is less likely to lead to augmentation but that has been disproved.
The beginning dose is usually 75 mg pregabalin) [If you are over 65 and susceptible to falls the beginning dose is 50 mg pregabalin. Normally you would start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off ropinirole for several weeks and your symptoms have settled. After you are off ropinirole for several weeks increase it by 25 mg every couple of days until you find the dose that works for you.
Take it 1-2 hours before bedtime (you won't need it during the day once you are off ropinirole) as the peak plasma level is 2 hours.
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.. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 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.
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 up-to-date on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
On the swelling from the pregabalin, this usually isn't a real problem. I have it. Don't use a diuretic to get it down as that will make your RLS worse.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory 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, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), 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, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.
Thanks for all of this added information Sue, it is Dr Aagarwal that I found! I’m so excited you have her on record. She will only see people like me, with long-term RLS. I now know how lucky I am to have found her!
She was more aggressive with the titration of the Ropinirole than I expected, but I thought the Pregabalin would kick in more quickly. The ferritin check was done and my levels were low…75. She placed me on 395 mg Ferrous Sulfate plus C every other evening. Not sure if this is a slow beginning , but I’ve had trouble with my stomach and iron before…but was not taking it with C. I’m guessing another blood test is in store when I see her next. I am presently taking 25 mg of Pregabalin at 2pm and 50 at 9:15pm (another slight adjustment I made myself, instead of at 10 pm). From what you say, I may eventually end up on a stronger dose. Maybe she’s waiting to see how the Ferrous Sulfate works. She did tell me to cut the Ropinirole ER in half and it would then become a non-ER pill. Cutting it in half has not been difficult, but after 4 weeks she wants me to cut the halves in half. This I feel will be a problem, as they shatter and I will either get too much or not enough. I have sent a message to request my next step to be dropping to .75 mg instead of .5 and to have new medications. The Clonazepam shatters too. She had me cut that in half first and now am cutting those in quarters. I feel like a druggie licking my hand to get all of the powder, so I get a full dose. That I am less concerned with.
I do take Magnesium, Potassium and B-12, of which I read (probably on this site) might provide relief. I’m on Calcium and D3 for Osteopenia. I put myself on Biotin for hair loss. I have considered going to a Dr to get a marijuana prescription, but I am also on Zonisamide for epilepsy. I have not yet coordinated with a new Dr for my epilepsy. Apparently they have great Drs in the same department as Dr Aagarwal. Better get my rear end moving. I also take Amlodipine for blood pressure, which is well controlled.
All of your extra information will be soaked in like oil on a sunny day at the beach…thank you again!
Horizant is for someone that has RLS 24 hours which is rare except if they are augmenting on a DA.
The 325 mg of ferrous sulfate contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, but if you have troubles with your stomach I would take 50 mg to 75 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Also take Lactobacillus plantarum 299v as it also helps its absorption.
Take it every other day as more is absorbed that way as she advised, 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 (or magnesium rich foods), calcium (or calcium rich foods) 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 turmeric as it can interfere with the absorption of iron. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.
The ropinirole ER shouldn't be cut. The ER version is formulated as a 3-layered tablet with a central, active-containing, slow-release layer, and two placebo outer layers acting as barrier layers that control the surface area available for drug release. They are intended to last all day. And if you cut them you will be taking it all at once. You can't cut them so they are harder to come off of. You need to switch to regular ropinirole.
For the clonazepam you can get an inexpensive jewelry scale on Amazon for $11 that measures down to .01 gram and shave off a bit of the tablet and measure it.
Did she suggest going from 2m down to 1 mg?
She suggested cutting the 2mg Ropinirole ER tablet in half, which I balked at because of the “no cut” warning. She said it would just be like taking 1 mg of regular Ropinirole. I was on .5 mg of Clonazepam and was told to cut it in half for 1 week (which it has a line on it for cutting), then cut it into quarters for 1 week. Then I was to take that every other day for 1 week. After giving it the 5 days of sleeplessness I contacted her office and found out she was at a conference and then on vacation. Dr K (can’t pronounce or spell his last name) had me stay on the 1/4 tablet of Clonazepam nightly and move the 6 pm second dose of Pregabalin up to 10 pm with the third dose. I did that for one night with a slightly better effect and the next night, I decide myself to move the Ropinirole from 8 pm back to 7 pm and the final Pregabalin pills at 9:15. That was when I slept all night for the first time. Initially Dr Aagarwal was basing my sleep schedule beginning at 11pm, because I was staying up that late at the time for a tv show. That is not normal for me and I wanted to get back to a 10 pm schedule. I had been forcing myself to stay until 11pm! My fault in not communicating that to her. I know this was more than you just asked for, Sue. I’m not going to worry too much about the Clonazepam, other than whether it’s really time to move to every other day and quit or just stay on it for now. It’s such a tiny dose and I had a brand new 30-day prescription filled. I have plenty. The Ropinirole ER is another story. Cut in half they’re fine, but it’s time to move down to .75 mg in your’s and my opinion in two day’s time. Hopefully, she will agree to (at least) a .25mg prescription of regular Ropinirole to add to the cut ERs. One more question for you. You mentioned that Zinc hinders the absorption of iron. I have been taking 3 vitamin C gummies = 325 mg with my iron pill, just to use up the gummies I had leftover from a bout with COVID. It turns out the vitamin C has Zinc in it. I should quit the gummies then and pick up some vitamin C in a 100 mg dose, correct? I know I can buy a pill with both Iron and C, but trying to be frugal. I’ll eventually use the pill with the combination of both in it.
Clonazeoam was the first drug I used when I was diagnosed with RLS, about 25 years ago (my RLS was much milder then). It worked well for about 2 years til the doctor couldn't prescribe it, as it was a controlled substance. Then I was on ropinerole and gabapentin until 2 years ago when I was weaned off them. I was given Lyrica, which I never felt did much to help the symptoms. When I got a new doctor last April, she tried Clonazepam first, but it didn't help. I also took Tramadol, Hydrocodone, and Buprenorphine (I think there was another drug in there as well, but it's all a blur! I've been working on using up my huge leftover supply of Gabapentin for months, as that's all I've got. I sleep from 0-4 hours per night, but I take .5mg Ropinerole once a week and sleep about 6-7 hours. I see a new neurologist in late November. I'd try Buprenorphine again, at a lower dose, as I ended up in ER after taking my one and only dose back in June. I vomited til I seriously thought I was dying!!
I’m really glad to be getting off the Clonazepam, as well as the Ropinirole. I don’t much like being on anything that is even a step down from an opioid, if I don’t have to. Now that I'm seeing one of the top Drs in the country, I’m hoping she can figure out that I only needed my ferritin level raised or only need to be on Pregabalin. So far, I am successful at lowering my dosages of both the Clonazepam and Ropinirole by half or more. Praying for complete release from their clutches! Have you spoken with Sue Johnson or Joolsg? Sue has extensive knowledge of Drs in the US and Joolsg in the UK.
Hi I’m very interested as to why you want to come off Clonazepam? In my own case I've had everything else under the sun for my RLS and nothing had worked, but have been on 1mg Clonazepam now for a couple of months and find that although I still have nightly Walkabouts the quality of sleep is heaps better which just makes life a bit more bearable.
The idea with my Dr, is to hopefully be as medication-free as possible. If iron deficiency is my problem, then I won’t need any of these medications at all. The problem will have been lack of proper medical care, Ropinirole use for 15 years and augmentation on it. If titrating off all meds and adding iron doesn’t work, then Pregabalin will be my Drs drug of choice. She presently has me on a low dose, I assume in case the iron doesn’t do the job. You are quite right, that Clonazepam helps with sleep. I am having a little trouble falling asleep, where I didnt before. However, it is a controlled substance and it is better not to be on it. I would opt for cannabis to help with sleep, only if needed.
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