My name is Lisa. I can't believe there's a group of people who I can reach out to that know the hell I live with. I was diagnosed about RLS & PLMD about 25 years ago. I was 32. I've had 3 sleep studies done. I guess as with everyone, it was a bunch of trials and errors with the drugs at the beginning. Eventually settled on Carbo Dopa Liva Dopa and mirapex and trazadone. Found out the dangers of the CDLD just before the 5 yr mark. Stopped it and went through INSANE physical withdrawals. Progressively weaned myself off the trazadone. I don't know how. I switched to diphenhydromine Just this week realized that the Mirapex was also a DA and doing the same things to my brain. It's gradually starting to work less and less too. I'm all for weaning off of it but I have to have something in it's place. I can't go cold turkey. I understand the need for a baseline too but there's no way I can go for weeks without sleep and then have withdrawals and . . . I don't even have a GP who knows how to care for me. I just moved, I have garbage insurance. I'm in the Davnenport, IA/Moline, IL area. Does anyone know a team of medical specialists in the area that know how to do with this??? And to all of you who have the compassion to help us who are here for help, GOD BLESS YOU!
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Leeserann
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Welcome to the forum. You will find lots of help, support and understanding here.
Ropinirole and pramipexole (Mirapex) are no longer the first-line treatment for RLS, gabapentin or pregabalin is. 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.
First off are you on the slow release pramipexole . The slow release ones usually have ER after their name. If so reply here because the instructions for coming off them are different.
To come off Mirapex by half of a .125 tablet) every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. 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.) 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 Mirapex 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? If so what was it? That is the first thing a doctor should have done. 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...
Meanwhile 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, 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.
I have to head out, but, very quickly, STOP the diphenhydromine! All sedating sleep aids containing this will worsen RLS.Trazodone is safe for RLS.
Get off Mirapex by reducing half a 0.125mg pill every 2 weeks.
Get full iron panel blood tests and raise serum ferritin above 100, preferably 200ųg/L via pills every other night or an IV iron infusion.
Dr Andy Berkowski operates out of Ohio and is excellent. He would help you through withdrawal and will arrange iron infusions and low dose opioids, if necessary.
Sorry I missed that you were taking Diphenhydramine. Joolsg is right that it makes RLS worst for most. Why did you stop trazodone ? If you had problems on it you can try Wellbutrin, an antidepressant that is the other one that is safe for RLS besides trazodone.
As far as possibly locating a doctor, I need to know whether you live in Iowa or Illinois as doctors can't prescribe for you if you don't live in their state.
I noticed on the AASM video that Joolsg posted today, they recommend against using bupropion (Wellbutrin). Any idea why? I tried it briefly and found it worsened my RLS, but I think I'm in the minority. Does that just leave trazodone?
I have no idea why. That doesn't make sense. The only other one which is less recommended is desipramine. There are a few others but have side effects like liver toxicity or not approved in the US because trials haven't shown effective
You're AMAZING!!! Thank you so much!!! I did stop the diphenhydromine as it seemed after a full year on it that I very suddenly became in intolerant to it. My balance became really unstable when I got up to go to the bathroom at night. I just stopped taking it and to my surprise was able to sleep anyway. I was extremely surprised because I haven't been able to sleep without medication for YEARS. So I haven't had a sleep aid for well over 6 months. I'm thrilled because the trazadone just made me slow and stupid in my mind. They had me on FAR too high of a dose and I couldn't function at work. I progressively reduced it from 300 mg to 75 and then was on the 75 for years. Now I take nothing but blood pressure meds and mirapex. But the kicking has gotten worse. If I don't take it a full 2 hours before bed, I suffer. If I remember, I'm ok. I am not at all familiar with pregabalin. I've also heard/seen people referring to opiod. As if they weren't speaking about a class of drug but a new drug altogether. Did I mis understand? My father took gabapentin for neuropathy but that's pain - I don't have pain. I am completely baffled and am sure I'm one of MANY who are, by the fact that one person has an "urge to move", while others experience, "a creepy, crawly feeling" and I experience what I'd describe as a builiding of an electrical impulse that involuntarily fires - a little like static electricity. I have NO control whatsoever when it jerks and I always get a fantom pain or stab of pain on one side or the other before it starts and then the side I got the pain on is the side the kicking will start on. It can be extremely violent. It's every single night. I was completely surprised to learn that people experience this intermittantly - not every single night. So much I don't know. I just had a bunch of blood work done. For the first time in YEARS they said my iron looked good. I guess we'll have to take a closer look.
Hi and welcome. I have that exact electrical impulse that you describe. It's an involuntary movement so technically doesn't meet the criteria for RLS. I too have RLS/PLMD with PLMD the worst of the two. You've received some good advice so far. Hopefully you find a good solution.
Most blood pressure medicines make RLS worse. What are you taking?
Gabapentin is used for pain but is now the first line treatment for RLS. Pregabalin is very similar to gabapentin. In fact you can switch back and forth between them using the ratio of 6 gabapentin to 1 pregabalin.
Opioids are a class of drug.
RLS is experienced by different people in many different ways. If you don't have an urge to move, you don't have RLS but your legs moving on their own sound like PLMD. They are both treated the same way.
Yes doctors will tell you your iron or ferritin is fine but what is fine for others is not fine for those of us with RLS or PLMD so do ask.
I'm not sure about Lisinopril. It may or may not be OK as I haven't seen anything either way. Unfortunately Metoprolol is a beta blocker and most beta blockers make RLS worse for many.
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.
I came off mirapex six months ago but was unable to get relief with anything else so now I'm back on it at a lower dose. Something that helps me is to take a CBD gummy at bedtime. BTW I lived in Moline for many years. I really can't give better advice to you than you've already received. I will pray for you if you will allow.
Leeserann, I'm also new here, I'm 75 and have had RLS since my twenties. I've been on mirapex (pramipexole) for several years and I have had to increase my dose from .125 to 1.0 to barely keep ahead of it. A lady, SueJohnson, wrote me a very long and informative reply even though I was a new nobody here. I was very impressed by the effort she put into a stranger. Sue advised me of a RLS specialist in my area that I will be going to soon. You are fortunate you found this site, tremendous amount of helpful information from people who know the condition personally. Welcome!!
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