I joined this group 4-5 months ago. You guys are changing my life.❤️ No exaggeration. Your feedback and support have helped me so much in such a short period of time. I wish everyone here could also experience the positive results I've seen in the past few months. Because of the recommendations, resources and data shared, I've learned enough to:
Wean almost completely off the pramipexole (I am now officially down to .25 mg)
Switch to Gabapentin (300 mg - 2 days shy of 3 weeks)
Switched out metoprolol to propranolol (I feel so much better on this)
Take supplements and meds together and away from each other to increase efficacy
I've had all my iron blood work done so I've covered my bases and I'm literally feeling like a new person. I am less anxious and sleeping so much better. I know that the reduction/elimination of the caffeine and sugar have also made a drastic difference in the RLS symptoms, but the biggest difference seems to have been - for me personally, getting off the pramipexole. I have been on that stuff for over 25 years, and it appears that a tremendous amount of my suffering was caused by augmentation. I pray to God that weaning off of it will be enough and that I won't suffer later for having been on a dopamine agonist for so long.
All I know is that today a GOOD day. I'm so thankful to all of you for getting me to a place where I am feeling well for the first time in a very long time.
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Leeserann
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Well, I don't know that the gabapentin is working yet but I'm finding soaking in a bath of water that's at room temperature water and standing wet in front of a fan before bed cools me down enough to be able to sleep with AC on - without kicking if I stay away from caffeine and sugar. I'm also still taking the 1/4th pill of Pramipexole. Without it I'll still kick like crazy. I am blown away when I hear people say a hot bath will sooth their RLS because heat makes mine go crazy. I have a cooling gel mattress and mattress pad that aren't enough. I take a "Blood Booster" with iron bisglycinate, 1000 mg magnesium (500 A.M. & P.M.), K2 with D3 not near the iron and a bariatric multivitamin.
Interesting! The iron bisglycinate (56mg) taken on an empty stomach before bed, rids me of RLS in a little over an hour, for one night. So I must repeat every night.
Really great news. Two questions: how long did it take for you to taper the pramipexole? And what does the propranolol do for you? I'm new to Board and may need to slow taper on my own (unsupportive doc and can't get an appointment with another neurologist). Thanks!
Welcome to the forum. You will find lots of help, support and understanding here.
Propranolol is a beta blocker primarily used for high blood pressure.
First off check if you are on the slow release pramipexole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular pramipexole because the slow releases ones can't be cut.
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.
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 pramipexole 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? 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 city and state do you live in? I may be able to give you the name of a good doctor.
thank you so much for information. My doc put me on sinemet er instead of pramipexole. I am taking a high dosage ( 3 tabs daily of 50mg/200mg ). I understand now that she should not have put me on this nor ramped me up to such a high dose. So I’m looking to taper extremely slowly and understand supplemental drugs to take to get off this. I am trying to get appointment at UC Health but they say no appointments available in 2024. January 2025 opens up on July 1st. I live in Boulder but can easily travel within Colorado.
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