I've had severe RLS for years and have been taking 2mg of Ropinirole for around the last 15 of them. I'm pretty sure I'm now suffering augmentation and after a doomed attempt to stop cold turkey (it was horrific and do not recommend), I'm now tapering down the dosage (under a neurologist) and moving to Gabapentin.
The neurologist has told me to drop .5mg per week and to see if I come off completely before starting to take Gabapentin, to confirm if it is augmentation. Well, that's not happening, I am already taking 900mg of Gabapentin due to some really bad symptoms, but I have now dropped to 1mg of Ropinirole.
I've searched withdrawal but besides everyone saying how hard it is and that's it's agony etc, I can't see any specific effects.
Mine are.. I'm soo tired, fuzzy head, miserable, back ache, muscle pains (calfs mainly), worse muscle spasms in my right arm/right torso and obviously, worsening RLS. Are these the kind of withdrawal symptoms expected around Ropinirole?
Many thanks in advance,
Shaun
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Shaunygee
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As you learned going cold turkey is not the right way. Even reducing by ,5 every week is too fast as you are also finding out. I suggest you go back up to the dose that you were last on that wasn't too bad and stay there for a several days . You should ask for a prescription for .25 mg tablets. Then 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. 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.
On the gabapentin it won't be fully effective until you are off ropinirole for several weeks. So don't increase it until then. After that increase it by 100 mg 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 Since 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. 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 1200 to 1800 mg of gabapentin ." If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin 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.
Have you had your ferritin checked? If so what was it? 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 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, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, 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, 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.
Thank you all for the help and support. At the moment the worst thing is not so much the RLS, it’s really really terrible muscle spasms in my right arm and back which jerk me awake almost constantly. This morning, besides tiredness, I feel like I’ve been run over by a bus.
Thank you Sue, I’ll follow your advice, although having suffered with RLS for over 15 years I have already tried 90% of your suggestions and paid a lot of money for any gadget, potion or lotion that could help. I’ll see if I can get hold of my doctor to get 250mg Ropinirole (although supposedly there is a world wide shortage at the moment, or that’s what I’m told when I still haven’t had my prescription filled from over a month ago) and 100mg (rather than the 300mg) Gabapentin.
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