I don't even know where to begin because life has been such a struggle for so long. I am a 67 year old male in the USA. Going back to Nov when I was taking 275mg of pregabalin and 2mg of ropinirole I learned from this forum that I needed to get off of ropinirole. I tried but I couldn't. That's when I went on suboxone (Nov 18th). The suboxone controled my RL immediately and I was able to get off of ropinirole by Jan 6th. At this time I was taking 275mg of pregabalin and 0.50mg of suboxone and life was good. Shortly therreafter, I was able to reduce pregabalin to 175mg and all was well. Now, 4 1/2 months later the side effects from suboxone were totally out of control and unmanageable. I was tired, dizzy, chills, swets, shallow breathing, lathargic and started loosing weight because I lost my appetite. I went from 182lbs to 158lbs as of this morning. So, on Saturday night, I was instructed by my doctor, to stop suboxone and switch to gabapentin (300mg - 600mg per day). The first 2 nights (Saturday and Sunday) were my worst nights ever and I'm sure that it had everything to do with the withdrawl symptoms from suboxone. Last night was a little better. However, the gabapentin does not help at all. I have not slept in 72 hours. I have increased the amount to 1200mg (last night) and it didn't touch my RL. I got off of pregabalin because it was said to be more sedative but I'm thinking that I am going to go back to it tonight.
This forum has been incredible and I want to thank you all in advance for any advice that might be given. I appreciate all of you.
Written by
jim888
To view profiles and participate in discussions please or .
It is strange that you didn't have the side effects from suboxone until recently. Did you make any other changes - to your medicines or OTC supplements, to your diet, to your exercise or any other things? Did you increase your suboxone?
You should never stop an opioid cold turkey. You need to wean off it slowly. So I would go back on it and do so.
Both gabapentin and pregabalin take 3 weeks to be effective. Pregabalin is more likely to help help you gain your weight back so I would go back to it. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg pregabalin." However the usual maximum dose is 450 mg and you can take up to 600 mg,
Wait until your withdrawal symptoms from suboxone have settled and you have been on pregabalin from at least 3 weeks before increasing it by 25 mg every couple of days.
Depending on how long you were on ropinirole your dopamine receptors may be damaged and it may not work.
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. This is the first thing a doctor should do. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and 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. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin although it doesn't for all, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.
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.
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 a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.
Sue, I had my Ferritin Levels checked on Feb 15th. It came in at 230 and Iron Binding Saturation (not sure if that's TSAT) came in at 37%.
I started to wean off suboxone on March 20th. I went from 0.50mg to 0.40, then 0.33 and then 0.25 before I discontinued. The suboxone is not in a pill form it's a film and it's hard to reduce it by more than 0.25.
I agree with you that it's strange that I didn't have the side effects from suboxone until recently. I did not make any other changes to OTC supplements, diet or exercise. And, I never increased suboxone from the initial 0.50mg.
If gabapentin is not helping- you could consider trying suboxone again BUT ensure you have cannabis with THC ready. Cannabis stops the nausea caused by Buprenorphine and will give you an appetite.The sweats and chills can be helped with a small dose of pregabalin. But higher doses of gabapentin/pregabalin with Buprenorphine can cause respiratory depression in some patients.
It's so distressing when you find Buprenorphine stops all RLS but the side effects are unbearable.
Sue, just today I started taking something by Terry Naturally called Healthy Feet & Nerves. It offers a money back guarantee. Also, bought Magnesium Tripple Source (Magnesium Oxide, Malate and Citrate). Just wanted to let you know in case there was a reason that I should refrain.
Hi, So sorry to read of your horrendous story. It is the same old story - Doctors are NOT knowledgeable! Did your Doc really also tell you to come off one and go on to another without weaning off the original. Three docs in three different surgeries have done that to me and as a result I have tried all dopamine agonists with disastrous suicidal withdrawal symptoms.
I am now on the case and collecting evidence if I can for a legal firm. After 18 years on dopamine agonists and still had RLS and insomnia, not one doctor, until last week, has told me to WEAN off very gradually over two weeks BUT start the new one at the same time.!! So far I have amazing sleep and no restless legs! I am due to reduce again tonight so my fingers and toes are crossed. Anyway, I hope I can put a case forward for ruining my evenings and nights for so many years to the point of suicide! Good luck.
Hi d, we all seem to have similar stories. I have been on DA's for 20+ years. And, thanks to this forum, I'm off the DA's entirely. Can you tell me what you are taking now as you wean off of your DA? Happy to hear that you are doing well. Good luck tonight!
I am presently on Pramipexole 2 x 0.088 but have reduced half this last ten days and have been put on 300mg of Gabapentin at 5 pm, and then 300mg at 6 pm and the Pramipexole two hours later, that is two hours before bed. . I shall continue with G and reduce another half of Pram until I am just on a half tablet of Pramipexole. Pramipexole is lethal as body gets used to it so you increase dosage without knowing the damage and get into augmentation stage. I went up to four and still no use for insomnia and RLS. Doctors don’t advise on this or tell you you wean off the original drug which a serious mistake. Like you, I have spend years with no help whatsoever as docs dont know much about It. Now I have found doctor in Spain who has written everything down for me to follow. I am hoping it works.
Your doctor gave you the wrong advice on gabapentin. You want to take 600 mg 1 to 2 hours before bed. You can take them at the same time as the pramipexole.
Hi Sue That is a lot easier to take the lot 2 hrs before bed! instead of splitting the doses. I thought I read somewher that the body can only absorb 300 mg of Gabapentin at one time and it was best to split it an hour in between. My new doc in Spain actually told me to take 600 mg all at once but before the Pramipexole. So will go back to 600mg tomorrow. I have just made another reduction tonight, but cant sleep as have sciatica!
I'm wondering whether your problems stem from the rapid withdrawal from pregabalin. You don't say how long you had been on pregabalin, but tiredness, dizziness, chills, sweats, and lethargy are all common withdrawal symptoms. Some people experience really bad withdrawals from pregabalin that can last for months/years depending on the rate of withdrawal. That's why i always say to follow recommended guidelines and withdraw by no more than 10% of your starting dose each month. So, for example if your starting dose is 300, you drop by no more than 30mg that first month. The second month, your starting dose is 270 mg, so you drop by no more than 27mg that month, and so on.
It may not be pregabalin withdrawal, but the fact that you were okay with Suboxone to start with, and then you weren't, suggests that something else may be at play.
Whatever you do next, just do it slowly. All the best.
Yes, the rapid withdrawl from pregabalin is something that has crossed my mind. I thought I was doing a good thing. Probably not. Last night I went back to taking 200mg of pregabalin (was taking 175mg when I switched to gabapentin) and with 1/2 THC gummie and slept well. Still not feeling well today but maybe I'm so very sleep deprived that this will take time, like everything else. Thank you!
That length of time makes me even more inclined to think it's pregabalin withdrawal. But keep an open mind and reassess after being back on the pregabalin for a few days or so.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Gabapentin ineffective 
DA withdrawal progress
Advice on Gabapentin, please
This pain is unbareable 
Ropinirole and Pregablin
