So after da augmentation, no results with gabapentin and two unsuccessful iron infusions I finally got a doctor to give me Tramadol. I'm aware buprenorphine is a better option and I'm pushing for that, but meanwhile, the 50mg of Tramadol is not doing anything. How long should I wait to increase the dose? Doctor said two weeks but it's been three nights without any benefits and I'm wondering if I can speed things up...
Thanks!
Depending on how long you were augmenting, what dose of da you were on ,you could be suffering DAWS for quite a while.
Meanwhile, check your iron levels, triggering medications and food triggers.
See most any answers to similar questions on this site.
Which country are you in?Tramadol often doesn't help much after augmentation on a DA.
Also, short life opioids ( tramadol, codeine, oxycodone) often cause mini opioid withdrawals during the day. For RLS, it's better to have a steady supply over 24 hours.
How did you take gabapentin and at what dose? Gabapentin for RLS has to be taken at night only, in split 600mg doses 2 hours apart. Average dose is between 1200 - 1500mg.
It takes 3 weeks at average dose to be effective.
I'm in Spain. In two weeks I've got an appointment to try to switch to buprenorphine, as For the recommendations on this forum and the info there is in it. I did take the gabapentin after tapering of DA and only up to 600 at night, but then I switched to pregabalin 175, which I understand is a high enough dose. I don't know if I should give gabapentin at 1200 a try, but given the pregabalin didn't work, I suspect it won't either. So I,m left with opioids, which is quite hard to get here given the lack of information, so tramadol is what I could get as of now... at least until my next appointment in two weeks. I also understand that the recommended dose for Tramadol for RLS is 100-200 and I m only taking 50... that's why I'm thinking about uping the dose.
You're on the Tramadol route now, it seems to make sense to try it at a higher dose first, but laying the ground work for buprenorphine. Mentioning and planting the seed. If the tramadol gives you any cognitive issues, space or high feeling then that can also be a good reason to suggest buprenorphine.Dr Winkleman said in his video on the draft guidelines that a implied supportive robust study on buprenorphine would be out shortly after the new guidelines are released (but was to late to meet be included in the new guidelines, but would have met the inclusion criteria threshold if it was published). If you do go back to gabbies, I went right upto 3600 without it being any good, but if your not spliitimg your dose into 600mg lots spaced hourly you might as well throw the balance "straight in the toilet".
175mg of pregabalin isn't usually a sufficient dose. The mean effective dose is just over 300mg.
Did you stay on 175mg for at least 3 weeks? 600mg gabapentin is too low to be effective.If you weren't on pregabalin for at least 3 weeks, you could try it again, with tramadol.
Dr Buchfuhrer often says 2 meds at low dose can be more effective than one at a higher dose.
Then, if that combination doesn't work, you can argue for Buprenorphine.
Thank you! This is very helpful as I'm switching from Ropinirole to Gabapentin and struggling with the change. The 300 mg 3x a day of Gabapentin isn't helping near as much as I would like. I will try the split dose of 600 mg 2 hours apart.
Yep, just about everyone saids comping of DA is murder. Make sure you aren't reducing your ropinirole more than 0.5 mg (ropinirole) every 3 days, not that it helps your rls but it reduces side effects from coming off to quickly . Most RLS patients require 1200 to 1800 mg of gabapentin daily, but doses up to 3600 mg daily can be used.
Gabapentin does NOT stop withdrawal symptoms from Ropinirole. I only know of around 4 or 5 people on here who have avoided hellish withdrawal. Gabapentin only starts to work around 3 weeks after the final Ropinirole dose. Once through withdrawal, you can increase the gabapentin slowly up to the average effective dose and take in split doses of 600mg 2 hours apart, at NIGHT.Your D1 receptors are all screaming out for their dopamine hit during Ropinirole withdrawal, so the RLS becomes very severe.
That's why doctors need to be trained on how serious withdrawal really is. Ideally, we should all be admitted to a safe rehab centre so doctors can monitor the withdrawal.
Most of us need low dose opioids to settle the increased RLS at each dose reduction and the 2 weeks of hell when the last dose is dropped.
I used cannabis (now legal in the UK) and I used kratom ( now illegal in the UK).
You should ask for a low dose opioid to get you through this stage.
I agree with others. The usual effective dose for pregabalin is 200 to 300 mg according to the Mayo Algorithm and the usual maximum is 450 mg although you can take up to 600 mg, so I would give it a try again. Start at 200 mg. Give it 3 weeks to become fully effective and if that is not enough add 25 mg every couple of days.
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 was your ferritin? And why do you say 2 iron infusions didn't work? How recently did you come off the DA?
Ferritin was 150 initially, 300 after the first infusion. My RLS actually got worst after the second infusion, with the first one I didn't notice any benefits. I got of DA around two years ago. I heard that after augmentation pregabalin might not work, that's why I didn't try again after my first try, I'm kind of desperate for a good night sleep at this point, and opiates seemed the fastest answer, but maybe I should give delta ligands a second opportunity....
But, is it safer to take gabapentin than buprenorphine? If buprenorphine works, should i still give pregabalin a second chance?
The main advantage is with the opioid crisis it can sometimes be hard to get it. Also it can depend on the side effects. If you didn't have any side effects that bothered you on pregabalin that would be the safer bet.
The thing is I'm pretty sure i'm going to get the buprenorphine in my next appointment, which means I may start sleeping good pretty soon. In the other hand, starting with pregabalin again means at least three weeks of sleepless nights...but if it's safer long term, i'm only 40, it might be worth it...What if i up my dose of tramadol to a 100mg tonight to see if i start sleeping good already and then start the pregabalin journey? That would make it way easier, wouldn't it?
Also, do you think it's possible that the second iron infusion made my RLS worst? It certainly feels like it...
When I said that would be the safer bet, I didn't mean it was safer long term only that if you didn't have side effects on it then it was safer in that regard because you might have side effects on the buprenorphine. Both are safe long term.
Thanks Sue, for this answer and for all the work you put in this forum! I keep reading bad things about long term use of opioids, but I guess it's more long term ABUSE of opioids... Also the buprenorphine dental problems has me pretty scared to be honest
There are a number of suggestions for this problem. Joolsg feels it is a result of dry mouth and lack of saliva. A dry mouth spray is used by some. Sugarfree gum has been suggested. Dougg has good suggestions to avoid dental problems at healthunlocked.com/rlsuk/po.... Shumbah says it should always be broken into tiny splinters and pop a little splinter under tongue at a time it is absorbed in seconds with zero residue
Hi there. I have been on the same journey as you. It will gey better! Hang in there. The people in this forum will give you rock solid advice. I am also on Tramadol. 100mg at night woks for me. I have zero rls at night with that dose. It also seems that Tramadol works best when spaced throughout the day so in addition to taking 100mg at night, I take 50mg in the morning and 50mg at lunch. It has stopped rls dead. There are some limitations which the experts in this forum will explain. I just wanted to tell you what is working for me.
Thanks! I really appreciate the advise. I'm going to up the dose to 100 and see if it works. This forum an it's people are really great. RLS sufferers would be lost without the community we have!
Hi, just an update. I upped the dose to 100 tramadol tonight, and even though I could still feel my legs moving, and it did wake me up, it was way less intense than it is without tramadol. It's like my RLS was gone and there was just a low PLMD there. I've had the best night sleep in a long time, and even my tracker agreed with that feeling. I feel that if I went up to 150 there wouldn't be any symptoms, but as I'm going to try to switch to Buprenorphine soon, i will just stay at this dose, which seems to make my RLS way more manageable.
I tried tramadol for a while after getting off pramipexole a few years ago but it did nothing for me. Went from 50mg to 150mg without relief. I think I may have been on lyrica (pregabalin) at the same time but neither helped at all. Codeine (180mg per night… a higher dosage than when I broke my arm!) didn’t help either.
Temgesic (buprenorphine) was the turning point for me. Other than relying on the dopamine rush from masturbation as a last resort, Temgesic has been the only medication that I’ve taken that helped. I’m currently taking 2X 200mcg tablets per night plus a fraction more on occasion so generally the dosage is between 400-500 mcg.
I’ve combined this with over 2 years of gradually raising my serum ferritin from 155 to 225 via iron tablets every second day and being mindful of food triggers including lowering sugar intake, no alcohol, no msg and lately food with spices, especially in the evening.
Over the past 6 months I’ve been able to include some trigger foods such as ice cream back to my diet. I’m hoping it’s the result of increasing my iron levels but can’t be certain.
The Temgesic is still a lifeline in terms of helping to control my symptoms (masturbation when it doesn’t although thankfully rarely these days) so I would definitely recommend giving buprenorphine a go.
Medical marijuana works a treat
Medical Marijuana for thecRLS or for the symptoms of nausea that Buprenorphine causes?
Both
I was on Tramadol for a few weeks and it didn't do anything to help my RLS; it only made me groggier than "normal" when I'm up several times a night, walking my rounds! I have a neurologist appointment this afternoon and am hoping she will consider Buprenorphine. Good luck to you, Anthas!
Same to you! Let's hope something wory!
Well, my Neurologist finally decided to prescribe Methadone. The pharmacist told me I would have to pay an $80 copay, which, if the drug works, I'm happy to fork over! But then the pharmacist told me the Methadone dose prescribed by my doctor was not available. He suggested I talk to my doctor about Buprenorphine instead, which I did. Last week she prescribed Zubsolv (I wonder how much money the people who make up these names get paid!?!). It wasnt available on Friday, but I was told I could yet it Monday, around noon (yesterday) I called ahead of time, and finally was told that the low-dose Zubsolv I needed didn't exist. I got back to my doctor, and she is out of office this week (and has been periodically off for a week at a time since I first saw her in April!) I wish I had time off from RLS for a week at a time! So now, I have no idea what to do! If I get 3 hours sleep a night, it's a good night!
People don't seem to know about GoodRx which I use instead of insurance. 90 tabs of 10mg methadone at CVS is $17.17. I do not think you are "forced" to use your "insurance" (otherwise known as riploff kickback to the drug companies) to buy what is prescribed. I don't; its cheaper NOT using insurance.
ON tramadol 50mg for over 22 years now augmenting and i went from 2 -50mg pills a day to over 8 a day and its still not working.
MEDICATION NOT WORKING
Tramadol works!!!!
Ropinirole not working
