Finally on opioids and it's not working - Restless Legs Syn...

Restless Legs Syndrome

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Finally on opioids and it's not working

Anthas profile image
13 Replies

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!

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Anthas profile image
Anthas
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Madlegs1 profile image
Madlegs1

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.

Joolsg profile image
Joolsg

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.

Anthas profile image
Anthas in reply to Joolsg

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.

ChickenTwisty profile image
ChickenTwisty in reply to Anthas

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".

amrob123 profile image
amrob123 in reply to Anthas

175mg of pregabalin isn't usually a sufficient dose. The mean effective dose is just over 300mg.

Joolsg profile image
Joolsg in reply to Anthas

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.

SueJohnson profile image
SueJohnson

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.

SueJohnson profile image
SueJohnson

What was your ferritin? And why do you say 2 iron infusions didn't work? How recently did you come off the DA?

Anthas profile image
Anthas

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?

SueJohnson profile image
SueJohnson in reply to Anthas

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.

Anthas profile image
Anthas

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...

GaryHB profile image
GaryHB

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.

Anthas profile image
Anthas

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!

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