Hi everybody! So I keep reading about people who got complete remission of RLS symptoms with opiates but the ones that are on gabapentin or pregabalin don't seem to be so lucky. There always seems to be some RLS left... Are there people here who completely got rid of RLS symptoms while on gabbas? Or do opioids always get better results?Thanks!
Total symptoms control with Gabapentin? - Restless Legs Syn...
Total symptoms control with Gabapentin?
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Anthas
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I did and many others on this forum have on gabapentin or pregabalin.
There are different forms of RLS, and depending on how one experiences RLS, you will get different reactions.
1-rls caused by low iron-- usually sorted by supplementation or infusion.
2- triggers-- can be medication or food or drink. Need a diary to try and pinpoint. Elimination will generally sort this one out. eg--I avoid raising agents and super processed foods- sulphites etc.
3- genetic RLS --- research is ongoing, but generally needs some sort of medication to calm the symptoms. Alpha2 ligands progressing to low dose opioids are the current approaches.
I'm sure someone will edit this-- and welcome, but it may help people to see how they can approach relieving their symptoms..
It is also ok to balance medication with the degree of cover. ie balancing side effects of medications with say 95% control of symptoms.
Good luck.
Opiates had no effect on my RLS whatsoever- Gabapentin reduced the extreme symptoms I get by 90%. That has been life changing for me. But it’s the old old story with RLS- what works for one, may not for the other. It’s a case of following the invaluable advice on here until you find the answer for yourself.
How interesting Marley’s. Bit do you think it is possible to have two types at same time? although not diagnosed until much later, i have had RLS since childhood, so likely genetic origin. But i definitely have food triggers also.
Certainly!
I think triggers are a major factor in RLS. Probably because they have a huge effect on my own life.
Many people who claim not have obtained full relief with medication, have not checked out completely whatever is going into their mouths.
Name the primary triggers: caffeine and alcohol. Beware of hidden triggers such as caffeine in chocolate and tea. Foods such as carbs have no effect - RLS is neurological, not gastrointestinal.
I have severe RLS and it is inherited. My mother had it and so did my mother’s sister. We also have head nodding in a yes yes as opposed to a no no. Opioids do help with this condition but Gabapentin is best. From experience it is better to avoid opioids as far as it is possible. I speak from experience.
I am in severe pain from spinal stenosis , which I have had for some years. I have had every pain killer going. I was on
Morphine tablets and very quickly found myself having to increase the dose until it was not helping. It took 6 1/2 months to come off it. Recently I stopped Tramadol and tried Fentanyl patches. Great! ……..at first but once I doubled up quite high and nothing happened so I came of those slowly too. Quite quick as I hadn’t been on them for long. I am using Tramadol now but I am not sure it is doing anything for me. I still get so much pain that it will take me all day to dust one room as I have to keep sitting down!!
Clonazepam no longer works so coming off that too. What now? Any ideas?
Gabapentin alone did not give me relief. I had to take low dose buprenorphine plus low dose gabapentin.
It's hit and miss. I still get RLS every second day. I am on 400 mg Gabapentin before in the evening. Nothing helps to get me symptom free.
That's a very small dose so I'm not surprised you aren't symptom free. My 8 year old son is on that dose.
I noticed an improvement when I went from 300/day to 900/day. But I am also on tramadol, magnesium and a very small dose (0.25 mg/day) of ropinirol.
I laughed at Mg at first, but there is definitely something going on with it.
Why are you on ropinirole, even a low dose like .25 mg when you said "Many RLS-savvy doctors refuse to prescribe a dopamine agonist and start all their patients on tramadol - this is due to augmentation."
Why not come off it? The gabapentin does not fully work while you are on a DA.
You may know this as you seem to know a lot, but in case you don't take your gabapentin 1 to 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin." Since you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason.
You may have seen this since I repeat it often and I have seen you mention some of these triggers but in case you haven't: 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.
I got approx 80% relief on 300mg pregabalin. I never wanted to increase my dose beyond that because of the side effects. Different drugs work for different people. I get terrible insomnia from opiods which is why I don't take them.
I tried pregabalin to 400mg and that didn't do anything for my severe RL. Then methadone at 7.5mg which works around 80%. I get breakthrough sometimes once or twice a night, but it's mild and I deal with it by briefly walking about or reading. Maybe more will eliminate RL but I don't like to have increased side effects. I do think those of us with genetic RLS may have other factors at play, for me that is hip oesteoarthritis (and stress maybe). The inflammation from hip problems has taken RL up many levels.
Interestingly I also have osteoarthritis in my left hip and also wonder if stress makes it worse. I took tramadol for years for my hip only 1 per day after intense workouts/long hikes and soon found it helped my RLS by taking them 1 hour before bed. My RLS has recently got worse and Dr wants me on a dopamine agonist which I’m keen to avoid. I find tumeric also helps my arthritis somewhat.
yes, it's hard to know what sets it off but I let it go on for 4 years after I developed the arthritis until I was barely getting 2hrs night sleep at night. I'd never taken any medication for my genetic RL prior even though I'd had it off and on since a teenager. But the pregabalin didn't work, hence the methadone as I'd read enough on this forum to scare me off dopamine agonists! My doctor prescribed neurophen for hip pain and that settles inflammation which in turn maybe helps ease RL just a little. I haven't tried tumeric but like you say that could be worth a try. Every small improvement is important with this awful syndrome.
Yeah I wonder if it’s related. I also have wear and tear (arthritis) in my spine as per my neurologist. I wonder if that does something to the nerves that has worsened my RLS.
Signed up for a private GP who called me today and told my concerns are completely valid re dopamine agonists and I likely know more about RLS than her and my own NHS GP. She is going to write me a letter stating my concerns are valid and refer me to a private rheumatologist who will very likely agree and let me try gabepenton or change from tramadol to another mild opiate. Ideally I don’t want methadone given the ‘stigma’ and heard it can cause weight gain? Did that affect you?
Yeah turmeric was first discovered to help horses with arthritis I believe (prob an old Chinese technique or something) hence how people now use it. I started sprinkling it over my food and then switched to capsules for convenience.
Thanks for taking the time to respond.
Nothing wrong with methadone. All the opioids have pretty much the same side effects. The advantage of methadone is you only have to take it once a day as all the others except buprenorphine usually only last 4 to 6 hours so they have to be taken that often or you get mini withdrawals. And there is no stigma taking it for RLS. However usually a neurologist has to recommend an opioid and send a letter to your GP recommending it who prescribes it and it can be difficult to get in the UK as it is red listed in many areas.
I know re methadone in the UK is associated with ex herion addicts, thing it just has bad connotations. Heard it can cause weight gain. I already get opiates tramadol but read it’s the only one that can worsen your RLS by causing augmentation so suspected that’s why my symptoms were potentially getting worse. I got a letter from my private GP but she recommended a rheumatologist private visit (unsure why not a neurologist) as she said her letter might not be enough and might just annoy my NHS GP. Thanks Sue
Then I would suggest buprenorphine. Weight gain is not commonly reported as a direct side effect of buprenorphine. It is used by I would guess by a third or more of the people on the forum.
Thank you never really heard of it will make enquiries and ask for referral to a neurologist
Augmentation with tramadol is extremely rare.
Nothing else has changed so is the only thing I could think of. I could be that extremely rare person who knows.
I have some spinal wear and tear and sciatica from time to time. I wish methadone did put on weight as I could do with a little extra...nope...no weight gain. The stigma bothered me a bit at first and I found myself explaining to the pharmacist that this was for RL. It's good to educate everyone we can that this works for RLS!
Aww you also have that, I get sciatica very occasionally it’s actually hell! Naproxen is a god send when I get it! Only thing that eventually helps! Aww that’s good to know re the weight gain, I’ve always had issues with my weight (prob more in my own head) but lost 3 stone over the last year so determined not to put it back on as lowest weight I’ve been in 5 or so years! And I agree clearly even GP’s need educated on the condition! Thank you!
Welcome to the forum. You will find lots of help, support and understanding here.
Definitely don't take a dopamine agonist. That used to be the first line treatment for RLS but no longer is because of the danger of augmentation but you know this.
Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS.
When you see your doctor ask 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. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20% and 45%. If your ferritin is less than 100 or your transferrin saturation is not between 20% and 45% post back here and we can give you some advice.
You are right to ask your doctor to prescribe gabapentin or pregabalin. (Pregabalin is more expensive than gabapentin in the US.) 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).] It will take 3 weeks before it is fully effective. 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 to 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin). 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 definitely isn't if he suggested a DA 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.
By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender.
Thanks yeah I’m really against it my private GP wrote a letter saying I shouldn’t take it and instead be offered gabapenton or the pre gabepenton (excuse any spelling mistakes 😅)
Yes I had low ferritin like 10 and after treatment went above 50 and they stopped it. After requesting twice they finally agreed to let me take it every second day as I explained for RLS you want it to be at least 75-100.
I do smoke tabacco should prob try stop it again, always struggled stopping it smoked since I was a teenager now 35. I’m also male and in the UK will update my profile new to this, got advised to join from Reddit. Also seen your quite active on Reddit for RLS like me lol!
Thanks for the other suggestions I struggle with cold showers will try persevere, I use Epsom and magnesium bath salts, take magnesium glycinate to help with sleep and use a magnesium lotion every night. Also started Celtic salt to try make sure it’s not due to a low mineral.
I take quetiepine for my mental health but Drs refusing me to come off this due to me being stable (my mental health has been best since I started it to be fair to them).
Thanks again
A safe alternative to Quetiapine which definitely can make RLS worse is Ziprasidone (Geodon)
Depending on why you are taking it, Trileptal (Oxcarbazepine, Oxtellar XR) is another safe one. As is Lamotrigine (Lamictal) and divalproex sodium (Sodium valproate, Depakote, Depakene, Valproic Acid) both of which may actually help RLS.
You might want to research these yourself and discuss them with your doctor.
Wow thank you for the suggestions your knowledge on RLS seems remarkable! If only we could all have you as a Dr to keep us right!
I’ll go do some research and speak to my Dr again next week.
I took Mirtazapine for 1 week prior to quetiapine and it made my RLS go to new extremes and it never improved after I discontinued maybe as they changed me to quetiapine.
Edited to add I take quetiapine after trying several antidepressants I’m not bipolar but psychiatrist advised I have emotional regulation issues and potentially cyclothymia or bipolar 2. But not diagnosed as I’ve never done anything erratic like ‘buy a goat’ and had stable relationships and jobs.
You seem very knowledgeable so I assume you know this but take your iron with 100 mg of vitamin C or some orange juice at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption.
If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after.
Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.
Yes I was on reddit and would have liked to stay but the moderators threatened to ban me because of long posts and posting the same information so I left.
Sorry only read half your original reply! Yes I take my iron on an empty stomach with orange juice before bed (read that was best to get it into your brain or something)
Did not know re Tumeric will bare that in mind and try stop it. I’d also been doing weight lifting after work at 11pm so that wouldn’t have helped my iron intake thanks again for this advice.
The best thing you can do for yourself is to stop smoking - now. Otherwise your smokes will kill you, and sooner rather than later.
Thanks, I know I have tried several times and failed, last time ironically as my dog got diagnosed with lymphoma, it should have really encouraged me but I was too stressed. Not a fan of vaping so that’s not an option. I will give it another go soon but smoked for 20+ years so easier said than done.
Sorry for the late reply. I have resisted all drugs for years by avoiding many foods that might upset my RLS. As I age the RLS started coming back and, eventually, I decided to try gabapentin despite the sleep specialist pushing a DA. The result has been very good with a couple of confusing aspects. I started on a low dose of 200 mg and the result was immediate full relief. No serious side-effects apart from a tiny bit of dizziness at night. The dizziness is reduced but it's still present, but well worth "enduring"
Confusing aspects I thought I should mention. These might be transitory symptoms of other things.
Two weeks and a gasostrophy has revealed hernia and a barrats esophagus so I have been taking some anti reflux tablets. I've seen a few references to GERD but I didn't realise that was acid reflux. Nizac tablets and I take a level teaspoon of sodium bicarbonate as an antacid. I know this can lead to iron deficiency but I am concerned about the short term at the moment. My doctor has agreed to an iron infusion but only enough to raise my ferritin to 200 because she thinks I am too old to go higher. It's currently about 70. She actually read the Mayo Clinic report on her day off. I intend to accept this offered infusion soon. She is confident they can do the infusion safely in their rooms and can handle any bad reactions.
On not much data I think there might be a relationship that if I stop the acid reflux at bedtime then I don't get RLS during the night. This harks back to when I was younger and I used to control my RLS by taking QuikEze indigestion tablets every night.
My RLS seems to have been replaced by ordinary pain in my lower thighs and calves. I've had this pain mildly before but now it's enough to ruin a nights sleep. It's nothing like RLS but has the same timing as the RLS, starting when I go to bed and lasting until about 5 or 7am. I also have it when I'm a passenger in a car or at a cinema. I'm almost sure it's coincidence and not related to the gabapentin. I'm experimenting with medication and about to go back onto the gabapentin to see what happens. Its hard to experiment when you only have one sample to try things on.
Anyway my current feeling is that you should give gabapentin a try at the lowest dose that works for you but don't expect a spectacular result until you have emptied the DAs out of your system.
And a foot note to all - if you have acid reflux do something about it because it might lead to esophageal cancer which has a very low survival rate. What are the recommended treatments for acid in RLS patients so we can capture our iron.
Cheers!
Just read your post. I can understand GPs not knowing everything about RLS but someone who claims to be a sleep specialist to push DAs when the new algorithm ( Mayo Clinic ) was published in 2021- seems negligent and inexcusable. Perhaps even reportable. The long term outcome is so bad with DAs - and there is a “specialist” subjecting god knows how many people to it.
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