I take 600 mg at bedtime, and I can barely sleep more than 2 hours and have also issues the whole day.
I do unfortunately augment on opioids. I tried buprenorphine which worked wonders for two months before augmenting like crazy. I then tried Targin, but it got even worse. I have now finished the withdrawal period, which was a nightmare with RLS on the whole body for 24 hours.
Anyway. I’m back on 600 mg Prebagalin with little effect as before. I don’t want to go Gabapentin as it is the same mechanism, is more difficult to take in larger doses and has the same side effects.
There is a study on alternative molecules to see what works;
“A Narrative Review of the Lesser Known Medications for Treatment of Restless Legs Syndrome and Pathogenetic Implications for Their Use”
Another one to try is dipyridamole. You might want to discuss this with your doctor. It has helped some people on this forum and another forum I was on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib...sciencedirect.com/science/a...
Take it on an empty stomach. (fats inhibit absorption) about 1-1/2 to 2 hours before bed. If you have headaches they tend to disappear or lessen after around 5 days. Coffee can counteract its effects by blocking the same receptors that dipyridamole aims to enhance.so the advice is to avoid it 12 to 24 hours before taking the dipyridamole. It is possible you could take it in the morning or it is possible you can't take it at all.
Thank you for the suggestion and article. I did research dipyridamole quite a bit. Unfortunately it is not available in Switzerland since mid 90s. I wish I could try it to see the effect. I might go to Germany to try it but the logistic is complicated, hence my idea with the molecules mentioned in the post.
Welcome to the forum. You will find lots of help, support and understanding here
I have no experience with them but they are known to help RLS. I have that article in my notes. Try them in the order you have listed. What about the 3 listed before these: clonidine, perpampanel, and ketamine?
Since pregabalin is not helping you need to get off it but you need to do so very slowly to avoid withdrawal effects. Reduce by 25 mg every 2 weeks and you should have none.
You can't augment on buprenorphine. It is common to need to increase the dose in the first year.
Have you had your ferritin checked? If so, what was it? This is the first thing your doctor should have done. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not 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, avoid a heavy meat meal the night before and 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, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, 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, fennell, low oxalate diet, a low-inflammatory 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, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), 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, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.
Thank you for all the suggestions. I'm way high on ferritin (350) and B vitamins, and D. I also take another supplements such as magnesium (3 forms), E (tocotrienols, this helps somewhat), C, K2. And I avoid a long list of detrimental food, that you mentioned too.
No other medication.
I also thought it's not possible to augment on buprenorphine, but I was wrong. It did work wonders for 2.5 month and then I had to triple and quadruple the dose within a few weeks and started having RLS in the upper body. And the dose was getting high. Same path of augmentation as with DA drugs, and 1-2 hours of sleep instead of 9 when it worked. I read a case reports of augmentation on methadone. So it is possible to augment on opioids, unfortunately. The reason I tried opioids is that I typically have 3-7 breakthrough during the day and this also affects my work.
Ketamine is also on my list. However, it mostly depends on what my doctor is willing to let me try.
I'll report again here if I find something that works.
Since pregabalin isn't working you might as well come off it but you need to do so slowly to avoid withdrawal symptoms. Reduce by 25 mg every couple of weeks.
I'm sorry to hear that nothing is helping to ease your RLS symptoms at the moment. I don't have any suggestions unfortunately. I think your message is important for us to hear...yes, today my 7.5mg methadone is working to cover my severe all night symptoms, with occassional breakthrough....but should it stop working and I needed to keep increasing the dose of opioids, then it would help me to know I'm not the only one in this situation. Thank you for sharing you problem. I do hope there will me a good solution. I'd like to know how you get on. All the best on this difficult journey.
I agree and I think you make an important point regarding sharing. We need to report what’s happening to us to help others make decisions and to build our understanding and range of solutions and advice . It’s not always easy to interpret what people are saying because they don’t always give full context and Sue and others do an amazing job of checking back through previous posts to understand the full picture and give relevant advice. However one thing is certain with RLS and that is that there is a lot of variability between people in terms of symptoms and what works for them, and combined with the fact that dopamine agonists can seriously and in some cases permanently damage dopamine systems, it’s not entirely surprising to me that there might be exceptions when even opioids do not work effectively.
I am on Gabapentin enacabril which is a salt specifically indicated for restless legs . I take it at 5pm or thereabouts It is long acting and has done a good job for me. I did not have success with the regular salt of gabapentin . But I really never tried it by itself for any length of time
I have to really watch trigger foods like chocolate and sweets unless I eat them earlier in the day. Also I do not eat late at night.
Also I bought a massage gun so if I’m rolling around in the middle of the night I get up and massage my legs and feet and that seems to help
I pray that these suggestions may help you and don’t give up hope. There will probably one day be a time when you are lying in the bed and not thinking of your legs and you can thank God because you have relief.
May the LORD who is able and who sees your pain be with you
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Gabapentin and Pregabalin
When to apply Neupro patch
I hope my regimen for RLS helps others
Is it withdrawal or augmentation or just ineffective?
