I got myself off Mirapexin…nightmare but succeeded.
I was recommended Gabapentin but even 100mg absolutely killed my stomach ( I have reflux). Took 4 days of stomach tablets to recover. After a year and 2 months I still have Rls every night. Trying different strengths of codine tabs but also side effects. Any suggestions??
Welcome to the forum. You will find lots of help, support and understanding here.
Congratulations for getting off Mirapexin. I know that was hard.
Codeine is a weak opioid. I would recommend buprenorphine or methadone as they are long lasting. Most of the others last only 4 to 6 hours and need to be taken that often or you will have mini withdrawals. If you are prescribed one of the others be sure you are given enough to take them that often.
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(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.
Thank you so much for your help. I know my ferritin is 146. Drugs you mentioned would be extremely difficult to get here in Ireland. I had to explain to my doctor about augmentation, still prescribing mirapexin here as the first line.
I'm in Dublin and my GP is prescribing buprenorphine. I find it more effective than codeine. He also arranged for me to have an iron infusion although with your serum ferritin it might be hard to convince of the need. In my experience, medical professionals are somewhat more amenable when provided with references to peer reviewed studies or recommendations of professional organisations such as the American Association of Sleep Medicine.
I do not know anything about reflux. Is there any chance that pregabalin would be better tolerated than gabapentin? Otherwise your options for prescription meds are relatively limited. All of Sue Johnson's suggestions for non-prescription alternatives are seconded. I fall within the sub-group who find that a cup of coffee (decaffeinated works just as well) is helpful to deal with mild symptoms - I understand that it's to do with how it acts on the adenosine receptors.
Can you give us the name of your doctor so she can see him/her also I can add it to my names of doctors so if anyone else asks
Hi Sue,
I posted the above to show that GPs can prescribe buprenorphine in Ireland (unlike methadone). The situation with my GP is nuanced. He prescribes for me because we have known each other a long time (30+ years) and I have convinced him that I am well informed on the issue of RLS. He is in no way an expert on RLS (self confessed) and I am pretty sure that he has prescribed dopamine agonists in the past; he may well continue to do so in spite of what I have told him. I am also sure he would be unhappy to have his name publicly posted anywhere in connection with the prescription of opioids. I can pass on his name privately but he is not one I would necessarily recommend for RLS treatment. He is idiosyncratic and I'm not sure how he would treat another sufferer.
Yes if you could send a private message to me that would be great and I will make a note about what you said about him so if I do end up giving his name to anyone I will message them and also give this information.
Well done for getting off Mirapex. It's brutal.Are you taking PPI meds (omeprazole) for the gastric reflux? That can stop iron absorption and worsen RLS.It might be worth trying a really good probiotic, long term and prebiotics to try to heal your gut.
Symprove and VSL are the only probiotics recommended by ENT specialists. If you can heal your gastro problems, it may enable you to take different meds.
There are a few members on here from Ireland. Madlegs is prescribed Oxycodone, InvoluntaryDancer is prescribed Buprenorphine. It is possible to get these meds there, you just need to find a doctor willing to learn about the disease and the treatments.
Here is where it is so frustrating not to be able to look her up so she could send a message to find out who it is, AHHHRRRR!!!
Very true. Hopefully, HU will listen
They seem to have changed it already! I've just tried to search posts by a member who sent me a private message and I can't find them. So frustrating.
This is the response from HU. It doesn't work..I put member name in 'community header' and it says no posts relating to X. I've asked them to return it to how it was before.
In my correspondence with them they said they are not putting it on laptops "The current changes are part of a test on mobile devices, and the member search on laptops should still be available as usual. If you're experiencing issues with this on your laptop, please let me know so I can assist further." I told them mine doesn't show it a few minute ago.
If it ain't broke, don't fix it.......
Thanks again, I will definitely try the pre&probiotics to heal my stomach. It’s incredible that such a problematic condition is not sufficiently treated by so many doctors.
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 am 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.
Hiya - I have a hiatus hernia which causes severe reflux so take Omeprazole every day. Why don’t you ask your doc for this, then you could take Gabapentin again?
Unfortunately Omelrazole often makes RLS worse in common with other PPIs (proton pump inhibitors). I have seen Gaviscon recommended instead but you might have to search past posts to find the best variant.
Hi, I have terrible RLS too. My neurologist had tried me on several things, Including gabapentin and lyrica. Finally I found Ropinerol.... It's a game changer! I started at .5 MG For the past two years, Recently I had to go up to 1mg, But it works really well. I also take trazodone to help me sleep. Hope this helps!
Please read the myriad posts here on augmentation on ropinerol and pramipexole. This is not a recommended drug any more for RLS even if it works well for a while.
You could try to get some Tramadol, though it's an opiate with the potential for addiction. If taken 2 hours before bed it lasts me through the night and into the next day.
GPs tend to rely on advice from specialists eg neurologists.
It has been working for me these last 3+ weeks. Nothing else has helped.
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