Severe RLS for 40 years

[Happygrandmother]

I am a 75 year old woman who has experienced RLS since the late 1970's. I have been prescribed Requip until it didnt work, Pramipexole (Mirapex) up to 4 mg daily and worked great until augmentation. Since then I have been on Klonopin, Pregablin (Lyrica) Carbidopa/Levidopa, medicinal Marijuana vape pen, to either slight or no relief. I now take .5 mg Mirapex, 1200 mg Gabapenten, 1 mg Roxycodone and 2 OTC Seratame caps nightly. I told my neurologist I didn't like taking Roxycodone she said I could take Methadone instead I don't like the sound of that either. Some nights I can go to bed and sleep ok, other nights I am in complete misery. I don't know what else to try or where to turn for help. Any suggestions are greatly appreciated.

[SueJohnson]

Why are you back on Mirapex when you suffered augmentation before? You will soon suffer it again. And gabapentin won't work well until you are off mirapex and your symptoms have settled. . My advice would be to get off the mirapex and give gabapentin a chanced to work. My guess is you are probably taking all at one time, which is the wrong way to take it. Is that the case?

To come off pramipexole, reduce by .125 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. But in the long run, you will be glad you came off it. Don't be afraid of methodone. It will work better than Roxycodone which is short acting.

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 obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

[SueJohnson]

Also have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal.

[SueJohnson]

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, 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, 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, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any other than the ones you mentioned 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.

[TheDoDahMan]

I was only sleeping 2-4 hours a night. I had been prescribed every medicine the doctors would allow. I spent hundreds of dollars on OTC, devices, ointments, what-have-you. I heard about low-dose methadone therepy and traveled 500 miles to find a doctor with the courage and knowledge to prescribe it for refractory RLS. I took a 10 mg tablet and slept 8 hours of deep refreshing sleep. I am 4 years into this therapy and feel it has saved my life.

Just sayin'.

[wairoa36]

I am nearly 87 and have had severe RLS for at least 40 years. I was doing well on Mirapex for many years till I wasn’t! I got myself off it with help from these wonderful people here . After trying every drug known to man , sleeping not at all, being suicidal , I got an urgent appointment with a sleep specialist. He tried all the same drugs with no luck. I asked to try Methadone. I had done my research and it seemed to work. He said you can try it but you must have very severe pain! I said I do!

First 5 mg — no luck . Then 10 mg . No luck . He said well that’s no good. I said can we go up one more? 15 mg once daily at 530 pm and o slept 5 hours! Heaven! I can live with that. It’s now about 2 and a half years , I live in Australia. I eat small meals, wholesome foods, non processed. No alcohol. One coffee early am no more unless I have a bad dose of RLS when I will have another coffee. It does the trick

If I go overseas by plane , or road trip or dentist . I take a a mirapex. Next week I’m going to Vietnam and I will take a Mirapex when I board. That will be enough.

Good luck. Get off all that rubbish you’re taking. How do you know what works? Get a new Doctor. And do whatever those gurus on this site tell you to— they know best what to do.

Also get your blood tested for iron. I have Hematomachosis . Nobody worries about it so I don’t either.

Those angels there are the very best. They sure helped me I am so grateful to them . Best wishes and love

[Pizza_mom]

Hi! I’m 77 and have been plagued by RLS since my 30s. Requip worked great until augmentation. Since I had to quit that, I’ve relied on magnesium and iron supplements. It helped but didn’t take it away. 2 years ago a sleep specialist put me on 300 mg if gabapentin. I was a little groggy in the morning so cut back to 200mg after supper. I’m almost afraid of saying this for fear I’ll draw attention to it from the RLS gods, but it has worked wonderfully. About once a month, I might get the RLS urge but I walk it off and go back to bed.

[SueJohnson in reply to Pizza_mom]

I think that is great !

[ratfancy]

Methadone has been a gift to me. It's like I never had this disease. And I tried everything before. I say go ahead if you have a reliable doctor who will continue to prescribe it for you.

I have no side effects.

[Nightwalker999]

Hi there, I was suicidal and referred to a sleep consultant fast. She was a godsend to me, she understood absolutely and Px Methadone at first 2.5mg didn’t help but assured me I could go up if necessary. I’m on 5mg every 12hrs now and need a little adjust but I’m able to manage the everyday life with the ants reduced. In Wales it’s not easy to get unless you’re an addict but my daughter found one chemist willing to Px for me.

I’m not sleeping very well yet but can function without walking or jugging non stop. My life seems to be getting worth living after so long wanting to check out.

My thoughts and love sent to you all in the same boat.