RLS and PLMS

[Johsschmidt]

I find that my RLS is constantly on the way, and I have to change medicine several times a year. it has become hard to cope. so much so that I can no longer be on the labor market, other than 10 hours a week. I am constantly tired and my sleepless nights affected my mood. at night I am particularly challenged. I have a skilled and understanding doctor who does what she can. I hope there will be a cure soon.

[SueJohnson]

Welcome to the forum. You will find lots of help, understanding and support here. But we need to know more so we can help you.

What medicines have you used for RLS and what has your experience been with them?

Have you had your ferritin checked?

What other medicines and OTC supplements are you using?

[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, eating late at night, 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, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices, using a standing desk, listening to music, meditation and yoga.

[Johsschmidt]

I have tried almost everything possible. Right now I get Oxycontin 2 times 5 mg, as well as 2 madophar depot, and 50 mg satralin. The best period I have had in 20 years was from February - September 2022, when I was on 4.5 mg of LDN (Natraxon) along with Madopar. But slowly the effect wore off. My plan is that from next week I want to get off Oxycontin and try LDN again. My biggest challenges are the nerve pain every 25 seconds at night which gives me a hopeless night's sleep. Yeah, I'm feeling pretty powerless about it right now. I am of normal weight and fortunately do not have difficulty getting in and out of, for example, Oxycontin.

I have tried Gabapentin, sifrol, mirzazapine, tradolan……

[SueJohnson in reply to Johsschmidt]

Do you have parkinson's? Madophar depot is used to treat Parkinson's, not RLS and contains levodopa which is a dopamine agonist which up to 70% of people on it will develop augmentation and it sounds like you have if the effect wore off. The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.

If for satralin you meant sertraline, that is a SSRI anti-depressant and is known to make RLS worse. A safe anti-depressant for RLS is trazodone which also treats anxiety and insomnia.

I'm glad you are not taking sifrol which is a dopamine agonist like levodopa.

How much gabapentin did you take? Many people don't take enough or take it in the wrong way and therefore don't find it helpful. Gabapentin is used for nerve pain as well as RLS.

Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If you haven't had it tested, when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, 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.

Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know about RLS 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 at Https://mayoclinicproceedings.org/a...

[Johsschmidt in reply to SueJohnson]

Thank you so much for writing it. I am so grateful for that❤️🙏. I have experienced before that I had to take a break with sifrol or Madophar. I don't have Parkinson's but the pain clinic I was referred to prescribed it for me. I also want to ask the doctor about sertraline. Thanks!

[SueJohnson in reply to Johsschmidt]

If you don't have Parkinson's you really shouldn't be taking Madophar. I don't know how many mg are in each tablet you are taking but I suspect it is too much. Unfortunately doctors who are familiar with Parkinson's do not know anything about RLS and think it should be treated the same way. However don't just suddenly stop it - it needs to be weaned off slowly.

10 mg of oxycontin is still less than the maximum for RLS which is 30 mg. And it says it lasts 12 hours but it doesn't so you get mini withdrawals as it runs out after 4 to 6 hours.

Do get your ferritin checked.

What about the gabapentin - you didn't answer that question.

[Johsschmidt in reply to SueJohnson]

❤️🙏

[Joolsg in reply to Johsschmidt]

SueJohnson has given you excellent advice.Your RLS will never improve until you're off all dopamine agonists like levodopa, sinemet, Ropinirole etc.

Follow the Mayo Clinic Algorithm.

Reducing the Madopar will be difficult, so do it slowly.

Once off madopar, you can ask your doctor to increase Oxycontin to 30mg a day, and that should then cover your RLS.

All anti depressants, except trazodone and Bupropion, worsen RLS so discuss a switch to a safe option.

Look at this article by a top expert, who explains why dopamine agonists are no longer first line treatment for RLS.

sleepreviewmag.com/sleep-di...

[Avocadopal]

Hi Sue, can you please tell me when is the best time of day to take magnesium tablets. I am currently taking Pregabalin x 3 50mg at 9 pm and one tramadol at 1pm. I hope to see a doctor about my ferritin levels but I'm sure all the junior doctors in my practice will not have a clue about RSL. Any advice please.

[SueJohnson in reply to Avocadopal]

Take magnesium at night.

[Shawnaldavis]

Read the blog night walkers, join the RLS foundation. Find a MD associated with it. You need a neurologist who is an expert in RLS. I was in the same boat as you. I live in California and the expert closest to me is Dr Mark Buchfuer, he saved my life.

[Sleeplesniights]

I found medication didn’t work for me so started taking cbd oil and things are an lot better at the moment

[drowsy]

I found out that my rls can be treated by eating high dopamine foods at night. Last night I ate eggs, banana, cranberries and an apple, and for the first time in 10 years, did not have to take any medications or supplements for rls. But if that doesn't work for you, try fennel (you can take 1/8 of a teaspoon of cooking fennel). It will work in 5 minutes. Also, stop the salt and sucrose completely, and lower saturated fat. Saturated fat and sugar interfere with the absorption of dopamine.

[givingITMybest in reply to drowsy]

I’m fascinated by this?! How much of these foods did you eat and how close to evening dud you eat? Is this then a regular regime for you?

[drowsy]

Probably a good idea to start out with a little bit, maybe 3 eggs. If not enough, then add a banana, etc. Look up "dopamine diet" I think part of what is happening is withdrawal symptoms from caffeine in the morning, just a theory. The other thing I read works is infrared red light therapy which you can get from a device from Amazon for $48 all the way up to $300. I just got one for $48, bit.ly/3E3Z7A9 , but haven't used it yet. another thing that is reported is music therapy. there is a u-tube video 160-hz music therapy for restless legs syndrome. youtube.com/watch?v=9pIdX3a...(Not working as expected?). But fennel works in 5 minutes.