Relief.

[bcountryman]

Try a hot bath soak with epsom salts. Works for my son.

[ChrisColumbus]

Great. Yes magnesium helps some, including me, although it does nothing for others. And I had to take magnesium citrate orally: dermal application didn't help me. But others have reported that massaging with magnesium oil or soaking in Epsom salts/magnesium sulphate works for them.

[ChrisColumbus in reply to ChrisColumbus]

Some can't tolerate magnesium citrate because of laxative effects: magnesium (bis-) (di-) glycinate is then a go-to (and is worth trying instead of citrate anyway if readily available) as it is much less likely to give bowel issues and it also aids sleep.

[Elisse3 in reply to ChrisColumbus]

I tried the magnesium bisglycinate but still sent me to the loo. Maybe because of having IBS. ? So never got a chance to find out if it would help or not

[ChrisColumbus in reply to Elisse3]

That's a shame - but it really doesn't help everyone, particularly (I suspect) people who've got low iron, been on DAs, or suffer various triggers. Personally I'm also uncertain that rubbing in oil or putting salts in the bath helps many more than just having a massage or a hot soak without the magnesium. But that may just be my thick unresponsive skin talking!

[SueJohnson]

Welcome to the forum. You will find lots of help for your son, support and understanding here.

Since you haven't said anything about what you son is doing for his RLS other than taking the hot bath soak with epsom salts I will assume you and he know nothing and will give you advice accordingly.

First how old is your son? Or is he an adult?

Has he had his ferritin checked? If so what was it? If not this is the first thing that should be done for RLS. When he sees his doctor, he should ask for a full iron panel. He should 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. He should have his test in the morning before 9 am if possible. When he gets the results, he should ask for his ferritin and transferrin saturation (TSAT) numbers. He wants his 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 his transferrin saturation to be between 20 and 45. If his ferritin is less than 100 or his transferrin saturation is not between 20 and 45 post back here and we can give him some advice.

Above all he shouldn't let his doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation.

Instead he should ask him/her to prescribe gabapentin or pregabalin. (Pregabalin is more expensive than gabapentin in the US.) Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks to be fully effective. After that he should increase it by 100 mg (25 mg pregabalin) every couple of days until he finds the dose that works for him. He should take it 1 to 2 hours before bedtime. If he needs more than 600 mg, he should take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If he needs more than 1200 mg, he should take the extra 6 hours before bedtime. (He doesn't need to split the doses on 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 he takes magnesium he shouldn't take it within 3 hours of taking gabapentin (OK for pregabalin) as it will interfere with the absorption of gabapentin and he shouldn't take calcium within 2 hours for the same reason (not sure about pregabalin). Have him check out the Mayo Clinic Updated Algorithm on RLS which will tell him everything he wants to know including about its treatment and refer his 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...

Meanwhile 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, 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 as he has found, 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, listening to music, meditation and yoga.

He should keep a food diary to see if any food makes his RLS worse.

Many medicines and OTC supplements can make RLS worse. If he is 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 him a safe substitute.

By the way it would really help us to give you and he advice if you would indicate on your profile what country you live.

[bcountryman]

He takes Pramipexole…..says only thing that helps. Augmentation-yes. Anxiety, depression, OCD symptoms, sleepless nights.

[SueJohnson]

If he is suffering augmentation then he should come off it as it will only get worse and be even harder to come off it.

How much is he taking?

First off he should check if he is on the slow release pramipexole. The slow release ones usually have ER or XL after their name. If so post back here as the advice will be different.

To come off pramipexole he should reduce by half of a .088 [.125] tablet every 2 weeks or so. He will have increased symptoms. He may need to reduce more slowly or with a smaller amount or he may be able to reduce more quickly. He should wait until the increased symptoms from each reduction has settled before going to the next one. He will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as he nears the end. Some have used kratom or cannabis temporarily to help. But in the long run, he will be glad he came off it.

He should start gabapentin or pregabalin 3 weeks before he is off pramipexole although it won't be fully effective until he is off it for several weeks. After that he can start increasing it as I mentioned above.

[Joolsg]

I agree with SueJohnson. Your son will never be free of severe RLS until he gets off Pramipexole. He needs to listen to her advice and slowly reduce the Pramipexole.

[ChrisColumbus in reply to Joolsg]

Agreed - a hot soak (with or without Epsom salts) is just a temporary palliative if suffering augmentation on pramipexole.

And in my view magnesium - in any form - will only at best give partial relief if someone is suffering from low iron, triggering from other meds or diet, or has been on DAs for any length of time. In my opinion going on ANY meds for RLS should NEVER be the first line of treatment. Unfortunately of course far too many have, both in the past and still today, been medicated by doctors left uneducated and unsupported on the condition.

[bcountryman]

Can you recommend a doctor/hospital/treatment center near Chicago/Midwest?

[ChrisColumbus in reply to bcountryman]

The RLS Foundation recommends a number of RLS Quality Care Centers: my cousin in Wisconsin has been to the nearest to him - Mayo Clinic Center for Sleep Medicine, 200 First St. SW,Rochester, MN 55905

Phone: [phone].

rls.org/treatment/quality-c...

Still a long way from the windy city I know. If you search the Foundation website you'll also find recommendations from members, but they may recommend someone that they've been happy with but is not necessarily up-to-date with current best practice...

[Joolsg in reply to bcountryman]

relacshealth.com/

Dr Berkowski is one of the top RLS doctors in the world. He co-wrote the Mayo Clinic Algorithm for treatment of RLS and has just written the American Sleep Academy draft guidelines on RLS treatment.

If you can see him in person for a first appointment in Ohio, he can then continue treatment by tele medicine to Chicago.

He prescribes iron infusions and will help your son through withdrawal.

I won't lie, for the vast majority, withdrawal is hellish. But, once off Pramipexole, the RLS returns to what it was like before Pramipexole.

I can now sit through theatre performances, long flights, long car journeys.

[SueJohnson in reply to bcountryman]

Dr. Mari Viola-Saltzman - NorthShore University - Chicago, IL [phone] is one of the best doctors in the world.

[Simkin]

I agree with all the other comments about pramipexole. Also we need to know the age of your son before recommending strong tablets.

Is he in his teens or over 20.

I tried every type of magnesium spray/oil etc but none worked.

A strong dose of magnesium citrate gave me relief for 6 months.

Epsom salts did not help.

But you need to try all these things as we are all different.

Plus the majority on this site seem to be 70 plus but your son will no doubt be years younger so I would try all these vitamin type cures first to see if they help.

[Kejimkujik]

I am currently withdrawing from praipexole. Augmentation totally creeps up on you and it is through this site that I started really getting a handle on what I was facing. I can do walking meditations, a warm then cool foot soak which brings very temporary relief. I have made changes to my diet etc etc. Being on pramipexole for many years absolutely caused augmentation. My doctor refused to order an iron panel as he said my levels are normal. They are not normal for someone with RLS. I went through hell when my doctor had me come off pramipexole over a one week period, and then switch to of all things ropinirole….It was the worst week of my life and had me suicidal by the end of a week with out of control RLS and zero sleep or ability to rest as the RLS was sooo severe I could not stop having to move. I am now under a neurologist who respected my kniwledge and understanding of my condition and has given me prescriptions for the right drugs including buprenorphine, to administer pretty much as I need as I come off pramipexole. I am eternally grateful for this as it really literally is a life saver as is this site. Keep advocating for your son to get him off pramipexole. It may seem a hard road to face but the augmentation will not go a way it will just get worse and then there is the side effect of pramipexole of inhibiting impulse control….I suspect a bad combo with OCD. Good lick and wish you and your son well.