wrestless legs syndrome help!!!

[233abcdfg]

so my dad has had wrestless legs syndrome for as long as I can remember. Life has gotten really really bad. He’s been addicted to vyvanse for awhile now and those are the only things that help him sleep he says but that hasn’t been helping lately and I honestly don’t believe it ever actually was. Who knows… anyways he’s also been taking Levadopa 25mg for wrestless legs aswell. Those things are poison he’s been very angry and depressed and hasn’t been himself for very long time. I can’t bear to see him suffer anymore as it’s causing me a great great deal of suffering. He’s tried an abundance of treatments but nothing ever lasts. Our family doctor is a complete moron handing out pills like candy. Does anyone know any doctors that specialize specifically in wrestless legs syndrome as what he’s doing now is slowly killing him. Any help would be tremendously appreciated. Thanks

[Amrob]

Does your dad also have ADHD, hence the Vyanse?

There's an establish correlation between ADHD and restless legs syndrome (RLS) so it may be the case that treating one helps the other but that's not definitive.

Does he have any other medical conditions?

If you're prepared to nominate his country of residence, it can help tailor responses more specific to your dad.

[ChrisColumbus]

Lisdexamfetamine (Vyvanse) - which is generally used to treat ADHD or eating disorders - can make RLS worse for some, and levodopa is no longer prescribed for RLS in most places because while it helps in the beginning it tends to make things worse in the long run (a process called augmentation).

Which country/area is your father in? There are very few RLS expert doctors in some places, and you may get better advice here more quickly.

[SueJohnson]

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

First off he should take the Vyvanse early in the morning as it lasts around 14 hours and he doesn't want the stimulant effect at night when he is trying to sleep.

As Chris mentions levodopa is no longer used for RLS. Unfortunately pramipexole or ropinirole are also often prescribed but they are no longer the first line treatment for RLS (Restless legs not wrestless).

To come off levodopa, he should reduce by 10-100 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.

Ropinirole, pramipexole and levodopa are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations. (Pregabalin is more expensive than gabapentin in the US.)

He should ask his doctor to prescribe gabapentin or pregabalin. (Pregabalin is more expensive than gabapentin in the US.) Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). [If he is over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin).] It will take 3 weeks to be fully effective and he should start it 3 weeks before he is off levodopa although it won't be fully effective until he is off levodopa for several weeks.

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...

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.

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, 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 you a safe substitute.

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

[233abcdfg]

thank you all so much very greatful!we are located in Canada. So he does have adhd for sure, but for a couple years he wasn’t taking it properly and was abusing the medication. The Levadopa was impulsively discarded as he was unaware of the withdrawl effects. So it’s gonna get worse before it gets better. I’m going to let him know to get a prescription for the low dose opioids and hopefully that helps. Temporarily. I was reading about the treatment with stellate ganglion block for rls, I’m curious if that will help in any way. There’s a great deal of information here and I don’t the time at the moment to respond to all of it. I’m going to show him this and get back asap

[SueJohnson in reply to 233abcdfg]

Can he go back on levodopa and let his symptoms settle and then come off slowly as stopping cold turkey can be brutal.

For an 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 he will have mini withdrawals. It can be hard to get opioids as many doctors won't prescribe them which is why when he sees his doctor he should print out the section on the Mayo Clinic Updated algorithm on opioids to take with him.

My advice is to go with the accepted treatment which I mentioned above. If he had run out of options which he hasn't, then he could try the stellate ganglion block but there are even more options before I would go with that.