Severe restless legs

[Mazdasilver]

After quitting ariprizole I developed restless legs severe.No sleep at all.

[SueJohnson]

That happens in rare cases. Did you wean off very slowly. If not I suggest you go back on it and do so.

[Mazdasilver in reply to SueJohnson]

Yes I did

[SueJohnson]

Are you taking any medicine for your RLS?

[Mazdasilver in reply to SueJohnson]

Pramipexole

[Mazdasilver in reply to Mazdasilver]

My condition is getting worse

[SueJohnson in reply to Mazdasilver]

Why did you come off ariprizole?

[Mazdasilver in reply to SueJohnson]

Headaches , nightmares

[Mazdasilver in reply to Mazdasilver]

Iam better without it,

[SueJohnson in reply to Mazdasilver]

Sounds like you are augmenting. 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. This means you have to come off it. Luckily you are only taking .125. Ariprizole acts a little like a dopamine agonist. That's why when you came off it your RLS got worse.

This seems counterintuitive, but but I would cut your ,125 tablet in half and take it in addition to a .125 tablet. Hopefully that will allow for your symptoms to settle somewhat so that they are at least tolerable. Then get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US) and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks. 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. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.

Dopamine agonists like ropinirole and pramipexole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. (Pregabalin is more expensive than gabapentin in the US.) The beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off ropinirole (pramipexole) although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with 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. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."

Have you had your ferritin checked? If so what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. 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. 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. If you can't get an infusion, let us know and we can advise you further.

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...

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), 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 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.

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

[TheDoDahMan in reply to Mazdasilver]

Have you read up about pramipexole and augmentation?

[Mazdasilver in reply to TheDoDahMan]

Yes, but my restless legs is so severe , I never sleep,

[DicCarlson]

Well it's the Pramipexole - you are augmenting. The drug that was a savior is now the devil! You need a VERY RLS knowledgeable doctor to help you wean off the Prami. You could fill-in your profile more fully as to location and other drugs you may be on for additional help. There are plenty of posts re: augmentation and others on the Mayo Clinic algorithm...

mayoclinicproceedings.org/a...

[Mazdasilver in reply to DicCarlson]

One month , after quitting ariprizole, I stayed without med like pramipexole or others. I ended in emergency for no sleep.no choice just pramipexole 0.125 mg 2 hours before bedtime.

[tuckerdog109]

Prami seems to work fairly well for me. I take one mid afternoon and one around 8:30 in the evening. Still have rough flare ups one or two times a month. I don’t think anything out there works without issues.

[Aoibheann]

Mazdasilver, try Compression Socks during the day and remove at bedtime. They worked for me.

[Mazdasilver in reply to Aoibheann]

I tried , did not work.iam praying the new machine that came in mid. 2023 will work,

[mantel in reply to Mazdasilver]

Which machine do you mean?

[Mazdasilver in reply to mantel]

6 months ago, on you tube, a new method for restless leg syndrome.

[Aoibheann in reply to Mazdasilver]

Hopefully this machine does work for you. Do you know what it’s called and the price? 🙏 🙂

[Mazdasilver in reply to Aoibheann]

Is in you tube

[SueJohnson in reply to Mazdasilver]

If you are talking about the NTX100 ToMAc machine, it is very expensive $7,500 and very few insurances cover even part of it. And last I heard it was available only in California, Ohio and Massachusetts. Do you live in one of those states?

In any case you have a lot of things to try that are much much cheaper before you resort to that. A similar and much cheaper one is the therapulse.

[Medical61]

Have you tried Ropinirole?

[Mazdasilver in reply to Medical61]

Yes, works like pramipexole but causes augmentation too .