Therapulse

[LoisTonya]

I’ve just bought a Therapulse. It works when I have mild symptoms during the day but I’m still taking Pramipexole for night time and have bad side effects. Has anyone any experience of getting off Pramipexole completely with Therapulse?

[ChrisColumbus]

Glad that the Therapulse helps during the day, but looking back it seems as though you augmented on ropinirole and are probably augmenting on pramipexole. Dopamine agonists such as these and rotigotine are no longer first choice treatment for RLS amongst experts for this very reason.

rls-uk.org/augmentation-reb...

If this is the case you'll need to wean off the pramipexole very slowly: the therapulse may help a little through this process, but you may also need a low dose opioid. Current first line treatments gabapentin/pregabalin may or may not be the next step if you've augmented on two dopamine agonists: you may need a low dose opioid.

Look for Replies from e.g.  Joolsg /  SueJohnson on coming off pramipexole and on iron levels and other triggers for RLS

[LoisTonya in reply to ChrisColumbus]

Thankyou

[Joolsg]

I haven't heard of anyone using therapulse to get off dopamine agonists.Most people on here use a low dose opioid to settle withdrawal symptoms with each dose reduction.

I used a powerful massage gun to try to distract the awful sensations. I found hitting myself with a wooden stick to inflict pain was better.

It's scary to consider withdrawal, but it's the only way you'll get relief from the severe, intense RLS caused by Pramipexole.

See SueJohnson replies to posts about Pramipexole.

Reduce by half a 0.088 pill every 2 weeks.

See your GP to ask for pregabalin or gabapentin as replacement meds and start them about 4 weeks before the last dose of Pramipexole.

Take only at night as that's when RLS is worse ( it follows the dopamine cycle).

[SueJohnson]

To come off pramipexole, reduce by .088 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. Dopamine agonists like pramipexole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. The beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off 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. 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 of gabapentin or pregabalin 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 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) daily."

Have you had your ferritin checked? 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 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. 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]

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 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.