I've had RLS for decades & currently take Horizant, methadone, and a small amount of Mirapex (I ran into trouble when I tried to drop the Mirapex completely so my specialist suggested leaving a small amount in for now). To help further lower my med doses, or to help with handling flareups without increasing doses, I am also looking into non-drug methods. TENS works (so far) for small flareups; and now I also want to to try the Therapulse.
I have bought a Therapulse to try out. But what I find intimidating are the instructions (via the "data sheet" available via the maker's web site) to slowly scale up using the device over a full week. They say that for "Days 1 and 2" you should use mode 1 (low frequency) three times a day (!); then for "Days 3 - 5" to continue this pattern, while moving up to modes 2 or 3; and finally on Day 7, you can "reduce usage frequency to twice a day" (??) while using whichever mode seems to work best for you.
Is it really necessary to use it 2x or 3x a day?! What about using it when you feel the RLS come on, or perhaps shortly before? The instructions don't make a lot of sense to me. It's not the way you would use TENS, for example. And they don't say anything at all about actually using it when you feel RLS. I really don't get the rationale and they don't explain it.
So my question is - for those folks who have found the Therapulse helpful, how do you actually use it? Did you follow the instructions as described above, or did you go right to using it on actual RLS? Do you use it two or three times a day, or only at night or only when you feel RLS? And did you in fact find that particular vibration modes work best for you - and if so, which ones?
Thanks!
Randy
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Hi i used the first setting to start off then found the other settings didnt help so after going through them all i have settled on no 8. as working for me i didnt follow the other instructions as the build up each day whether that was important or not i have no idea. I use it day or night if i feel the RLS start with these first twinges i still take my meds as my tolerance to all meds is low i use the therapulse as and when i get breakthrough in the night or meds have worn off in the day. If you are augmenting on the mirapex and reducing your dose i am thinking you will be experiencing withdrawals if so not sure if the therapulse will help. Sue , Jools , Lotte any idea. ?
Elise, thanks for the info. Actually right now TENS deals nicely with whatever is going on with the small flare-ups - probably the Mirapex despite it being a small amount already. I like the idea of Therapulse as simpler to wear and use than TENS but we’ll see.
You say you had trouble coming off mirapex. You can get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 ) and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks. Horizant is probably not going to help completely until you are off mirapex for a few weeks.
Horizant is expensive. Horizant has a prescription savings card where you pay as little as $55 a month for 30 tablets. Https://horizant.com/savings, You can also get it from Truax Pharmacy (tps-rx.com/) for a similar price.
Since you are interested in non drug methods:
1) 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 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.
2) 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, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, 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, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
Sue - thanks for replying; over the years I’ve explored virtually all the avenues you mention, eg diet, exercise, supplements, checking ferritin level, etc. I’m really just asking about the Therapulse here since that is one of the few things new to me.
Hi I didn't do the slow build up part I just waited for the first sgn of RLS and put it on think it's number 4 I use and leave it on until I go to sleep or the battery runs out !
This is what I've been doing aswell as using it per instructions didn't work, I think its number 3 I settled on and I keep it on until I fall asleep and the battery dies. It doesn't always help but for flare ups during the night it's good
I followed manufacturer instructions (give them the benefit of any doubt, they've done all the work in bringing this to market and know more than we know ... unless it's a bit of kidology) and then just use as and when RLS fires up, on setting 1 or 2, 5 minutes per leg. Works for me, as recently as last night. Also use it on tight glutes that sometimes wake me up... brilliant.
I use it most nights at the moment as having break through RSL still and it seems to work as I fall back asleep with it on I don't like to be without it now. I didn't build up and use on the first setting which is continuous rather than intermittent.
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