here’s what I use

[maribarosay]

Neupro patch 24 h 6mg, Tramadol 50 mg at night, Gabapentin 100 mg, Tylenol 500 mg, temazepam 30mg at bedtime, Iron 325 mg 3 x’s a week. Magnesium 500 mg at night.

Works pretty good though I’m augmenting.

I

[SueJohnson]

If you are augmenting then you need to come off the neupro.

You can do the reduction in one of 2 ways. Using a 1 mg Neupro patch cut it into sixths. The easiest way is to draw lines on it. This will equal the .25 mg reduction since 1 mg of Neupro = 1.5 mg ropinirole,. Or you can switch to ropinirole. Multiply the dose of Neupro you are taking by 1.5 to get the correct amount. Since you can get ropinirole in .25 tablets this is the easier way to reduce.

To come off ropinirole reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need to increase your tramadol 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.

Ropinirole and pramipexole 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.

The beginning dose is usually 300 mg gabapentin [If you are over 65 and susceptible to falls beginning dose is 100 mg ] Increase it to that 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. After you are off ropinirole for several weeks increase it by 100 mg 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.

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 ."

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...

I know you said in the past that you were taking iron and your iron was good but do you know your ferritin? Doctors will tell you your iron is fine but what is fine for others is not fine for those of us with RLS.

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, oestrogen (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, C, 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.

[Joolsg]

I would ask why you're on double the maximum dose of Rotigitone?Presumably you were on Ropinirole or Pramipexole before Rotigitone? And Presumably you started on a lower dose of Rotigitone and have increased?

Why are you on tramadol, gabapentin and tylenol?

If Rotigitone is working, you shouldn't need tramadol and gabapentin on top.

Do please listen to SueJohnson.

You are very likely to be augmenting and will need to get off Rotigitone.

Useful article attached.

sleepreviewmag.com/sleep-tr...

[ChrisColumbus in reply to Joolsg]

Great link - not seen that spelled out so well before!

[Joolsg in reply to ChrisColumbus]

I used to post it A LOT. Must remember to keep doing so.If only GPs would watch it!

[SueJohnson in reply to Joolsg]

My laugh for the day seeing the picture of lighting a fuse,

[Tildabri in reply to Joolsg]

Excellent article. I wish it could be pinned somewhere.

[Kaarina Administrator in reply to Tildabri]

This is now a Pinned Post.

[Merny5 in reply to Joolsg]

Great article!

[JenniferBut in reply to Joolsg]

This article is gold.I am so annoyed and disappointed with all the doctors and so called experts regarding RLS I have seen. Egos seem to get in the way of common sense.

Thank god I have sense enough to research things or id be on a ton more DA and in a potential world of pain down the track.

Why the heckers can't they understand iron is such a big thing for sufferers and to actually look at all times he other meds we are taking!

Thank goodness for you, sue and Chris here, honestly. You are all fantastic, can't thank you enough 🙏 ❤️

[Joolsg in reply to JenniferBut]

We had to learn the hard way. I've had such appalling treatment over the years from GPs and neurologists that I now research everything extensively. One GP, who told me to drink milk!!@@ for my severe RLS, actually had the cheek to say ' I hope you haven't been using Dr Google'. Erm, yes, actually, because you know nothing.

There are only 3 or 4 doctors and neurologists in the entire UK who know more than the basics. The rest are still dishing out DAs, refusing iron infusions and failing to warn patients about the very high rates of Impulse Control Disorder.

We have to educate them one doctor and one surgery at a time, if they're willing to listen and learn.

[art37]

I have started using cannabis oil twice daily plus sifrol, and magnesium , I find it helps and a tens machine