RLS-STOPED TAKING MEDS

[help3]

i have stopped taking my rls meds. ropinirole for around 2 months. it took around 8 months to slowly get off ropinirole. my rls still shows up, but only when i lay down at night to go asleep.i toss and turn for about 4 to 5 hrs before rls stops. i average about 3 hrs of sleep. this still better than when i was taking ropinirole. i take warm baths evening to help symptoms.i have during last year tried every kind meds for rls and all i got was aggravation thought i was going to loose my mind . insomnia and anxiety i still have. think i need to take opioid to see if this will help at night. any suggestions would be appreciated

[Joolsg]

Depending on where you are, you may find your doctors reluctant to prescribe opioids.Read and print out the new Mayo algorithm and show to your doctors.

First line treatment is now pregabalin or gabapentin. If they don't work ( often the case after augmentation on Ropinirole) then opioids can be prescribed.

Methadone has very good results. Read and print off Dr. Winkelman's opioid study which shows low dose opioids are effective for severe RLS.

mayoclinicproceedings.org/a...

massgeneral.org/rls-registry

[help3 in reply to Joolsg]

thanks for info

[SueJohnson]

You say you have tried every kind of medicine for RLS in the last year. What have you tried, how much and when? Do you take any other medicines? Have you had your ferritin checked? It can take a long time for RLS to settle after coming off ropinirole, sometimes up to a year.

[help3 in reply to SueJohnson]

ropinirole- pre gablin-gabapintin-lyrica- plus several others i have been diagnosed since 2007. thyroid level-1.39 & ferritin 176. taking meds so long now i have insomnia and anxiety attacks . hot baths only works far about 30 minutes . about to schedule sleep study

[SueJohnson in reply to help3]

Your ferritin is fine, as I am sure you know. Tell me about your experience with gabapentin. When did you start taking it in relation to your stopping ropinirole? How long did you take it? How much did you take?

[Munroist]

If you haven’t already, make sure your iron is above 100 µg/L, you may need a blood test to establish where you are. Don’t listen to doctors who say that anything less than 100 is normal, it is for people without RLS but for people with RLS many see improvements when their ferritin is above 100.

You can raise ferritin levels with iron bisglycinate taken every other day as suggested many times here in this site.

[Cowbsky]

_ Hi,_ IMO looks a good decision stopping all those big shots;

_ just to share: my RLS (since 7, now 69) is well controlled since some 2 years ago with minor 0.4 mg of Clonazepam and Energy Medicine (in particular, Accunpunture without needles = EFT). Just in case, if you are willing to investigate science behind Energy Medicine (so many other names), this could be a good start up: chi.is/systems-mapping-reso...

all the best and good luck

[Cowbsky]

...and, of course, the Dawson Church's book: the Tapping Manual (Amazon);

[Runedrun26]

I’m taking 3mg of ropinerole how much should I start cutting down daily

[ProudGreatNana]

Hi, I haven't been on here in quite some time. Doesn't mean I didn't/don't need it. The slighest little change of medication, eating habits or routine can sometimes throw my RLS into a real turmoil. Several months ago, Sue J. suggested taking my vitamins, especially magnesium, at night time. As a child, we never took our vitamins at nite, since it gave "added energy" and caused us not to sleep well. I tried Sue's suggestion, it worked fantastic. Even though some evenings the legs start up, the magnesium, immediately at bed time, does the trick. Tried cutting back on the ropinirole. Every time I do, the rl get so bad. I feel as though I am in hell. Eventually I ended up getting sick from lack of sleep, then start all over. Developed rosecea last spring. Acne type on my face. Treated it myself not knowing what it was. Finally get in to dermatologist. After 6 mos. of numerous antibiotics, topical and oral, am finally on potent antibiotic 400 mg day for 10 days. Negative is, capsules are red. Have two different red food dyes in them. Am very allergic to red food dye. The restless legs are doing a marathon. They started up about 48 hrs. after first dose. A friend suggested taking tart cherry gummies. He takes them for joint pain from lymes disease. I tried them last nite. Took a couple hours before bed time. I slept well with no rls. Took two this am. and no restlessness. I don't know how long this will last but I hope at least until I am finished with the antibiotic. After the rosecea is cleared up and the weather is nicer that I can get out and walk, I may try cutting back again on the ropinirole. Of course, 1/4 of a pill at a time.