INSOMIO- AFTER STOP TAKING ROPINOLE

[help3]

stopped taking ropinole about 9 weeks ago. it took around 8 months to stop taking. i was taking 3-.5 ropinole at night. my legs still shake but tolerable. issue insomnia. i go to bed around 10.pm not able to sleep til around 4.30 am and alarm set for 6.15 am. i take warm baths at night and it goes completely away. after 30 minutes out of tub its back. i have had all my levels checked iron and ferritin and a diabetic check. all levels are normal range. does any one no what you can take for insomio when you have RLS

[SueJohnson]

I see from your past posts you took klonopin. That should have helped your insomnia. I also see you took gabapentin. Many people think gabapentin doesn't work because they don't take enough. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily."

[help3 in reply to SueJohnson]

klonipin not work for me. do not have insomnia if i take my ropinole. i stopped taking ropinole due to rls being so aggressive. no gabapentin not work. i will prefer to have my insomnia

[Joolsg]

Sounds like you actually still have severe RLS rather than insomnia. After Ropinirole, RLS rarely goes away completely.An iron infusion of Injectafer dramatically improves RLS in over 60% of cases so you could try that. It raises serum ferritin much more quickly than oral iron.

If that doesn't help, as previously advised you will need to ask for pregabalin or low dose opioids.

Dr. Buchfuhrer does mention that many people will not respond we to pregabalin or gabapentin after augmentation on Ropinirole so if they don't help consider low dose opioids.

[help3 in reply to Joolsg]

i tried to make myself believe that i did not have RLS, but yes i have RLS. seeing a pulmonary dr this Monday . hopefully i can get back on low dose ropinole with low dose opiod. this what i was taking over a year ago and it worked for me over 10 years. when i changed insurance they changed my prescriptions and i really tried to get off all meds. RLS really sucks

[Joolsg in reply to help3]

I would not go back on Ropinirole as you will just suffer augmentation again very quickly and it's no longer first line medication for RLS because so many people are suffering augmentation. Print off the Mayo algorithm and show to your doctor/neurologist.

[help3 in reply to Joolsg]

ok thanks info

[TheDoDahMan in reply to Joolsg]

Yes, I agree that a regimen of a low-dose opioid alone is better than also including a dopamine agonist. Methadone, which I am taking with excellent results, is often suggested as the best opioid for RLS because of its long-lasting coverage and resistance to tolerance, in other words, seldom a need to increase the dosage. Many RLS sufferers also sing the praises of buprenorphine.

[SueJohnson]

He said his ferritin was 176 in his post a month ago.

[help3 in reply to SueJohnson]

yes and i just had it checked again

[Joolsg in reply to SueJohnson]

They probably would not agree to an infusion then even though Dr. Earley has stated some people only respond when levels are above 350. Seems we all have different iron/ferritin levels and the substantia negra throws it back out of our brains.

[help3 in reply to Joolsg]

last check i was at 363 about to weeks ago

[BAK524 in reply to Joolsg]

is Dr. Early's statement published somewhere? I may want to reference that and mention it to my neurologist.

[Joolsg in reply to BAK524]

He mentions it in webinars. If you're a member of rls.org have a look at his previous webinars in the members' section.He does sometimes respond to emails so you could try that as well.

[SueJohnson]

I agree with Joolsg. Don't go back on ropinirole/ Instead opt for a low dose opioid.

[help3 in reply to SueJohnson]

thanks for info

[TheDoDahMan in reply to help3]

Yes, I agree that a regimen of a low-dose opioid alone is better than also including a dopamine agonist. Methadone, which I am taking with excellent results, is often suggested as the best opioid for RLS because of its long-lasting coverage and resistance to tolerance, (in other words, seldom a need to increase the dosage). Many RLS sufferers also sing the praises of buprenorphine. (This comment is a copy of my previous response to Joolsg on this page. Just want to make sure that 'help 3' sees it.)

[help3 in reply to TheDoDahMan]

got it. i will bring this up when i see my dr thanks for every one for all support and info

[SueJohnson]

Another possibility is dipyridamole. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole (a blood thinner) discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms.

[TheDoDahMan in reply to SueJohnson]

Wow, it sounds like dipyridamole is being described as a "silver bullet" for RLS symptoms. Why hasn't this made a bigger splash on these pages?

[Munroist in reply to TheDoDahMan]

It has been mentioned a few times, and there are a couple of members of this forum trying right now, I forget who unfortunately. You can probably find them by searching on dipyridamole. It is not tested for RLS however and is not without side-effects so early days at the moment. It also acts on adenosine which is responsible for making us sleep so given most of us struggle sleeping anyway, it feels a little risky trying it.

[Joolsg in reply to TheDoDahMan]

It doesn't work for everyone.I know a few who have persuaded their GPs to try it but it made no difference.

I suspect more trials with more people will be needed before we find out whether it helps the majority.

A bit like iron infusions. 60% have dramatic results, 20% moderate results and 20% zero effect.

[TeddiJ in reply to Joolsg]

Dr. B was not as excited about it as one would think! He will not prescribe it to me, specifically. Bummer.

[Joolsg in reply to TeddiJ]

I know a few who have tried it and it makes no difference. I suspect Dr. B will await detailed trials before prescribing dipyradimole.

[TeddiJ in reply to Joolsg]

Yes, so far he doesn't think it works well.

[TeddiJ in reply to TheDoDahMan]

DoDah-did you ask Dr. B about it? I did and he would not let me try it out. Even in combination with Horizant, which I thought would help my case.

[TheDoDahMan in reply to TeddiJ]

Hi, Teddi,

I haven't asked him. I'm doing so well with the methadone that I guess I'll wait for more research to be done on dipyridamole. So it appears that you've seen Dr. B in person? Cheers.

[TeddiJ in reply to TheDoDahMan]

Hi. Yes-I had an appt. in April.

[joepublic]

I had that for months during withdrawal - take Zopiclone for a while.

[Sillyvester19]

Hi I also suffer try drinking plenty of water and cut sugar out completely .

[help3]

I tried Gabapentin not work for me. Also just like Pregabalin wanting to eat at night hard to controlThanks for info

[Bganim1947]

I had similar issues with RLS until my pharmacist who understood my struggles with RLS suggested I ask my GP to prescribe a combo of Tramadol 100 mgs/3x a day and Lyrica 100 mgs/3x a day. It worked pretty quick— a few days to a week. That was 4 years ago, and it is still working!Talk with your doc about it. Sometimes I get a little breakout RLS mild in one leg or the other at night when I have been over working myself or upset about something. l I use a cream called Relaxing Legs by Magnalife. (I get it online) I put it liberally all over my troublesome leg — it dries in just a few minutes and it’s not greasy. That usually does it in just a few minutes, no more RLS sensations.