After coming off Sinement: Hi everybody... - Restless Legs Syn...

Restless Legs Syndrome

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After coming off Sinement

Ikeeptrying
Ikeeptrying

Hi everybody,

I have come off Sinement about a month ago. Through the years have gone through Mirapex and Requip as well. Currently not on any DAs. My question is after coming off a DA what then? How do you control the RLS? I'm currently on Lyrica and have had iron infusions. But the RLS still breaks through. Does anyone have a sure fire method to deal with this thing?

23 Replies

I think some people are lucky enough to have complete relief from RLS on Lyrica alone or Lyrica combined with a low dose opioid.

However, for a lot of us with severe RLS, even a combination of drugs cannot completely control it and we will get break throughs every night.

I’ve just accepted that I will get RLS at least 3 or 4 nights a week even though I’m on Pregabalin (Lyrica) and OxyContin. I follow a vegan diet now and that has helped- I was getting breakthrough RLS every single night before. The RLS feels milder as well.

You may have a better result if you add a low dose opioid.

Ikeeptrying
Ikeeptrying in reply to Joolsg

I hadn't thought of the low dose opioid though it's difficult to get a Rx for one here in the states. So sad. I also have MS and severe insomnia so the opioid would help that as well I'm guessing. I feel like I'm just a mess. Thank you for responding.

Madlegs1
Madlegs1 in reply to Ikeeptrying

Just because you may have finished the DAs, doesn't mean that you are finished with them! It can take quite a while to get to an even keep again, if ever.

However, if you have MS, then you would be entitled to look at CBD oil with low content THC. This ,seemingly ,is quite effective for rls, as well as ameliorating symptoms of MS.

If it's available in your state, or medical cannabis, this may be worth discussing with your Dr.

Low dose oxycontin is still the gold standard for rls, but government all round the world is running scared because some idiots misuse it.

All the very best.

Ikeeptrying
Ikeeptrying in reply to Madlegs1

I was afraid that I wasn't through with the DAs. Bad news. I do have a medical marijuana card and visited a shop today and got some CBD oil. Thank you for your response.

Lolly53
Lolly53 in reply to Joolsg

What you are saying is my experience as well. I have had to accept the fact that as of now there is nothing more to do. Am also on Lyrica and a low dose opioid. But I hold out hope that someday someone will find a surefire remedy. Thus my interest in this group. Blessings to you all.

Do you knoe about the scientific papet on the use of opipids for RLS? May be worth showing your doctor.

mayoclinicproceedings.org/a...

Ikeeptrying
Ikeeptrying in reply to LotteM

No, I'm not familiar with this paper. Will give it a read and show it to my neuro. Thanks!

I am interested to know what your current ferritin level is after the iron infusion. Have you had several blood rests since the infusion?

March 15 ferritin level was 53 ng/mL. June 21 it was 636 ng/mL. I know it sounds crazy but these are the numbers the lab gave me. I go back in 3 months for another ferritin level test. Have only had the one blood test since the infusion.

Went back and looked at the ferritin tests again. The most recent one was 6/25/18. It was 1050 ng/mL.

It is tricky to find the optimal treatment after a d/a but there is usually something that works most of the time. A combination of drugs at a low dose is usually better than a single drug (and this would be true if you eventually go back on a d/a also - best to only take a very low dose of d/a in combination with other drugs).

Unfortunately there is now some research that suggests that people who augmented on a d/a are less likely to find relief on an anti-convulsant such as lyrica (pregabalin) or gabapentin. You might need an additional drug such as an opioid. I find Kratom very helpful - it might be legal in your state.

Be aware that in rls sufferers there is a phenomenon of opioids inducing alertness at night so they might not be fantastic for insomnia. A good number of rls sufferers in the US use medical marijuana for their insomnia. It is successful for insomnia in rls sufferers so might be useful if you can access a program.

It is probably worth suffering from some break through symptoms as there is a school of thought that achieving 100% coverage will result more quickly in rls re-emerging. Good luck.

I wish marijuana were legal in my state but it is not. 😞.

Thank you so much for your very informative post. I tried some medical mj last night and it kept me awake. I'll have to keep experimenting I guess. What Kratom do you use? I tried some Red Bali that seemed to help if I don't take too much. As usual experimentation of different sorts seems to be the key.

Sad about the mmj. Do you know what strain you took? I think some forms (sativa strains) are supposed to be alerting but actually I have yet to try a strain that does not have me falling asleep within 40 minutes of ingesting it. I wish I could find one that was helpful for my rls as well as insomnia. Yes, unfortunately we have to be our own guinea pigs. I originally took red vein borneo kratom but any red strain seems to work reasonably well for me. A word of warning however, I found kratom kept me awake :( though not nearly so much as the oxycontin I was on previously.

I took an edible called Senei Chew, (medicated chocolate caramel) mostly CBD with 3% THC. Maybe the little bit of THC kept me up--idk. I envy you your ability to fall asleep so easily. I suffer every night.

Yes, I’m lucky that way. Insomnia is a curse.

I wonder if you tried a higher thc edible? I didn't find that cbd helped with sleeping at all. It is the high thc that does it for me.

Last night I tried the CBD oil by itself and it worked like a charm. Slept so well. Maybe that's the answer.

Leelee49
Leelee49 in reply to Ikeeptrying

Hi, I’ve tried cbd oil and capsules but they haven’t worked for me. Can you tell me which 1 you used, and where from please? Thankyou

Ikeeptrying
Ikeeptrying in reply to Leelee49

I used "Care by Design" CBD-Rich Sublingual Drops, 8:1 I bought it at a shop in Diamond Springs, Ca, but they're online at cbd.org. I can't remember the name of the shop but the same product is at cbd.org.

Leelee49
Leelee49 in reply to Ikeeptrying

Thankyou, I’m in the uk so will look for something similar.

I use the vapor pen with indica. Then I have another vapor pen with a formula called Deep Sleep. Herbals with mild thc. Really really helps for break thrus . I'm on .5 clonopin. But if I don't be careful and I eat too much sugar or carbs then nothing helps. Diet for me is a big factor.

there isn't a sure fire fix for RLS the only thing is to take painkillers O how I wish there was id be the first one.XXXXXXXXXXXXXX

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