Restless Legs Syndrome (RLS) Discussion Board

I tried to find a starting post, but couldn't find one, so I guess I'll start one.

You would think that melatonin would help, right?

In theory, it sounds great. My experience though, is quite the opposite.
I've tried it many times. Boy, does it make my symptoms worse. Especially with periodic limb movements.
I can almost handle the rls in one leg or the other. It's strange. Sometimes it's one leg, sometimes it's the other leg. Very rarely is it with both legs at the same time. Of course, I've tried to turn over. Sometimes that helps.

I can say for sure, that taking melatonin makes it worse. Not only the rls in my leg, but when the periodic limb movements
kick in, I'm in serious trouble. Pacing around the house, hoping that I can get so tired, that I'll just pass out, and get some sleep.
I comes in my left arm, at the shoulder. I'm glad it doesn't happen during the day, when I'm around people.
How embarrassing that would be. It's like I'm getting shocks in my arm. It just flails around. I even try to put my body weight on my arm, as I'm trying to go to sleep.

What I'm saying, is that it never happens if I don't take the melatonin. I'm going to try valerian. The melatonin that I was using has that as an ingredient. I'll let you know how that works out.

I hope this can help someone, as this is a terrible thing to have, as we all know.
Hang in there.
God bless you all.

Others have tried it without help. Valerian hasn't been all that effective for some of us, either. (if you use the search function, top right, you will find older posts about both)

I cannot begin to guess how many of these I have tried. Basically, opioids and dopamine agonists are all that have helped with the PLMs or the RLS.

When my GP was trying to help me find sleep he wanted me to try the Melatonin as a course of 13 weeks. He said it was best for older people, I was in my early 60s at the time.
I found it of absolutely no benefit whatsoever but felt it necessary to complete the 13 weeks course in order to progress further with his blessing to try other medications.
No medication has ever helped my sleep. I've worked my way through all of the sleep meds, and now have been on amitriptyline for quite a while, again without any seeming benefit. I plan to wean off these.
GP has suggested Tai Chi.

Sleepless, there was an article in Nightwalkers about a year ago that discussed the use of Melatonin for RLS. The article came to the same conclusion that melatonin did not help and often is an RLS trigger.

My experience is sleep aids is similar to that of Polar Bear. I tried every prescription hypnotic (Ambien, Lunesta, etc. including some that were so expensive that my insurance refused to pay for them) and none worked. The only two things that help me with sleep are gabapentin and marijuana.

The only sleep medicine I have ever taken is melatonin, and it works well for me. But I just have RLS, not periodic leg movement. Perhaps that is the difference. And I don't take very much--anywhere from .5 to 3 mg. I take it with kratom at night.

I also just have RLS but unfortunately had no success with melatonin.

Melatonin and Valerian Root triggered my RLS something fierce.

Funny, my Doctor just told me yesterday, that she wanted me to try it. I don't think I will.

You could try a small dose first, such as 500 mcg. Then try 2 capsules, 3 and so on. Everyone is different, with 3 mg good for me and someone I know zonked out on that amount, with 500 mcg just right.

When managing it with RLS it can be a balancing act. With melatonin you may get better quality sleep, be that for the small amount you experience. The other part is that it may make your RLS worse and you get less sleep with quality being irrelevant.

I feel better in the morning taking ZMA, which is zinc, magnesium and B6. Check the ingredients as some ZMA is incomplete. These act together to slow down the breakdown of melatonin in your brain through the night. It definitely made a difference for me for sleep with no impact on RLS, but of course results will vary.

I take both slow release melatonin, which has B6, as well as ZMA. If my RLS is bad it can make it worse, or not impact it. If I’m only getting a block of 5 hours in a night, I want the sleep to be as good as possible.

You have lost the battle if you are scared to try anything because it may make your RLS worse, as it is only with exploring options that you will get better management; often with sleepless nights thinking ‘well that certainly didn’t work’.

WED/RLS worsens overnight as the natural level of melatonin in our bodies increases, and gets better as metatonin decreases. Some researchers have speculated that melatonin somehow triggers WED/RLS, but others suggest it is just a coincidence, or perhaps a common, undiscovered driver behind both melatonin rising and WED/RLS worsening.

In addition to the useful information provided by XenMan, I will add that if melatonin is to help sleep at all, it has to be taken at the right time, otherwise it might backfire. From https://www.verywellhealth.com/how-to-t ... in-3015192:

• If you have trouble falling asleep (especially if you want to stay asleep towards the morning), you should take it at night. It can be taken 30 minutes before bedtime. This is how most people use the medication.
• People who are night owls (with delayed sleep phase syndrome) may want to take melatonin several hours before the desired bedtime. If you naturally fall asleep at 2 a.m., but you desire to go to bed at 11 p.m., you may consider taking it at as early as 9 p.m.
• However, if you have symptoms of advanced sleep phase syndrome, in which there is a strong desire to fall asleep and wake up several hours too early, you should actually take it in the morning upon awakening. This condition is relatively rare (perhaps affecting less than 1 percent of people). If considering use in this way, consult with a sleep physician for guidance.
• You should also ensure that you have ample light exposure at the opposite time, morning or night, from when you take your melatonin. This is especially important for night owls.

@ Polar Bear: Tai Chi might improve your WED/RLS long term, which will eventually lead to better sleep. But don't expect quick results. Maybe it's time to face the augmentation.

badnights wrote:Maybe it's time to face the augmentation

Badnights - this is always in the back of my mind. Apart from being fearful of it, it seems impossible to find a time where my committments can be set to the side for a few weeks. Another aspect is how much support would be available from my GP. My tramadol was removed about 3 months ago,with my agreement, as it was not approved of being used with the codeine. As the Amitriptyline for sleep has been unsuccessful that also has been removed. Indeed I'm happy to see medications reduced/removed. Especially as I recently started using an inhaler and blood pressure medication.

Previously (a few years ago) GP was cooperative together with the little RLS book, it's a long time since we've had any RLS discussion and with his lack of RLS expertise I have sometimes telt that I was being given more credit than I deserved for knowing what I was doing/suggesting. Even though I knew more than him .... his words.
A newer GP at my medical practice was the one who recently suggested removing the tramadol, I suggested removing the amitriptyline. Happy to say that since removing the tramadol the short random tics of my shoulder/arm/leg have disappeared.

GP is my only RLS real life support. I absolutely would love to be off ropinerole, my dosage is way too high and has been for many years.

My dream is to have a month in isolation (or for time to stop for everyone else) where I can walk, jump, shout, cry, think of noone but myself, have no responsibilities and no demands on my support....
Think childcare, other family ill health, family crisis, aaggghhhh.....
Perhaps I am latching onto reasons to put off addressing augmentation, however there just never seems to be a right time.
Possibly, Rehab. Someone to take me under control - I say that tongue in cheek but with a serious aspect also.

Apologies for the long post, ...... back to Melatonin (which didn't work for me)....

Ah Betty, it will never be a good time to withdraw from life for a few weeks - but you know the scoop. The chances of your life being a billion times better on the other side are enormous. The chances of your life getting slowly worse and worse if you don't make the move are also enormous.

You may not have an opioid to carry you through, but that's been done before. Two-pronged attack: tell the newbie (or your old GP or everyone at the clinic) what you know about augmentation and the dangers of being on such a high dose. Get an updated ferritin number. Get an email from Dr B. Present it with his credentials (his 2012 paper mainly, also the book). Emphasize the paper. Tell them you're determined to get off that med because you're convinced it's been making you worse all this time, and what is their plan for supporting you thru this and can they please develop a Plan A and Plan B and Plan C for when you're thru the other side, because you will need something and it is fairly certain that going back on a DA is not a viable solution.

Then go off - wean if you want, I don't know about that part, you know the thinking that maybe weaning is necessary at higher doses - and when you're a wreck, unable to stand still let alone sit down, and haven't slept in 4 days, go see your doctor and let him/her see you like that, and say "what can you do to help relieve this suffering?"

If they recommend an AC, take it and go home and suffer for one more day. If they don't recommend an opioid after that, you might have to point them to Buchfuhrer's paper again. But you can also just live thru it, because it will end. Sleep will come in bits then in longer bits. I think tho, that once they see your suffering they will realize that this is no joke and will prescribe an opioid for temporary use.

Beth, thank you.
Yes, to wean or not to wean.... I think probably wean as I am on 4mg Ropinerole daily, even though this I feel, will stretch out the coming off period.

If they recommend an AC,

What is an AC ?

Prepare a plan of action with all relevant documentation and backup from Dr B. Proceed with determination and the conviction that to continue with Ropinerole is possibly harmful and 'I feel would be mismanagement of my treatment'........

I have copied your post onto a Word Document for reference - it is quite empowering.

Thank you

I hope it helps, Betty
AC was my shorthand for anti-convulsant - I just got lazy!

AC = anti convulsant