Hey guy were on the verge of very exciting times, however for now you may like to ask your Gp for Circadin 2mg or the equivilant in your country this is medical grade Melatonin and easy to get. There are plenty of harsh sleepers, I have personally tried it, works in with our own melatonin.
I am working with 2 companies right now some will be available internationaly of the very highest grade Hemp /with MTC and Melatonin.
It has just hit Australian shores yesterday they are sending me samples to try before it goes live on website.
Also I am working with a second generation healer I stumbled on in Hawaii and I have been trailing her products for pain , muscle smoothing with and without CBD/Hemp for 12 months over absolutley amazing she is also working on something that may help mild RLS all her products have ZERO filler or water or alcohol added. Totally natural.
As these companies both in Australia and and go live I will let you know and give you the back drop story.Hemp is legal in most countries as long as companies. They are not allowed to use the word cbd that is rapidly changing
The laws are changing very quickly around CBD and Hemp Cannabis ,in europe and Australia.
For now Melatonin is a nice option.
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Shumbah
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For the vast majority of RLS sufferers the Melatonin will send their RLS through the roof. I took it 15 years ago not knowing and not making the connection. I had RLS not only in my legs, but in my arms and chest. When I stopped the melatonin my RLS went completely quiet. It had always been mild but it virtually disappeared for many years. Melatonin, which is a dopamine antagonist, may (and this is just a guess), up-regulate our genetically pathetic and few dopamine receptors. The opposite of what dopamine agonists do, which is down-regulate our receptors. But it's a living hell while you're taking it. And like I said, it's just a guess that in the LONG run it MAY up-regulate our pathetic receptors.
There you go, I have only ever taken melatonin it a couple of times max 4 nights in a row. And never when I have an early start as I really over sleep.
I tried it Melatonin pre buprenorphine Absolute ZERO chance it would or did work before the Buprenorphine.
Since I started Buprenorphine I sleep like a dead body and wake up in the same position.
However when I am working hard on my projects if my head spins with information
Melatonin’s defiantly stops my head from spinning on those night I also use insight timer and I go to the story tale section and listen to a tale to turn my brain off.
So mine is for a totally different reason now Iam under control.
Something interesting to me is I suffer from other conditions and pre Buprenorphine VALIUM did absolutely nothing it was given for shoulder however I was prescribed some Valium recently wow my body seems to like it with the buprenorphine and really knocks my busy mind and helps my shoulder again never when I have an early start.
Mind you I rarely get to bed before midnight as I am always helping people of different time zones.
So I take my drugs at 11 or midnight regularly so that would make a different to others people on buprenorphine taking all there meds earlier.
Some days I work 20 hours and only get 4 hours and have an early night like I will tonight as my eyes are on fire and I will take less buprenorphine due to the long half life I will not require as much.
This dam disease is so complicated and different for everyone.
What medications make a massive difference to, and if you are in augmentation.
Some people suffer from insomnia as a seperate condition.
I am seeing Terrific results with people who persevere with Buprenorphine and get through the horrid augmentation.
I have a gentleman I have been working closely with who is weaning off sifrol and something else and is now on 15 mg Norspan and was not quite there nearly enough
Doctor added 7.5 Targin add he is sleeping nice and still.
As the augmentation reduces as will the Targin and Buprenorphine will likely be less.
Temazepam and Stillnox and much stronger meds are available which is still better than not sleeping.
This is a voodoo, hoodoo article, however, it is noteworthy that melatonin did NOT make their top 10 list of ways to repair dopamine receptors. So I'm likely wrong in my thought process that in the long run melatonin supplements may up-regulate our receptors. I don't know that any of these would work for us since our receptors are genetically bad. It's more for addicts who have down-regulated their receptors and want to get them back to normal. Our normal stinks. However, for any brave souls out there, with some extra time and money on their hands, and in discussion with their MD...theoptimizingblog.com/repai...
Shumbah you remind me of this quote: "Nothing in life is more liberating than to fight for a cause larger than yourself, something that encompasses you but is not defined by your existence alone." Quoting John McCain, war hero, U.S. Senator. About 15 years ago someone like yourself recommended to people on an RLS blog "just take some iron at night, there's something about that free-floating iron that helps." I never looked back and it has never failed me except when I ran out of ferrous bis-glycinate and took some ferrous sulfate instead. So people like you are lifesavers. I know little to nothing about other RLS treatments as you do and actually know very little about the correct level of iron stores for a person with RLS or iron infusions. I truly believe that if we can pinpoint, determinatively, what causes the diurnal nature of RLS and other phenomena such as relief upon standing, that it will take us far in terms of treatment. Maybe? Anyways, I think that looking upon RLS as being different for everyone is too lessen it as a disease that has a pretty definitive pathology. At this point, I do not look at RLS as being any different than say Type I diabetes in terms of knowing the general parameters. How terrible would it be for someone with diabetes to not understand how the malfunction of the pancreas is responsible and the resulting lack of insulin which must be replaced via shots. Accordingly, I think it's important for everyone with RLS to understand this article and thus understand their RLS and springboard from there. hopkinsmedicine.org/neurolo...
• in reply to
For clarification.
One explanation for restless legs is a lack of dopamine receptors in specific areas of the brain i.e. not part of the "reward system". If in addition to lack of receptors, if dopamine levels fall, then RLS will be worse.
This explains why RLS is worse at night when dopamine levels naturally fall.
Dopamine agonists work by stimulating receptor sites, which has a similar effect to raising dopamine levels.
Melatonin on the other hand inhibits the release of dopamine and this is why dopamine levels fall at night. This is a natural circadian rhythm.
It's also why melatonin can make RLS worse.
I also believe that melatonin is NOT a dopamine antagonist, because that would mean it would block dopamine receptor sites. It doesn't appear to do that, it acts pre-synaptically.
However if it were an antogonist that would also explain why it would make RLS worse. If it did up-regulate dopamine receptors on the other hand, that would improve RLS.
As well as stimulating dopamine receptor sites, agonists can lead to higher levels of dopamine. It has been found that persistently high levels of dopamine or long term use of agonists, does lead to down-regulation of receptor sites. Hence this causes loss of efficacy and eventually, if enough receptor sites are "lost" this process leads to augmentation.
This same process also explains why levodopa which works by raising dopamine levels causes augmentation even more quickly.
For me, and me only. I took melatonin for years thinking it would help me sleep. While initially it worked, over the years I am sure it was more habit than effective. It helped me fall asleep, but never stay asleep. Two hours latter I was up.
I abruptly stopped taking about 2 years ago. I won’t even consider melatonin now.
Thanks for explaining the mechanisms behind RLS, every little bit helps.
Just a warning about melatonin dosage. The FDA allowed the dose of 2mg because that was the dose that was researched originally. Therefore Drs can only prescribe that amount. This dose- between 2 and 5 mg- has caused a lot of bad side effects ,and is why Mel is only on prescription.
Recent research has shown that much smaller doses are more effective. Melatonin is one med where " less is more". They found that the most effective range for insomnia treatment is 2 to 5 micrograms.
This avoids most of the bad side effects.
How can we get such a small dose?
I buy the 2.5 mg liquid Mel from Vitasunn over the internet. The full dropper in the bottle has 2.5 mg - so it's not too difficult to judge 1/10th of the full dropper.
I find that helps get me to sleep within about 20 minutes.
WARNING--- Melatonin is , ironically, a trigger for RLS for many people. I can only use it for about 3 nights running-- or else it's me that is running!😰
But it really helps when I'm getting overwhelmed with insomniac effects.
How to take it?
I fill the dropper with what I judge to be 1/10 th and put it on my tongue and swirl it around my gums to buccal it. ( Yeah, I know, it's a new word to me too.)
Shumbah-- thanks for doing so much for RLS worldwide. I'm working on the Sanctity nomination papers as I write!😝
For me also less was better when it came to Panadiene extra 15 mg
Then was banned from over the counter and not available for another 7 months in Australia
I had to be prescribed Panadiene Forte 30 mg for 7 months due to that situation I am sure I augmented on that and the oxycodone of course not everyone will have that issue.
When I was really sick
I was given Ketamine to try yes illegal it was like a scene out of a Vegas movie 🎥 in my house that night
I was absolutely terrified.
omg night one I felt zero side effects upon using it.i had to use 4 small lines slept like a baby felt like I had one the lotto next morning.
We thought how good is this, day 5,6 and 7 where horrid and I took no more. Now I am
Not on other drugs who knows except Dr Brooks who I met after that and did not think to tell him as he told me he did not think it would work.
It is really hard when you are on other medications to know what Reacts favourable or unfavourable. Things I could not take I can now take with better results.
That is why this forum is the best in the world.
Everybody is trying everything and sadly it is not one size fits all and also sadly some give up in the first 24 hours or day 3 which I nearly did on the buprenorphine day 4 I had no fuzzy ness on unusually daytime feelings that I did suffer for 3 days nights where spot on from day one.
When I started the buprenorphine I had no nausea back in Australia they would only prescribe Temgesic which is a minuscule dose compared to my previous dose and yet I suffered nausea.
It makes no medical sense I have checked the fillers are not sinister.
And I know others who have also had nausea on Temgesic.
I went straight back onto buprenorphine much higher dose and bingo perfection.
No Rhyme or reason.
I am
Seeing some
Amazing things keeping notes on everyone on Bup in its many forms working with doctors to get access and also trying to get a n Australian Dr I am also Working along side a very high profile Dr in Australia to set up a retreat for RLS suffers with a pharmacy attached to compound Buprenorphine sublingual wafers also CBD THC and some other natural Products I am
Working on for mild cases on no medication.
I am hoping for An international portal for patients so he can send information to doctors in other countries with what he is prescribing and the outcomes. He has certain things patients will have to do before they can trial Subutex not Das.
He knew nothing about this condition until he met me and we have been working to make a pathway for Australians to access better treatments with compassion.
However I am trying to push him that bit further as a letter from
A doctor to another Doctor across the globe may make a massive difference.
This is one of many many things I am doing behind the scenes.
My fury will not stop until our people are treated with much more care compassion and get relief with less suffering.
You are so right that there is such a lot of great information on here, but I get lost in it at times, trying to keep notes and work out what worked and why.
I wish there was some way to pool all of our experiences in a way that helped us easily view the big headlines, and then delve into the smaller ones, because as we know, we are all different. And to be able to show this to our doctors.
Not sure if this is related to what you are working on, but I find many times when I try to do a search for a particular word or topic and I filter my results so that I will only get results in the restless legs syndrome group that that category somehow just disappears! It is extremely frustrating because I don't want to get results from another group in here that is totally unrelated to my/our situation.
Sadly, Melatonin makes me very jittery. I must have some wires crossed, as caffeine does not make me more alert.
I have taken melatonin for years - but not recently. I was using a 1mg sublingual tablet - cut into 4 - so it was a 0.25mg to initiate sleep - then again if I woke up. Many melatonin teas contain just 0.5mg. These almost micro doses are usually enough to initiate falling asleep. I have also used a product by Natrol - time release 3mg and it seemed to work fine. Again all this is for Insomnia not RLS.
I avoid melatonin like the plague. It was one of the first otc things I tried when my rls progressed to giving me insomnia. After taking the recomended dosage I my rls became many times worse than it have ever been moving from my legs only to my legs, back, shoulders, and arms. It left me wiggling my whole body for many hours instill it finnaly wore off.
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