Restless Legs Syndrome (RLS) Discussion Board

OMG you are preaching to the choir. I so love that MM is providing relief from epilepsy. I live for those kinds of discoveries. I mean I literally live for those things. According to my faith (I'm not religious though) we all come to earth for a purpose. My purpose is to applaud those discoveries. My husband's is to applaud a touchdown by the Bears. Speaking of epilepsy I essentally wet myself ( crude I know) when they found that a really high fat diet controls seizures in children as well. I consider all medicine sacred. That includes MM, morphine, DAs, peyote, LSD, ayahuasca. Well u get my point. I'm into it. All of it. From the molluscum my son gets from wrestling to ALS every successful treatment for every syndrome is a victory against the darkness

tried cbd 25 mg capsules from hemp last night... rls melted away immediately which i was getting sxs just as soon as I took my requipp at 7:30m.... i ended up taking 2 25mg cbd and slept 6 1/2 hrs woke up once... still have alot of fatigue due to gabapentin w/ds.... its been a month since ive been off gabapentin and still not right in the head. went from 2400mg down to nothing less than 2 months instructed by my x nuerologist.....anyway good sign for last night. I know it is only one night but I also didnt take loratab which is good too..I also reduced my requipp to .75mg. I'm also thinking that maybe every 3 months i have to change my regiment of natural and meds just because ive noticed that everything builds up tolerance/augmentation in most of the various posts ive read ... which i call fooling the brain. Until a Bill Gates kinda of doctor comes up with a cure, this is what im thinking I need to do life long... just my opinion... Thankyou guys for making me feel im not alone... Once the gabapentin is out of my head hopefully I can be on track to be number 1 sales guy again at my job and not put my family thru hell...lov all of you

Hey Figs

It was my understanding that colds can be caused by numerous different viruses - there is not just one "cold" virus. So - not quite the right analogy I think.

WED/RLS is known to be a complex disease and is thought by researchers to likely be caused by interactions among multiple genes and between genes and the enviromment. Loci on three different chromosomes are confirmed to be linked to RLS/WED (I might be out of date here, I think more have been discovered). Arguing against your assertion that WED/RLS is a single disease variant, I think, is the fact that some WED populations disaply linkage to one loci and absence of linkage to another - suggesting genetic heterogeneity in the disease.

Even without the genetic evidence, I wonder at your claim that the disease is (at the most basic level, I assume you mean) the same in everyone.The most obvious phenotype division to be made is painful vs. electrical. Another that has been made is primary vs secondary - think of all the secondary causes of WED, from pregnancy and kidney failure to Chrohn's and peripheral neuropathy (depending who you talk to). Some of these can be blamed on iron, but all? eg. hormones are suspected to be involved in WED in pregnancy. I think we'll be missing a large part of the story if we simply blame dopamine-iron dysfunction for all WED and leave it at that.

The dopamine-iron connection is not the only thing going on. The opioid connection was actually discovered earlier than the dopamine connection (by Ekbom, who also discovered the iron connection). Opioids relieve the symptoms better and more consistently than any other class of medication - what is going wrong in the body that this would be true? As I understand it, it can't be explained by anything we currently know about the dopamine system.

The glutamate connection is just beginning to be acknowledged. We are suspected of having excessive glutamate in parts of our brains, at least at certain times, which causes the unofficial symptom of hyper-alertness. This also is not related in any obvious way to dopamine or iron. There are studies that relate WED symptoms to low oxygen levels in the leg muscles (can't remember exactly - I think muscles), and numerous anecdotes about WED/RLS relief after varicose vein surgery, so possibly some connection with venous insufficiency. You get the point.

The jury is most decidedly still out on what causes RLS/WED, and what systems are dysfunctional, and some researchers would argue for multiple genotypes.

Beth, there are at least six genes that have been identified as increasing the risk of getting RLS. They are MEIS1, PTPRD, BTBD9, SKOR1, TOX3 and MAP2K.

I would expect that more will be found in the near future. From what I have picked up from my doctor, anyone who has primary RLS prior to about age 40 probably had a genetic linkage to the disease. Of course, in this case primary rules out RLS that is associated with other conditions such as pregnancy, kidney malfunction, MS, etc.

I’ve been planning to take some trips by air in the next few months, to other states, and realize I cannot take my mm with me. Recently, a poster on this topic mentioned that she used Mirapex when she traveled, then went back on mm when she returned home.

I decided to give it a try, even though I wasn’t going anywhere. So, on September 26, I stopped mm, and took one .125 tablet of Mirapex at 8:00 pm. I slept solidly through the night, and I continued taking 1 Mirapex for 6 more days without even a hint of a single symptom. On Oct. 3, I stopped, and went back to mm.

I’m happy to report that I did not experience any withdrawal symptoms at all. So that is a huge relief, and I now feel like I can go ahead and make reservations in the future without having the anxiety of worrying that symptoms will occur while I’m in the air, or that I won’t have any way to prevent symptoms while I’m in another state, or that I’ll have to go through withdrawal all over again when I return. I am way more relaxed now about traveling to states where mj is not available.

Several people had asked me related questions in private messages, so I hope this will answer those questions, with the understanding that rls can be different for each individual.

Great news natwest...Just got back from California. As most of you have mentioned probably not enough time to experiment. In fact my rls did get worse when i got home at 6am this morning. I still am taking .25 mirapex which has been helping the last week.My first night I had an edible which at the time had 25thc and i didnt know it... Real bad trip. My friend thought it was non mm candy... then the next several nights i tried vapor pen , tinctures, capsules and i did seem to sleep better.. ..I also saw this guy at the end of my trip. http://www.greenbridgemed.com Probably the most hopeful part of my trip... He actually pointed me in the right direction. I know it is trial and error but Im not giving up. Overall the trip was good. Was able to get a MM card np...San francisco was great also. Went to see an acupunturist too and that seemed to help also. He is a friend of a very close friend of mine and studied in China.. Anyway I can stay there for 1 month in jan 2016 at a condo to really give it a better try....

So crazyjoe, what did the guy at Greenbridge have to provide in the way of guidance? Was he steering you towards the CBD side, towards some sort of THC or a balance between the two?

And did you see any difference in the benefits of the tinctures, vap pen or capsules from your limited experiment?

And finally, I guess that means you will not be coming to Colorado in January?

Thanks for the update crazy joe. Glad you are back home. Obviously, trying so many different things in such a short time doesn't really give you much data on what will really work. Also, you'll need to be off of Mirapex to really know what works and what doesn't. But I'm happy you got a little time to experience some different forms of mm. Actually, quite a few. In between now and January you might try hemp based products, which as far as I know are legal in most states, as well as more acupuncture. There is a hemp-based version of Charlotte's Web, which was developed for treating seizures, so that might be a place to start. Acupuncture can do amazing things. I've tried it, with great success, in treating other things. But had never thought of trying it for rls. I would say if you find something that works, that's easily obtainable where you live, to stick with it for as long as it works.

I apologize for not posting regularly. A few months ago i found out my primary issue is Neuropathy, probably small fiber neuropathy (sensory) and my seconday is either RLS or Benign Fasciculations.

On the topic of daily use of mm, I was recently told by a PH.D in Neurology who does research for a prestigious teaching hospital that marijuana is the number one thing I need in my body for my Peripheral Neuropathy (for inflammation) I am NOT saying that inflammation causes RLS as I don't know of any correlation to Dopamine production, etc. However, a number of people in this forum have mentioned to me they suspected they also had some neuropathy going on in addition to RLS. I felt I had to share. (Take what you like and leave the rest:)

Thanks pinkynose, that is very interesting, and good to know. i appreciate you sharing this information. I'm going to plan to attend the webinar later this month and see what new research will reveal. Hopefully, it will answer some of these questions we all have. Good to hear from you again!

hey pinkynose... i was told that fascilations is due to being tired/lack of sleep

Hi Crazy Joe.
Fatigue especially muscle fatigue can be a cause of fasciculations (twitching) It's a Catch 22. Twitching keep us from sleeping and lack of sleep may cause twitching!

Fasciculations can also be a calcium and/or Magnesium deficiency or from a number of diseases.

Thanks NatWest. It's good to be back.

From what I've read, fasciculations can be caused by a bazillion things...or nothing. But, as with anything, people can literally post anything on the internet.

Here's a good post that explains them and a quote from the article, "Causes are also only loosely understood; there are certain behaviors that can trigger fasciculations, including too little sleep, too much exercise, a lack of magnesium, and the use of stimulants (especially caffeine), but no study has been able to concretely pin a cause on fasciculation. These presumed causes are correlations; adjusting your stress, magnesium, caffeine, sleep, and exercise level can help with fasciculations, but that's not evidence of causation."

http://www.popsci.com/science/article/2 ... -twitching

Thanks Ann for that great link!

Just checking in. Back in California...Been trying MM and Chinese herbs, acupuntures 2x week with .25 mirapex. Have been having 3 of 4 nights great sleep. Still getting some legs kicking late in the night but I take cbd capsule and it seems to abate.Trying to get stable then try wean off the mirapex.. The Mirapex by itself not working thru the night but 99% of the time did take away evening rls and better than requipp side effects...Very expensive acupunture, chinese herbs and MM... Maybe too much but I figure that monotherapy is not the way to go. Also want to throw this at the forum. I do have sleep apnea. It is controlled only by sleeping on my sides with apap machine. Once I go on my back ( which i have 4 discs in my neck compacted) I have all kinds of events even with the machine. Im trying to get Inspire product so that I can sleep more comfortably and with less events. Has anyone posted that if sleep apnea (since this is a comobidity disease) has gotten under control (i mean close to zero events a night) that there rls has gotten better or is non existent. Just asking.