Restless Legs Syndrome (RLS) Discussion Board

Anyone have any ideas of a drug I can take irregularly to deal with my RLS? Quick recap of my RLS story...Sinemet CR, then Mirapex for about 15 years or so (fairly low dose...1st .25 mg, then increased to .375 mg), nightmarish withdrawal after augmentation set in, then Lyrica for about a year, now drug-free for the past 3 years and just dealing with it. I would however appreciate some help "dealing with it" when I'm away from home, which is 15 or so nights/year. When I'm at home, I have enough tools at my disposal to get through the night, but hotels can be tricky. The feeling of confinement tends to make the RLS worse. I was thinking of going back to either Sinemet CR or even a low dose of Mirapex for the nights away from home, but I'm frightened by the thought of augmenting again. I don't think I would augment again that quickly (typically I would only take 2-3 nights in a row), but who knows? Anyone have experience going back to a DA after augmenting?

I went back on a DA after augmenting. And, until I had iron infusions, I never stayed on them long, but did for up to 3 days (I originally augmented in around a week). It always worked for me. Now that I have had infusions, I can stay on it for months, but still take breaks every so often.

Thanks, Ann. I worry about doing even more damage to my dopamine receptors, but at some point the potential relief may outweigh that concern. Since a trip to CO a few months ago, I've been taking Marijuana gummies when away from home, and that has helped somewhat, but MJ is not legal in MN for recreational purposes (or medicinal, for RLS), so when my supply is out, I'd have to travel to replenish.

JimmyLegs44 wrote:Thanks, Ann. I worry about doing even more damage to my dopamine receptors, but at some point the potential relief may outweigh that concern. Since a trip to CO a few months ago, I've been taking Marijuana gummies when away from home, and that has helped somewhat, but MJ is not legal in MN for recreational purposes (or medicinal, for RLS), so when my supply is out, I'd have to travel to replenish.

Just what you said. I need sleep. I decided that it outweighs most anything. My life was in tatters - now at least I can hold down a part time job.

I find kratom great for intermittent use but care is required to ensure it is legal where you are travelling to (or that you have a very effective concealment strategy - I took a weekend break to Hungary last year and when I was unpacking on my return discovered I had unwittingly taken a supply of kratom there and back again in an inner pocket of my toilet bag - I shudder to think what might have happened if I had been effectively searched at either airport).

Indeed - In two weeks I am off to Malta for 8 days and will not risk taking Kratom through the airport.
While away I will replace my one middle of the night Kratom dose with a dose of Codeine from my small stash.

I found that alprazolam worked for me for the short term when I was younger. However at my current age the side effects of mental confusion make it an undesirable alternative.

Steve

JimmyLegs44 wrote:Anyone have any ideas of a drug I can take irregularly to deal with my RLS?

Why not L-Dopa? It quickly loses efficiency for some of us, L-Dopa didn't do anything for me when I was taking DAs. But now that I'm on Oxycodone (for over 4 years) I found that 100mg L-Dopa (extended release) is fairly efficient as long as I restrict it to 2 or maybe 3 times a month, and unlike DAs it usually has few side effects as it's basically only a precursor that allows the body to create dopamine.

Personally I would prefer L-Dopa ER over medical marihuana or Kratom. They also elevate dopamine but in a less controlled way. There seem to be less aggrevation of symptoms if dopamine is administered in small doses but consistently for a long time. Just as people augment more quickly from DAs with a short half-life (Ropinirole, Pramipexole) than when the DAs are administered over a long time (Neupro patches or ER versions). But anything THC-based is still illegal in my country so I can't claim any personal experience (discounting a few joints when I was much, much younger ).

All remedies that are not dopamine-based are usually highly individual. Some people report that Taurine, Tryptophan or other amino acids work for them. Instead of L-Dopa you could try other precursors of dopamine (Tyrosine comes to mind).

I found that some chocolate (not too much though) would help me sometimes, contrary to what most other people report (sugar usually elevates RLS symptoms). I may have been deficient in magnesium or potassium, sugary stuff didn't work, so it may have been something besides sugar that is in chocolate, and chocolate is high in magnesium and potassium. Or maybe it was simple lack of energy due to my prediabetes, which would also be consistent with the fact that my RLS got better when I started low carb. (Chocolate ceased to work when I started to eat low carb.) I also tried Gabapentin, Lyrica and benzos but neither of them worked for me.

But that's just the thing, RLS can get worse if you lack just one of the scores of micronutrients, so you might want to try all of them.

L-dopa can only be used infrequently. It will cause augmentation very quickly, in some cases as quickly as a few days. Using it like you do where you only use it 2 or 3 times a month is fine. Using it as a supplement for special circumstances, such as long airline flights or attending a child's recital is also appropriate. Daily, long term use is almost always a fast track to augmentation.

There is also a difference between L-dopa and the other dopamine meds. L-dopa is dopamine and each dose is very quickly effective, but it also loses it's effectiveness rather quickly as it is used up. The other dopamine meds are all agonists, which means that they are not true dopamine, but have the chemical functionality that is needed to interact with the dopamine receptors. They take a bit longer for each dose to take effect but also last longer. This is something like the difference you get by eating pure sugar versus eating a complex carbohydrate. The sugar provides almost instant energy, but the sugar high passes quickly. Eating a complex carb takes a bit longer to provide energy, but the same caloric value will provide energy for a longer period of time.

I would not use Sinemet. I believe that you augment more quickly with it rather than mirapex. .125mg is even a lower dose used for mirapex. Personally, I would use an opioid for those 15 nights or so.
Good luck

Rustsmith wrote:L-dopa can only be used infrequently. It will cause augmentation very quickly, in some cases as quickly as a few days. Using it like you do where you only use it 2 or 3 times a month is fine. Using it as a supplement for special circumstances, such as long airline flights or attending a child's recital is also appropriate. Daily, long term use is almost always a fast track to augmentation.

@JimmyLegs44 specifically asked for something that works 15 nights a year.

Rustsmith wrote:There is also a difference between L-dopa and the other dopamine meds. L-dopa is dopamine and each dose is very quickly effective, but it also loses it's effectiveness rather quickly as it is used up.

Hence the ER portion of my recommendation For me, L-Dopa ER onset is about 1-2 hours, and the effect lasts usually about 6 hours. So taking a dose 1h before I go to bed will hopefully give me 6 hours sleep or more. And it is fairly efficient for me -- as it should be. (There are concerns that 100mg L-Dopa is too much for RLS and lower doses should be efficient too. If it doesn't work for you, you've developed tolerance or are augmenting.) I use non-ER L-Dopa occasionally if I need to deal with serious symptoms in the evening and for some reason I'm can't take a walk, for example if I'm alone with my daughter (she's still too young to be left alone).

In my opinion, the ER version should cause less augmentation and should be preferred whenever possible, and it should be fairly safe for the scenario that @JimmyLegs44 described (usually 2-3 nights in a row, 15 nights a year).

debbluebird wrote:I would not use Sinemet. I believe that you augment more quickly with it rather than mirapex. .125mg is even a lower dose used for mirapex. Personally, I would use an opioid for those 15 nights or so.

Sinemet (which is L-Dopa I think?) and mirapex doses are not comparable at all. For me, .18mg Mirapex/Pramipexole was more efficient than 3 doses of 100mg L-Dopa when I started it. However, as a kid that got seriously burned I'd recommend to stay away from all dopamine agonists, especially Pramipexole, unless you have exhausted all other options. They do cause serious side effects including behavior change and impulse control disorders (you might act like a lunatic without realizing that you changed at all), and withdrawal if you try to get rid of them. The behavioural side effects may take longer than 2-3 nights, but still... Natural dopamine does not have this effect, it's specifically a property of dopamine agonists, and they differ in their side effects profile. For example, Pramipexole is most likely to cause impulse control disorders (by a mile), long-acting DAs like neupro patches have a lower risk.

L-Dopa on the other hand enhances natural dopamine and has none of these side effects. My personal experience is that loss of efficiency comes way before augmentation. (Extended release again, as the dopamine increase is spread out over a longer time.) That is, we develop some level of tolerance before augmentation. First the medication stops working, but symptoms are consistent. Only if you increase medication you'll augment (symptoms worsening). Basically, one dose of L-Dopa should be safe, but if you notice that a single dose does not work anymore then you just switch to a different medication. Of course we do not all react in similar ways to drugs, so this may be different for other individuals. But I think the fact that tolerance comes before augmentation for L-Dopa is consistent with RLS literature, the problem used to be that doctors would start giving high doses of L-Dopa (and some of them still do, unfortunately). This seems to be another difference to dopamine agonists, tolerance and augmentation go hand in hand for DAs but not for L-Dopa.

Opioids and travel, well, make sure you can get them through security if you go by plane. Opioids are fairly safe in my opinion (I take oxycodone myself), but more "invasive" than L-Dopa. A lot of people have serious fatigue as side effects, constipation, a lot of other symptoms. Again I don't think L-Dopa has any of these side effects except in very rare cases. So I'd prefer L-Dopa over opioids because of side effect considerations.

My (very personal) preferred order to go through on-demand medication would be as follows:
(1) L-Dopa
(2) other supplements like Taurine or Tryptophan (if they work)
(3) Opioids/THC
(4) nothing for a very long time.
Actually, L-Dopa first if you already are experiencing symptoms and want to get them under control, and other supplements first if you are still in prevention mode.

Remaining options that I wouldn't really recommend:
* iron (it is the best option overall, but not applicable in the setting "get relief for THIS one night")
* dopamine agonists (see above)
* lyrica (which also has serious side effects, and is supposed to work gradually if you take it for a few days)

But as usual <disclaimer> I'm not a doctor, and internet diagnosis are unreliable. Kids don't do this at home <end disclaimer>

Opioids and travel, well, make sure you can get them through security if you go by plane.

Travel with "small quantities" of opioids for personal use is only an issue if you find a customs inspector who is not familiar with the local regulations. Even countries with very strict laws against drug trafficing will allow small quantities of opioids for personal use. In those cases, it is a good idea to have a copy of your prescription, to carry the medication in the bottle from the pharmacy and to only carry a few more pills than you need to get you home. I always carry enough pills to allow for a day or two of delay in travel but not much more. If I was carrying 90 days of meds for a 3 day trip (according to my airline tickets), it would be very difficult to say that all those pills were for my personal use.

However, traveling with any form of THC will create problems if an inspector (or drug dog) finds it. It doesn't matter if it was purchased legally at the point of origin or you have a prescription, almost all government entities around the world will still feel that it is illegal for an individual to transport any quantity of THC.

Rustsmith wrote:
However, traveling with any form of THC will create problems if an inspector (or drug dog) finds it. It doesn't matter if it was purchased legally at the point of origin or you have a prescription, almost all government entities around the world will still feel that it is illegal for an individual to transport any quantity of THC.

Yes ... unfortunately travelling with THC products can lead to huge problems and is probably the biggest problem when you have RLS, need THC and are forced to travel.

However, depending on your destination there are still a few possibilities:

Sativex, the cannabis based spray containing THC & CBD in a 1:1 ratio is approved in almost all western countries. With a legal prescription it is possible to take this medication with you in many countries. The same is possible with Dronabinol and Marinol prescriptions.

Within the EU, it is possible to travel with medical marijuana in all those countries who have medical marijuana laws. And as far as EU laws go, when you have a prescription from a EU country like Germany, it is possible to take that medication into other countries. But there are quite a few grey areas and special ruleset when it comes to medical marijuana.

But I guess in the U.S. where marijuana is illegal on a federal level, you can't even travel legally from state to state. But as long as you don't need natural cannabis flowers and Sativex alone works for you, it might be the best option for travel.

Unfortunately, Sativex is still not legal in the US. Doctors cannot prescribe it and it cannot be stocked by pharmacies. The federal government considers anything with a THC content over a few tenths of a percent to be in the same class of "dangerous drugs with no medical use" that includes heroin and meth. Even cocaine has a lower legal classification since it has medical value under some very specific circumstances. This is incredibly stupid and is a current topic of political debate that will probably continue for many more years. It is a Catch-22 situation. Research is required to demonstrate the medical value to get it reclassified, but cannot be conducted under the current regulations. Research in other countries can be considered, but this cannot be the sole source of information. From a practical, if not legal, standpoint at least some of the research required has to be conducted inside the US. Academic institutions even in states where marijuana is legal cannot do research that uses it because doing that research would endanger federal funds for research in all other areas as well as federal assistance for students. The Pharmacy department at the Univ of Colorado is starting to do some research, but all work must be done at an off-campus facility that is not owned or leased by the University and all cannabis consumed must be supplied by the test subjects. The researchers can run tests on you and can watch you consume your product, but they cannot be involved with anything that involves the marijuana itself, including even handling it or storing it for you. So much for being able to do double blind tests.

And you are correct that it is illegal to transport any sort of marijuana product across state lines, even if marijuana is legal in the states on both sides of the line (for example California and Oregon). The federal government has been forced to ignore enforcement of the federal laws inside states where it has been made legal, but federal law applies to the transportation of everything between states and that even includes doing so in your own car.