In researching THC use and RLS, it is described as a dopamine agonist. Is there evidence it can also produce augmentation? . It works very well for me and does not produce the side effect that makes Gabapentin, Lyrica or opioids unacceptable options. However I can’t use it much because of my line of work
I had been on Pramipexole at low doses( 1/2 of a .125 mg immediate release) in the past and after 3 years increased to 3/4 of a tablet and stayed there with no major issues. for another two years. I gradually got symptoms earlier at night, but nothing else. My doctor felt I needed to stop and I did with little tapering and only two weeks of rebound. The earlier onset didn’t change, so the doctor is on the line whether it was augmentation or just natural progression that was already happening before I started Pramipexole. Prior to that I tried and could not tolerate Gabapentin or Lyrica.I have done iron supplementation as my ferritin was 65, but even after managing to get it over 90, I had no improvement. I’ve been off Pramipexole for almost a year now with no further change in symptoms. My neuro and I , have had discussions about restarting back at the lowest dose, as it worked well and he considered the augmentation mild. I need to keep working for at least one to two years d so o maybe I can restart cautiously and then use THC thereafter. At this point I only get 3-4 hours of interrupted sleep a night. If it weren’t for hyperarousal, I doubt I could function. I’m still on the fence on restarting.
It was augmentation. Natural progression doesn't cause it earlier at night. However yes I would think you could start it again as long as you keep it at that low level since you can't use THC until you retire. And then if you suffer augmentation you could get off it. Did you ever try dipyridamole? Also you need to get your iron over 100 and preferably more.
my RLS got earlier in the evening even before the DA. It went from starting at around 1:30 am and drifted gradually to 10:30 pm. On Prami after 5 years to 9:00 pm. After I stopped Pramipexole it was stable but it the past few months, after almost a year off Prami it has lasted longer, now 9pm’s to 5 am. Is there delayed augmentation?
Actually my bad, augmentation is when it starts earlier in the day not evening so you probably didn't even suffer from augmentation. So you can definitely go back on the pramipexole.
I am trying to get my neuro to try Dipyridamole, but he won’t prescribe it as he has never used it before in this situation. It make sense to me given my hyperarousal. My PCP is hesitant also. I’m trying to get a referral to a sleep medicine MD who treat RLS, but the insurance company is dragging their feet. I suppose I should restart Prami while I wait around. Could be months before I get the referral and then wait for an appointment. My insurance company doesn’t cover Stanford program . I called them to see how much it would be out of pocket and it was very expensive and out of my reach unfortunately. Next year I can switch to a PPO insurance that covers it
It is sometimes overlooked that a certain proportion of people can tolerate Pramipexole well without augmentation, or at least by keeping the augmentation within limits. I forget the percentage exactly, but I think it’s 20% or 25%. In my case I started on 250 mcg of Pramipexole in 2014 and gradually increased over four years to 1500 mcg. After some time at that level I had augmentation and under my neurologist’s advice I went cold turkey (a fun experience) and used only Gabapentin for a few months while the augmentation resolved itself. I then began the whole process again, starting at 250 mcg in 2019 and gradually increasing. I am now back up to 750 mcg after another four years but this time unfortunately I’m having to use Gabapentin as well. However, my very serious RLS is well controlled and I am functioning well, except that I become very tired around 5 pm and need a nap. I judge that this is due to the Gabapentin, or maybe it is just normal for a 71-year-old. 😀
The point of all this is that if you have no other choice, you might consider testing whether you are one of those like me who tolerates Pramipexole reasonably well. The doses of Pramipexole that you tried were minuscule by the standards of my neurologists at the University of Iowa Clinic, in whom I had great faith. Unfortunately I am no longer in Iowa, but my new doctors are also willing to experiment, given the seriousness of my condition. So you might consider trying larger doses of pramipexole, and working up as high as 1500 mcg. ( Shock Horror 😁 )
I do appreciate that the wise counsellors on this site consider Pramipexole very dangerous, out of date, and very much to be avoided, and I’m sure they know what they are talking about, but strangely enough it works for me and as a last resort you might discuss it with your neurologist.
I take 250 mcg at 1 pm, another 250 mcg at 4 pm, and another 250 at 7 pm.
I augmented on pramipexole, was on a low enough dose that my sleep Dr had me just stop. It was the worst 10 days of my life, and I wanted to die. Like all chemicals, these drugs affect each of our brains differently. Pramipexole was considered such a miracle drug that they stopped the studies before augmentation could happen (a mistake in truth, I believe, nothing underhanded).
Everything I've read is that if you've augmented then that drug is done for you. However, I doubt that they know exactly what happens with each person. Just titration down sloooooooowly if you have to! 3 years after augmented tation, I still suffer from neurological issues that neurologists don't take seriously. I have been a bookworm since age 4; I have not been able to focus on a written book long enough to finish it, though my frenzy over the loss has boosted book sales by a few hundred books or so. I keep trying, hoping that comes back. I suppose the moral of the story is that it's not a zero-risk deal. I wish you luck!
(I'm now mostly RLS maintained with Horizant, classic gabapentin, clonazapam, and Norco. I had 3 iron infusions about 18 months ago; that helped a lot. I get breakthrough RLS 1-2x/week.)
This is not for you but I am posting here because I don't want others to think 750 mcg (or 1500 mcg) is the correct amount for RLS. According to the Mayo Clinic Updated Algorithm of RLS the acceptable maximum daily dose is 0.5 mg (500 mcg) in most patients.
I have been using CBD oil which is allowed without a prescription, since it has only .3 % THC. It is not perfect but that could be because I don't take enough of it. I take 2-4 drops under my tongue for 30-90 seconds when things start to kick in when I go to bed, and then I will wake up in the night and have to do that again once or twice. But at least I am getting some solid sleep. I don't want to take more because I am on a blood thinner, but if you don't have that problem, you might try more. I do think it makes me sleepy during the night, but I have not had any other problems taking it. But of course everyone is different, so we all have to experiment. Also I did try increasing my iron levels by making sure to take the iron with vit C and two hours after /one hour before a meal. That may be helping also. Good luck.
Try switching the THC to CBD. It has less than 3% THC and doesn’t show up on a drug test. I find that it works well for my RLS. As with THC you want to start with a lower dose and work your way up to the dose that works the best at stopping the RLS. I order mine from Lazarus Naturals. All their products are 3rd party tested. If you are a veteran you can get 60% off all their products. They also have a Full Spectrum sleep capsule that has CBD/CBG/CBN (35mg) in it. I take one of those along with 50 mg full spectrum CBD softgel cap. I’ve been using it for over three years. It works 90% of the time. On the nights it doesn’t quite do the job I will break down and take 15 mg THC gummy. I’m like you, I have tried every medication and had to stop because of side effects or augmentation. Personally I switched from using THC all the time to CBD, not because of a job as I’m retired, but because I hated the feeling of not being totally with it the next morning. CBD, even with the small amount of THC I use occasionally doesn’t make me feel that way in the morning. Hope this helps.
I do CBD/N now as it is all I can do while I am still working. It doesn’t touch the RLS at any dose. If I am on vacation I will add 3 mg THC to the CBD/N and that does the trick. Once I retire I won’t have to worry about it. Just another year. I’ll restart the Pramipexol which works at very low doses for me. I’ve been off it a year and had little to no augmentation, so that’s my plan fir now
Unfortunately the THC is short lasting, increases sleepiness & stops us driving vehicles. I tried Medical Marijuana last year on prescription but after one week I was still very sleepy, drowsy and unable to drive so I was disappointed as I had pushed for someone to prescribe it for RLS in Western Australia. I'm now weening slowly off Pramipexole after 20 years & sadly I had had to resort to Pregablin which I detest taking. We are all struggling to find quality of life aren't we? xx
you need totry different strains. The one I tried a while back did not make me drowsiness and lasted all night. Woke up without grogginess. It was an Indica strain. I took it by tincture
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