Restless Legs Syndrome (RLS) Discussion Board

Well, my initial thoughts are that cannabis has been used by many many people for many years and so far there doesn't seem to be any known increase in bleeding problems. That said, there is an unfortunate lack of scientific studies regarding this and many other questions that arise with using THC. T...

I guess I'd echo your experience. I am functional most times, but rarely rested and sometimes still crappy. Not sure it gets better than that for some of us. I keep trying, though! This is exactly the symptom where dipyridamole seems to do the best for me. Maybe the next time you see Dr. B you migh...

Mike, I don't think your conclusions are entirely true. Yes, many people on dopamine agonists will have augmentation. But not all, and keeping dose low and ferritin high deceases that likelihood. The general recommendation for people on dopamine agonists alone is to take an amount that makes living ...

Hmmm... the RLS advice is simple, get more IV iron. Seems to me that a hematologist is the way to go so that you can get it safely. The high erythropoitin is a problem, the hematologist should be able to help. Worst case I suppose is surgery to remove the nonfunctional (but still erythropoitin produ...

Shari, I echo Steve's comments. With the obviously complex medical situation you have, including a large number of medications that can cause interactions and problems, I fully agree that seeing an RLS specialist is your first order of business. It certainly sounds like augmentation is a major probl...

I haven't used CBD oil, however I have used a high CBD edible which contains 50/50 CBD/THC. It did not help either my sleep or my urge to move. I subsequently found that regular edible marijuana with approximately 10 - 15 mg THC per dose helps my sleeping considerably, although it doesn't do much fo...

When I was withdrawing from mirapexin (a dopamine agonist like your neupro) my sleep consultant was adamant that I reduce gradually but like Holland says it did prolong the agony. Having said that some people have posted about dopamine agonist withdrawal syndrome which apparently can result from st...

I created this thread 4 years ago and I have reallly crashed and burned this time. ...It never gets better. Dang it I can never win, I feel so terrible. ... Kick me while I’m down son and and stab me in the heart, good lord this just isn’t fair at all. Not a happy Father’s Day ever again. EeFall, y...

Veldon, some people are very sensitive to gabapentin and require much lower doses than usual. I take 100mg at 7:30pm and 50mg at 11. Any more and I feel like you do. It may be worthwhile to continue it at a much lower dose.

Brian, welcome to the RLS Foundation community. Sounds like you've already looked around on the board some and so you have probably found out that there are lots of folks that have had somewhat similar problems to yours, although I don't remember anyone with Huntington's disease. To answer your ques...

Yay !!

Your next day sleepiness may have several causes, but the simplest to deal with is due to gabapentin. If caused by that, just reducing the dose may help. It is an odd medicine in that the effective dose varies wildly from person to person. I take 100mg at 7:30pm and 50mg at 11. Anything higher and I...

Hi SleepyJudy, welcome !!! It sounds like you have relatively mild RLS. This means that you may be a good candidate for gabapentin or its relatives, Lyrica or Horizant. They don't cause augmentation. Be sure to get your ferritin checked if you haven't already. The dopamine agonists are indeed used t...

Yay!!

drFred wrote:... I also have RLS for the past year or so (or possibly neuropathy?)....

it sounds like it's not entirely clear that you have RLS. Certainly if you don't have RLS, that would explain why the medications that you have tried in the past have not worked. What are your symptoms that suggest RLS?