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New to Group

Posted: Tue Apr 02, 2019 11:28 am
by flipper

I am new to the group. I have had RLS for over 10 years but never realized I had until about 5 years ago when I finally went to see a doctor. I am currently being treated at the Neurology department at Geisinger in Danville Pa. My RLS affects me all the time, not just at night. I went through many meds and none seemed to give any relief. Finally they prescribed Mirapex .25mg 3x's a day. That worked for about 6 months. They bumped it to .5mg 3x's a day. Again that worked or about 6 months. At this point, I noticed weight gain, memory loss, and drowsiness. Now I am on 1MG at night only. Here we are about a year later and it seems like it is starting to fail again. Some nights I take my pill and suffer for about 2 hours. I do not know if I tire myself out or the meds finally kick in. After a visit with the Dr. he added 250MG Valproic Acid as needed up to 3x's a day. Seems to help a little.

I did notice that if I drink a beer or mixed drink it has a negative affect on me at night.

I am now reading a lot on the CBD Oil and its positive affect on RLS. Has anyone tried it?

Hope to learn lots from this group. We are driving to Florida from PA in October and I am dreading the trip because I know my legs will bother me every so many hours.

Thanks for listening...

Re: New to Group

Posted: Tue Apr 02, 2019 12:12 pm
by stjohnh
Hi Flipper, Welcome to the RLS community of fine folks. The cumulative experience and knowledge of the people on this forum is unmatched. You will find people who have had any and all exeriences with RLS. You will find empathy and compassion in an area where many patients have almost no one in their lives who gets how terrible this disease can be.

Perhaps you can tell us a bit more about your RLS journey... Does it affect only your legs? Did it always bother you in the daytime? Which medicines and doses were you originally given? Have you ever taken opiods? Gabapentin? Have you had any iron treatments and what is your ferritin level (a test that measures blood iron levels)? Have your doctors ever discussed augmentation with you?

The reason for the questions about augmentation is that you are on very high doses of Mirapex, much higher than is usual for RLS. Augmentation symptoms include involving more of the body than just the legs and symptoms that occur during the daytime.

Lots of people here have tried CBD oil, myself included. It doesn't seem to help much for most people.

Re: New to Group

Posted: Tue Apr 02, 2019 12:40 pm
by flipper
My RLS only affects my legs/ankles/feet. It started out with my knees bothering me in the car after 3+ hours of driving.

I have been prescribed Gabapentin but cannot take it. I get really zoned out on it. When I first got it, I took it in the afternoon, forgot I took it, took another one and went archery hunting. I fell asleep and woke up in the pitch black and did not know where I was. Had to pull out my phone and use google maps. I was messed up the rest of the night. From that point on, I stopped taking it.

Iron, here is the funny part. I have high ferritin, I have to go get blood taken about 2 x's a year to get it to a normal level.

It is just my legs that are the issue.

Re: New to Group

Posted: Tue Apr 02, 2019 12:51 pm
by stjohnh
Did it always bother you in the daytime? Have any of your doctors discussed augmentation? So the only medicines you have ever taken for RLS are gabapentin, Mirapex, and valproic acid, is that correct?

Re: New to Group

Posted: Tue Apr 02, 2019 2:26 pm
by flipper
yes, always bothered me in the daytime.

There was another drug they had me on when I first went to the Doctors but I cannot remember what it was. :-(

But the ones listed are correct

Re: New to Group

Posted: Tue Apr 02, 2019 4:52 pm
by Rustsmith
Welcome to the group.

First off, 1mg of Mirapex per day is a large dose for RLS. Although Parkinson's patients can take more than 4mg/day, the max recommended for RLS is 0.5mg and one expert even says that the limit should be 0.25mg. You description of your escalating dose sound a lot like you are experiencing augmentation. Augmentation is a side effect of dopamine agonists like Mirapex that only occurs in RLS patients. It is a condition where the medication eventually starts making the RLS worse, which requires a higher dose, and so on until the person is taking far more than they should. This opens up other side effects, which it sounds like you also experienced. The major problem here is that many, if not most, doctors know virtually nothing about augmentation and therefore know even less about how to get a patient off of the med. You can learn a lot more by reading through the info in our Augmentation forum and you will find added info about augmentation on the Foundation website

As for CBD, that is something that appears to vary. Some people say that it helps with their RLS and others (like me) find that it does not. I use an edible that contains THC that helps me sleep, but neither THC or CBD helps with my movement issues. Also, if you are experiencing augmentation, you are going to need something a lot stronger than CBD.

Re: New to Group

Posted: Wed Apr 03, 2019 6:09 pm
by flipper

Thank you so much for the explanation. I was reading about augmentation but did not understand what it was.

Is augmentation permanent?


Re: New to Group

Posted: Wed Apr 03, 2019 6:39 pm
by Rustsmith
John, in some ways, augmentation is a side effect of taking a DA. Unfortunately, it is permanent in that you will rapidly augment again if you try to go back to that DA. Some are able to switch between meds where they limit the use of that DA to no more than 3 or 4 days in a row. So recent research also seems to point to the fact that being augmented causes permanent changes to our RLS, but that finding is still very preliminary.