February 18, 2019 at 10:56 am #13747Lou HevlyParticipant
I suffered slight RLS symptoms for the past year, but then they started getting worse and affecting my sleep. I read that non-Parkinsonian RLS is treated with the agonist pramipexol, so now I’m taking 0.26mg of Mirapexin daily and all’s well; the RLS is completely gone.
I’d taken ropinirole, another agonist, in the past, not for RLS but just for general symptoms, but it gave me edema. We’ll see if the same happens with Mirrapexin.
February 18, 2019 at 12:42 pm #13750
hi lou, i am glad you found relief for some of your symptoms. there is so much trial and error trying to find something that works and what works for some does not work for others. I didnt have RLS, but I was on ropinerole for one day, it made me so ill I stopped it after one dose.
February 19, 2019 at 2:20 am #13753Lou HevlyParticipant
Have you heard this one?
“When you’ve seen one case of PD, you’ve seen one case of PD”
February 19, 2019 at 6:14 am #13763
yes, no truer words have been spoken, we are all so different in how PD manifests itself in us.
December 3, 2019 at 9:25 am #16826Toni ShapiroParticipant
RLS comes and goes. It can drive me to tears. It feels like I am losing my mind and I move my legs violently at times. I will ask my neurologist about that medication. Thank you.
December 3, 2019 at 4:58 pm #16841
toni, the Neupro skin patch is another agonist and it bypasses the stomach, so less chance of nausea, the agonists potentially do have OCD (gambling, shopping, etc) side effects, so beware if you go down that path. luckily I do not have that side effect
December 16, 2019 at 12:44 am #17155Curtis NelsonParticipant
I have been using .5 mirapex for several years for restless legs. About once a month it would not work. Then 300mg neurontin was added , now both work very well. Mirapex .25 mg has been added during the day to see if it helps with my stumbling. Some have talked about internal tremors, how they discribe how it feels could easily pass for restless legs. I’m assuming they are a different thing?
December 16, 2019 at 6:34 am #17157
Curtis. I find it very difficult to describe internal tremors. It is not just the legs for me. My head and upper body are involved too and there is no visibility to the eye when I have internal tremors.
December 29, 2019 at 12:04 pm #17299Toni ShapiroParticipant
I wrote earlier about how RLS drives me crazy….sitting on a plane or trying to get to sleep is killer. While reading other peoples stories on the form I came across INTERNAL TREMOURS. I had never heard of that before. It was a relief for me to have a name for something I have been experiencing for years. I used to describe it as having ginger ale bubbling in my veins and throughout my whole body but mostly in arms and legs. I am thinking my RLS is worse because I am sure I have internal tremours. I looked it up as a topic but couldnt find anything specific to it. I so appreciate this form. Knowing its a real thing helps me.
December 31, 2019 at 10:23 am #17317James HarveyParticipant
I have what I think of as “vibrating legs,” i.e., the motor nerves seem to trigger creating a brief vibration of one (either) leg. It sometimes happens every 5 or 10 minutes when I’m lying in bed trying to sleep. I do not have a sense of some RLS symptoms I have read about, i.e., a feeling that I need to move my legs or a sense of something crawling in my legs. I may try a low dose of mirapex again. My experience with mirapex in the past is as follows. At that time it was prescribed for hand tremor.
Starting Dose: 0.125mg 3 x per day for 1 week Started: 9-16-16 Stopped: 2-14-17
Full Dose: 0.25mg 3 x per day
Took the starting dose for 8 days. On day 9 (9-24-16) started the full dose. Took the full dose for 7 days (through 9-29-16). Had adverse effects. Then went back to the starting dose through 10-13-16. Then took 2 pills per day through 11-12-16. Then took 1 pill per day through 2-14-17.
Benefit: none noted
Adverse: About day 13 (9-28-16) I had sudden daytime sleepiness on at least two occasions in the late afternoon in a way that seemed abnormal (i.e., it was like momentarily losing consciousness). This occurred when I was driving on an Interstate — I woke up to find myself drifting out of my lane. Also had balance problems when doing balance exercises on one leg (but not when walking). Also had obsessive hypersexual thoughts starting about day 13. The sleepiness and balance problems went away when I went back to the starting dose. The obsessive thoughts went away a few weeks after I went back to the starting dose.
December 31, 2019 at 11:36 am #17316DaveParticipant
A Cautionary tale. Be very careful with any Agonist. It stimulates a receptor that also causes OCD,(Gambling, shopping, etc.) It can also lead to mood swings. I know 3 others who had similar reactions. Anyone taking these meds should let who ever is helping them, know about these behavioral changes and monitor you. This can be very costly.
I’ve had R.LS. all my life, but I’ve tried 2 different agonists. Both made me nuts.
July 17, 2020 at 3:59 pm #18984Karen FellParticipant
I am 65 yrs old and have been suffering from Restless Leg Syndrome for 10 years. It has worsened in the last 6 months resulting in most nights only getting 2-3 hrs sleep. On Jul 1st I started taking Sinemet 25/100 taking 1/2 pill one hour before bed and it has been a miracle drug for me. Restless Leg gone and I sleep the whole night. I wake up and its light out and I can’t believe it.
However, 5 days after starting the Sinemet I am experiencing joint inflammation. Every day it moves to a different location and it varies from slight pain/stiffness to excruciating throbbing pain. For example: both shoulders, one knee, one ankle, both wrists or sometimes just one, fingers. I am now taking Advil once every 6 hours and the occasional Tylenol to help manage the pain. Today for the first time my throat is so sore I can hardly swallow. Taking the anti-inflammatory has helped slightly.
Could this be a side effect from taking the Sinemet?
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