Finally off Mirapex!

[BeachGolfer]

I’ve been reading posts on this forum for 7 months without posting. Now I want to thank you all for being there for me to read every morning or in the middle of the night. I’m 70 years old and I first had symptoms of RLS about 5 years ago. For about 1-2years I thought it was just insomnia and tried every sleep and anti-anxiety medication to no avail. I finally googled “restlessness “ and a light bulb went off! I saw that opioids were used for treatment. I took a Percocet 5mg. that I had leftover from past knee surgery and voila I had a beautiful night’s sleep! My internist was willing to prescribe it ( this was before the current Opioid hysteria). After about a year I thought I should try Mirapex rather than stay on an opiod. What a mistake! My neurologist prescribed 0.5mg. as a starting dose! I wish I had been reading this forum before I went down that road. After 3 years I started augmenting and developed the side effect of severe compulsive behaviors. One month ago I started weaning from Mirapex 0.05mg. It was a month from HELL! Even using Percocet 5mg. To help with weaning I had nights with zero sleep and night after night of only a few hours of sleep. I felt like someone trying to get off heroin! To those resistant to opioids I say that for me they have been a godsend! I’m fortunate that my neurologist was willing to prescribe it! I’ve now been off of Mirapex for two nights and now only taking Percocet. Now I have to decide if I want to try Neurontin. Again, Thank You to all in this forum who offered support for RLS sufferers. Without you, my supportive husband and my neurologist I could never have gotten through the weaning off of Mirapex.

[Joolsg]

Well done for getting off mirapex. You describe it well- withdrawal is hell and more difficult than withdrawal from heroin.

It can take months for the withdrawal symptoms to finally settle down. If the percocet is helping- stay on that for the time being. If not, follow all the recommendations on here about getting blood tests, making sure serum ferritin is above 100, taking magnesium at night, avoiding anti histamines ( & cough medicine) and anti depressants.

You can then start to slowly add Gabapentin or pregabalin to see if they help your RLS.

Often 2 meds at low dose can work better than one at a higher dose.

Hope it settles and you get good nights sleep soon.

[BeachGolfer in reply to Joolsg]

Thanks for your reply! My Ferritin level is over 100. Magnesium Spray doesn’t seem to help unfortunately. No foods seem to trigger symptoms except, unfortunately, alcohol 😥.

[Joolsg in reply to BeachGolfer]

It took me about 6 months to find a combination of meds that worked for me.

I started on Neurontin ( Gabapentin) and tramadol but they didn’t help much and I had many side effects on Gabapentin.

I am now on Pregabalin (Lyrica) and OxyContin and I get 80-90% coverage so I think that’s regarded as very good.

I hope you find the combination that works for you.

[Zbirth1]

Way to go Beachgolfer! We are tougher than we think. I’m 30 days from my last mirapex. I had 4 days that were ok but then it roared back with a vengeance & I’m wishing for a medieval stretching rack to pull & untwist just about every muscle in my body. I hope the worst is over for you & you can enjoy some peaceful slumbers 😴😴

[BeachGolfer]

I’m writing to give an update to what has happened since I got off Mirapex. Since Neurontin seems to help many RLS suffers I thought it was worth a try if it could get me off of Percocet 5 mg at night. Unfortunately both Neurontin and Horizant caused severe insomnia ( go figure!). I’d sometimes only sleep in 10-15 minute intervals. Torture! Now I am happily on Percocet 5 mg about 2 hours before bedtime and Xanax 5 mg. to sleep (2.5 mg wasn’t enough).The Percocet totally relieves the RLS and the Xanax helps me sleep. The first night I slept 10 hours!! Before Xanax I used Valium 7 mg. for a few days and that too allowed me to sleep about 7 hours. I’ve finally found the perfect combination after about 2 months of using by body as a nightly science experience! Sleeping happily 😴😴😴

[Hidden in reply to BeachGolfer]

That’s great news Beachgolfer! I’m happy for you!

[BeachGolfer in reply to Hidden]

Thank you!!! 😊