u/Only-The-ShadowKnows

Anything else I might try?

RLS diagnosed 2004. I recognize that y'all aren't sleep medicine docs. I'm just looking for ideas. I want to get off Mirapex because of tolerance, possible augmentation, and significant impulsive-compulsive syndrome. I always talk with my sleep medicine physician about alternative treatments.

EDIT: I edited on 4 Oct 2026, 13:35 GMT/UTC, to add a glaring omission (big goal is to get off Mirapex), and add a couple of things I forgot, e.g., getting off Effexor.

Current Treatment - All prescribed by board-certified sleep medicine physician (MD)

  • Gabapentin 800 mg
  • Methadone 15 mg
  • Mirapex (pramipexole) 0.375 mg - I have had to take as much as 3.0 mg but I have been able to reduce over the past several years due to several factors.
  • Nidra TOMAC System (Tonic Motor Activation) - helped me reduce Mirapex to 0.375 (from 0.50).

Adverse effects of Mirapex

  • Tolerance, possible augmentation
  • impulsive-compulsive syndrome: dream-like compulsive overeating at night - I take Mounjaro which has helped me lose 15% of body weight but Mirapex completely cancels the therapeutic effects of GLP-1 at night.

Comorbid conditions

  • 2009 - obstructive sleep apnea (mild), use BiPAP religiously although I take off at night while asleep (I've tried all mask types, CPAP & BiPAP); I've had 6 sleep studies over the years.
  • 2012 - idiopathic hypersomnia - diagnosed correctly, i.e., polysomnogram (PSG) followed by a daytime Multiple Sleep Latency Test (MSLT)
  • 2013 - type 2 diabetes

Note: Year diagnosed.

Tried but did not work at all or only a little - all prescribed by board-certified sleep medicine physician (MD)

  • Iron infusion - didn't help but was worth a try
  • Tramadol - helped a little, methadone 15 mg is significantly more effective for me
  • Lyrica - adverse effects
  • gabapentin enacarbil - adverse effects
  • ropinirole (Requip) - minimal therapeutic effects
  • melatonin - adverse effects
  • Klonopin (clonazepam) - didn't help and made me groggy in the morning (it was the lowest starting dose)

Not tried:

  • rotigotine patch

Alternative treatments

  • THC-9 2.5 mg (gummies) - helps me sleep through the night and don't need as much Mirapex, but I'm too tired during the day
  • magnesium supplements - I take highest recommended dose but does not help RLS
  • massage therapy - feels great overall but does not help RLS

Exacerbating medications

  • Effexor - I did not have RLS until two years after I started taking an SSRI. Research shows SSRIs & SNRIs (like Effexor) aggravate and maybe even cause RLS. My sleep medicine doc, who was also a psychiatrist, helped me wean off Effexor. It took 10 months but I was able to reduce Mirapex by 50%.

Lifestyle changes

  • No more than one standard drink 2-3 times/week
  • Reduced nicotine - quit cigarettes 2021; vaping helped me quit (along with several other things); I have recently reduced overall nicotine from 60 mg/day to 40 mg day - has helped some, goal is to quit completely
  • Reduce caffeine from 1500 mg/day to 400 mg day - definitely helped
  • Walk for 40 minutes 5x/week - helps some
  • Sleep hygiene - I try hard but it's a challenge b/c I wake up frequently and am tired during day

Goals:

  • No nicotine at all
  • Keep working on improving sleep hygiene
  • Get off Mirapex
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u/Only-The-ShadowKnows — 12 days ago