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RLS Hail Mary

Sleep Health | Last Active: Jul 2 4:09pm | Replies (13)

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I am 74 and too have had RLS since I was 35. In about 2004, I was prescribed pramipexole which worked wonderful. After approx 5 years, symptoms began earlier in the day and sleep was interrupted with increasingly more intense symptoms. So the dosage was increased, along with split dosing for several years. In 2019, I was taking 1.5-2 mg/day. I have since had iron infusions, added gabapentin, then to pregabalin, and very slowly reduced the Pramipexole down to .375 daily. I recently took Buprinorphine 1/2 of 2 mg pill. I experienced all the side effects-nausea , dizziness, etc. But read that sometimes it takes a couple weeks for your body to adjust. After 9 days, I thought the side affects had eased and my RLS symptoms disappeared. I was able to sleep. But on the 10th day, I ended up in the ER with tachycardia. I think it may have been exacerbated by dehydration, also. I discontinued the Buprinorphine. It took 2 weeks before the extreme anxiety subsided. I am now back to taking .375 Pramipexole and 50 mg Pregabalin 2 x /day. with 4-5 hours sleep at night. I can live with that, but my experience is that it won't stay that way. I have concluded it will always be an endless effort to manage symptoms and sleep.
I have a sleep specialist at Mayo that has been extremely helpful. My other doctors are not knowledgable and have often suggested mediicines that I know would likely worsen my RLS.

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Replies to "I am 74 and too have had RLS since I was 35. In about 2004, I..."

@cc148

My story somewhat similar. 73 years old now. When younger, just used pain killers. Aspirin always worked well for me. Middle age had an unrelated panic attack.
As part of recovery from that started Klonopin. Stayed on that for 10 years or so. New doctor and it took me a year of hell to get off it. Then started up to 12 aspirin a day. Then Mirapex. It was a miracle for me for 10 years. Increased dose to 4.5mg a day (really!). Narcolepsy, couple Cataplexy episodes. Terrible side effects, but I dealt with it. Now switched to Gabapentin. Took weeks for it to build up in my system I guess. Was up to 3600 gabapentin, not a typo.... but my doctor freaked out. Stuck with it, now taking 1800. For me timing is critical. Taking 300 at 230pm, 600 at 430, 300 again at 630, 830, and at 1am when I usually wake up. Sometimes add 1000 acetaminophen and 600 ibuprophen if I have a break through. If I really get desperate, I take a quarter of a oxycodone that I guard with my life. That works incredible for me. No doctors here in Green Bay know what to do with me. Finally got a referral to a sleep doctor in Madison who didn't know anything either but did what I asked and wrote a prescription for Horizant. Now battling with insurance company to cover it. Found a pharmacy in Bimidji Mn. for $55. Truax Pharmacy. Hope to start it a couple weeks. Also taking 400 magnesium, and still .125 Mirapex and had IV iron injections. I recommend to everyone now to start using free IA tools to help with your medications, dosage, timing and conflicts. It's amazing. I like Chat GPT and especially Gemini.
Finally, for me, alcohol is a total trigger. Can't take...it sucks! But for me caffeine seems to help. Hope this helps someone. Every night is still more or less an adventure for me. Hoping Horizant is the answer.