Severe RLS solved for me

The following is a true story without embellishment or exaggeration.

I’ve had RLS for 35 years now. It got worse over time and is very severe now at the age 69. It is the worst RLS symptoms my sleep doctor has seen being in the top 1% of severity from here experience.

In the years preceding finding my current sleep doctor I was getting three to four hours of sleep a night. I tried every RLS medication out there (with one exception explained below). Gabapetine and Requip were zero percent effective. OTC pain meds like aspirin, acetaminophen and ibuprofen did nothing. Tylenol PM and others like this wired my eyes open. High doses of magnesium also did nothing. I was tested for low iron. This was normal but I took iron supplements just the same. I then found a doctor who prescribed Pramipexole. I started out at .375 mg and got enough relief to sleep about six hours per night for four or five nights a week. What a relief to get some restful sleep after years of struggle and misery. I shelved my plans for moving to Oregon for doctor assisted suicide. Yes, it was honestly that bad for me.

Over the next years the Pramipexole worked well but I had to gradually increase the dosage as augmentation set in Eventually I was up to 1 mg/day (taking eight .125 mg tablets) but the effectiveness had decreased significantly. Taking even higher doses was having negative side effects with no RLS reduction benefits. At this point I was back to four hours of restless sleep per night. I stated augmenting the Pramipexole with several ounces of alcohol at around midnight to 1AM just so I could pass out and get some sleep. This continued on for about another year with varying effectiveness. The trajectory for this regime was bad, obviously not a good long term solution. Completely sleep deprived, drinking on a regular basis, legs thrashing when I laid down, pacing endlessly most of the night to get relief, only to fall into a fitful sleep at two, three or four o’clock in the morning, sometimes seeing the sun rise before collapsing into exhaustion. Emotionally I was a wreck, would break out crying in despair, no sex life or relationship with my wife. I started once again planning my move to Oregon for physician assisted suicide. I could no longer live like this.

Enter the solution for me. Miraculously I found a sleep doctor/specialist who dedicates her professional life to this affliction. During my initial visit she took an hour and a half listening to my RLS journey and asking probative questions. As noted above I had tried everything and I was at the end of my rope. Doing due diligence she ordered the normal tests, a sleep study (which was an abysmal failure since I didn’t sleep) and started me on the normal medication regimen (Requip, Pramepexole, Gabapentin, magnesium etc., etc..) all to verify that nothing worked. Finally, as the medications of last resort, she prescribed Neupro 2mg/24 hour patch, 5 mg methadone and 300 mg of Gabapentin daily. The patch stays on for 24 hours and the Methadone and Gabapentin are taken after dinner. After some trial and error the dosages were increased to 3mg patch, 10mg Methadone, 600 mg Gabapentin and daily magnesium citrate. The results were nothing short of miraculous. In my 35 years of having this horrible affliction I’ve never this much relief from RLS. Things are still not perfect I can finally lead a near normal life and get a decent nights sleep most nights. Thank god I found this doctor or I would not be here today.

Important things that are now part of my regimen and contribute to the effectiveness of the drug protocol.
1. I exercise on a daily basis. I lost 10% of my body weight through diet and exercise bringing my weight down into the normal range for my height and physical build. This helped.
2. I have dinner early and do not over eat. Not having a full stomach at bedtime makes a difference.
3. I take powdered fiber with lots of water at breakfast and dinner to control the constipation from the Methadone.

I hope this post and my contribution here can help someone else to get relief from this horrible affliction.