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← Return to Severe RLS solved for me
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I ended up at the point where I was going to kill myself if I could not start sleeping at night. My quality of life was so poor there was no other option. I tried everything and the only solution was a pharmaceutical solution. I had zero options left. Addiction, if an unfortunate outcome of this, got my RLS under control then so be it. Not cavalier about, I dislike being addicted but I was at the end of my rope.
My solution has settled on this regimen.
10 mg Methadone daily, sometimes only 5 if feeling good, occasionally skip a day when feeling exceptional.
3 mg/24 Neupro (rotigatine) patch daily. Absolutely no deviation from this.
2 heaping tablespoons of fiber, twice a day, to control constipation from Methadone, with lots of water intake throughout the day.
10 mg Zolpidem (Ambien) at bedtime, as needed, usually once every 3 to 4 days.
If I follow this religiously I have a decent quality of life. Deviate, even a little, from the Methadone or Neupro and severe RLS quickly kicks in. It is horrible.
Since my initial post I have stopped taking Gabapentin. It ended up doing nothing for my RLS. It did a good job of giving me night terrors and constantly interrupting my sleep.
Everyone’s journey is different. I hope you find a solution that works for you.
Replies to "I ended up at the point where I was going to kill myself if I could..."
I've had severe RLS for MANY years. The only thing that gives me
some relief is pramipexole 0.75 MG (prescription). Like you, I was
having death wishes because of my lack of sleep. Pramipexole is
no cure, but I do get a reasonable amount of sleep now.
I take one tablet every night.
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Oh, zombiewolf! I understand. Suicide is a real risk for sufferers of RLS. This whole fear of addiction and doctors' fear of prescribing opiates are so irrelevant. I applaud you for having a regime that works. It is what matters. No sleep and death IS the better alternative. Not everyone has such severe RLS, but I have. So, I know. My history with gabapentin is that it didn't work. But, I was taking it alone--only it at that time--so it was easier to see that it didn't work and stop taking it. This reminds me of my aunt with Alzheimer's (25 years ago) who was taking Aricept, which helped for a while, then didn't. It was over $100 a month, which seemed a waste of money. I was warned by nurses and pharmacist that something "bad" would happen if the drug was stopped. A terrible escalation of symptoms. I figured the pharmacist and nurses all got their information from the drug company, so I discontinued the Aricept and nothing happened (except the drug company lost money and my aunt's expenses declined). The medical-pharmaceutical experts don't always have research-based answers, so add the fear that discontinuing a drug might make matters worse. When you and I survive at the very edge of what is tolerable, we sure don't want to risk anything "worse." Consequently, you did a very brave thing stopping the gabapentin (that was also a smart thing). I respect your self-knowledge of what works for you as well as the expertise of your doctor's support. A decent quality of life vs a life of sheer hell? My doctor has mentioned (as a generality, not patient specifics) weaning from Neupro (an augmentation causing medication). It can be done, but I think it would be hellish, too. As long as your routine works for you, that is what matters. Keeping on an even keel is important, too.