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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.
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Thanks for taking the time to compose your detailed and comprehensive report. I wish you continued success!
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1 ReactionWow! What a journey! Not a good one but it sounds like you now have the relief you need and you can keep away from Oregon! I sincerely wish your life each day continues to improve and you are able to enjoy each and every day!
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1 Reaction@zombiewoof, what an amazing story of trials and tribulations, you really deserve all the best after your journey, it’s very inspirational to read how you persevered and ultimately found your way back, thank you for sharing this amazing story.
I appreciate your forthcoming with the trials of different reliefs to combat RLS. Many of us have tried different prescriptions, strengths, diets, angles in dealing with this dreaded disease, that many people have no clue how we are suffering. I was ashamed to admit I had it years ago, but have come out into the open to tell family and friends how it controlled my life. I see a sleep specialist doctor from Mayo in Phoenix, and she has been a god-send to me, prescribing buprenorphine tablet at such a small increment, about 1/3 of a 2 mg tablet nightly. My weight is slight and I control it with diet and exercise, competing in tennis and pickleball at nearly age 70. I do find having dessert at night triggers the leg spasms, and eat only a few bites when entertaining or dining at a friend's house.
Good luck to you, and we all wish you well.
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1 ReactionThat's great. I'm going to have to find me the right doctor. I see a neurologist, and take 2mg requip 6 times a day and I still have the restless leg. I walk and walk. I've cried. It's horrible. I can't take gabapentin, it makes me really spacy. I rub biofreeze, lidocaine lotion on my legs and feet, I get some relief
I'm so glad you found help. That's a miracle.
Dear Lilly71,
I have tried everything out there on the market, and saw a neurologist at the Barrow Institute in Phoenix three years ago. The Barrow is a large and respectable neurological think-tank to help people with RLS in the Parkinsons Center. He placed me on premipexole, which today, is the wrong thing to administer, due to the symptoms become worse, as augmentation occurs. Then he suggested a "drug holiday" the worst thing in the world: you slowly diminish the pramipexole with no other drug aid to get over the hump; then nothing! I was up a night for hours. I ended my relationship with him, and saw another neurologist with Banner Movement Disorder, recommended by the neurosurgeon who placed a spinal cord stimulator in my spine for what I believed could help the pain and RLS. Unfortunately, it didn't help, and I am having it removed next month, after two years. This doctor placed me on methadone, and the panic attacks were scary. Possibly in time, the SCS or a type of device implanted with help with RLS. It is when I received a referral to the sleep specialist at Mayo, who after interviewing me and truly listened I had PLMD, another form of RLS, and treated me with a small speck of buprenorphine. The dose is quite small, .66 mg of a 2 mg tablet. I am so against drugs, and was so worried about augmentation, but after almost one year, it has enabled me to sleep, and travel in a car or an airplane without the leg jerks. Please do not give up, see about the buprenorphine.
Since posting my original entry some things have changed. I was forced to take a “holiday” from my Methadone. What I found when I stopped Methadone was:
1. Gabapentine does nothing to relieve my RLS. I’m going to discontinue taking it.
2. The Neupro (Rotigitine) did not completely quell my RLS. I increased the dosage to 4 mg/24 hr patch but still had significant symptoms.
3. I had significant body pain from my lower back down into my legs amplifying my RLS. I am sure this is why the Neupro did not stop the RLS on its own.
I was off the methadone for four nights. On night three and four I got three hours then 35 minutes of sleep respectively. I was dead tired and in agony on night five so I relented and took 10 mg of Methadone. Within a half of an hour my RLS stopped, I was free of pain, and I fell asleep.
Methadone has undesirable side effects for me. Lesson learned I will now take it on an “as needed” basis only since it acts so quickly once ingested.