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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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Hi friend zombiewoof:
My doctor-- only does telemedicine for patients in Michigan, Ohio and Florida (states where he is licensed). No office. Over the computer.
He also won't take insurance. Initially, that put me off (worried that meant he wanted to fleece me), but actually he doesn't over-charge and giving me back my life (for me) is worth paying out of pocket.
I think about $450 for the initial evaluation and $125 per month (not per contact, for the entire month). (You can quit the monthly anytime).
I travel to Ohio to telemedicine with him once a year (from a motel room) and have to pick up my prescription in Ohio every 90 days. (It's 3 hours round trip for me, but I also get to go to Ikea : )
He wasn't "into" perpetuating having me under his care (for the money). Once I was stable on medication, he would have been happy to turn me back over to my primary doctor to have her write the medication prescription instead--he suggested this.
I just feel safer with him as my RLS doctor--I never want to return to the RLS hell I was in.
In addition, I can email or message or telephone him in between, if I have a question.
Recently, he advised me to take my medication a little closer to bedtime. He is also a sleep expert. It was a good suggestion.
He co-wrote the RLS guidelines with Dr Winkleman (who is at Mass General in Boston--but it is impossible to get an appointment with--I tried once).
My doctor is J Andrew Berkowski, MD. He's a member of the RLS Foundation advisory board. I first saw him in 2021 when he was working at Cleveland Clinic. Smart as a whip and his whole practice is RLS. He is also compassionate--a truly kind man. He understands how difficult RLS is to live with. (I believe his undergraduate degree was a co-major of Religious Studies AND Biochemistry.)
Not helpful information for you if you don't live in (or can travel conveniently to) any of the three states where he is licensed.
Unless you could travel to one of those place for just the evaluation and have your own doctor write prescriptions for you (assuming to get you off Requip, it would be a process of different drugs --not just one prescription and out the door). The problem with not being physically in Michigan, Ohio or Florida is Dr Berkowski can only write prescriptions in those states.
If it isn't too much of an invasion for me to ask, where do you live? I can ask Dr Berkowski for a recommendation of an RLS doctor closer to you, if you can't see him. He isn't the only RLS expert in the country --and he is acquainted with the other "good" RLS doctors who know how to treat RLS effectively.
Also, zombiewoof, your descriptions of suffering take me right back to my own breaking point in the summer of 2021, while I was waiting to get in to see Dr Berkowski. I wasn't quite ready to car-pool with you to Oregon, but if I hadn't gotten his help, I might have been heading that way. When I realized death was better than the suffering I underwent, I cried most of the night and all the next day. Thinking of how I felt then terrifies me, now that I'm "better." I never want to go back to those feelings.
The other thing, zombiewoof, you need to get some Nidra bands. I just read and replied to someone writing about them on another thread of this Mayo board. Did you see it? I got mine in April. After a while of using them, I swear to you I started to have nights with NO symptoms at all. Plus, the bands help when I do have symptoms (unless my symptoms are very severe). My medicare and supplemental paid for them 100%. Google Noctrix Company (in California) and Nidra. Call or email them. That is what I did. Go to YouTube and search the term Nidra there and watch some of their videos. I swear it is not a gimmick. It is a well-designed medical device that you have to have a prescription to get. I googled the people who started the company---all major brains. The first few months of use, I had someone from the company email weekly to be sure I knew how to use it and any questions I had were answered. Nidra bands really, really will help. (They don't replace medication, however. But, as an addition to medication, they do quiet frequency of symptoms)
Noctrix has a list of RLS doctors (on their website) who can prescribe Nidra for you, if your doctor can't. (For insurance to pay, the prescription needs to include the "right" description of your medical need). The doctors on the Noctrix list know how to write the prescription.
But, to get your medication issue "fixed" I don't know that those doctors are "expert" enough. I believe you need someone who has the far end of expertise treating RLS--someone as good as my Dr Berkowski.
As far as getting off Requip, of course that is a good idea. Best, I think, if you can do this with expert medical direction. I know Dr Berkowski has worked with patients who augmented and needed to be switched to different medication. He described this to me as a "process"---not like you can switch medications and go blithely off into the sunset immediately. There may need to be some tinkering as well as time for your brain to readjust.
It is the right way forward.
Also, experts like Dr Berkowski know what other medications make RLS worse---something a non-expert doesn't have a clue about.
I take a low dose of buprenorphine (a couple hours before bedtime) and it is the only thing that had helped me, medication-wise. It's like methadone--usually prescribed for someone with an abuse problem. It's a mild opiate. Causes some constipation. Changed my life (for the better). Gave me back a life.
You are doing the right thing advocating for yourself. It's what I did.
But, dealing with medical-stuff takes time. Getting an appointment with the right doctor can take time. It takes time to get a Nidra delivered and activated.
So, you need to get busy and not delay. You can dig yourself out of that hell.
Please let me know your location and I will help identify RLS specialist(s) for you.