Hi all.....
So, I've been following the forum for years. I rarely post because I haven't had much to contribute. First off, let me express my most sincere thanks to all of the regular contributors that this forum has been blessed with. I could list them but you know who they are. I must mention Sue Johnson though because she is the BEST. And Manerva wherever you are.
My journey....I'm 69 and have had RLS pretty much my whole life, but it wasn't really an issue until I was around 30. So the last 40 years have been problematic. Back then, we didn't know much about it, at least I didn't. My Dr. at the time prescribed carbidopa-levodopa (a DA) which worked well for years. I can't remember exactly when but at some point I switched to Pramipexole. Of course, that worked marvelously for many years up until about 2020 when I finally augmented at 7.5 mg. I had been reading this forum religiously at that point so I knew what was happening and I wasn't willing to increase the dose. It was time to ditch the prami.
I have been supplementing 25 mg iron bisglycinate + vitamin C every other night on an empty stomach for years and my iron runs around 150.
Fortunately, my Doctor is relatively well informed and after some discussion he prescribed 1,200 mg gabapentin (600 + 600) plus 5 mg hydrocodone. This dosage almost covered my RLS but not 100% so I increased the gabapentin to 1,800 in divided doses (600+600+600). This seemed to be the correct dosage for me and it eliminated my symptoms but the side effects were quite unpleasant. i.e. leg edema, cognitive impairment, clumsiness, etc. So, we decided to try pregabalin (Lyrica) and found it to be effective at 300 mg. However, the side effects at that dosage were just as bad as the gabapentin.
I must say that between 2020 and now, I have researched and tried every non pharmaceutical remedy from a bar of soap to acupuncture. Nothing I tried was even remotely successful (except Kratom). Yes, all the diets too. I really thought I was going to be able to figure this out without drugs but I have come to the unfortunate conclusion, at least for now, that I am going to need to take some type of medication. Faced with this reality, I wanted to figure out which of the drugs had the most tolerable side effects.
Disclosure...red strain Kratom powder that you can buy online (I bought mine at goldenmunk.com) worked unbelievable well. Unfortunately, after I took it for a month, my liver enzymes went through the roof so I had to stop taking it. Stuff worked like magic though. Too bad.
After augmenting on DAs, and having tried the first line anticonvulsants gabapentin and pregabalin, the next (and last) meds to try for my refractory RLS are LDN,LDM, and Buprenorphine. My primary care Dr. would not write a script for any of these "off label" medications, but did refer me to a neurologist at the University of Michigan.
I saw Dr. Anita Valanju Shelgikar on October 12th 2024 at U of M. Dr. Shelgikar suggested I try Suboxone sublingual film 0.5 mg (500 mcg) buprenorphine + .125mg naloxone.
These films come in 2 mg doses so you have to cut them into quarters to get the .5mg.
Hallelujah brothers and sisters!! It has been absolutely amazing. From the very first night, zero RLS for the first time in years. After a couple of nights, I cut the films into 1/8 th which is .25 mg. Same results....no RLS! This .25 mg chip is about 5 mm square and about as thick as a playing card. It's so tiny, I have to use tweezers to pick them up and place them under my tongue where they dissolve in about 5-10 minutes. I might be able to use an even smaller dose, and I might try, but at this size it becomes quite challenging to manage the tiny chips of film. It blows my mind that this tiny little thing could have such a huge effect on a 150 lb man (5' 9").
That said.....there are side effects, as with any drug. My side effects are #1 insomnia. I have never been a good sleeper anyway and have had insomnia for 40 years, even with prami and Lyrica so I'm not surprised. I manage this with 10mg THC gummies which are available everywhere here in Michigan. #2 side effect is constipation, which I manage quite easily with a fiber supplement (Metamucil). It's not perfect, but compared to what I've been dealing with for all these years, I'm over the moon with my Buprenorphine!
I know many of you are struggling, and have been for decades (like me). Believe me, I know what it's like to jump 6" strait up in bed like a man possessed! I know what it's like not to be able to sit and watch TV like normal folks, or fly on a plane, take a long car ride, or make early morning plans because you might not get any sleep. Unfortunately, many doctors are not up to speed on RLS treatments, and in fact some don't even recognize it as a serious illness. This needs to change, and it will someday, but we need help now! I'm afraid in many cases it's on us, the patient to educate the doctors, and some are not exactly enamored with the idea of having patients educate them. We must be persistent in our plight, change doctors, travel, what ever it takes. This is a life altering condition.
Finally....if you're still here, I have found relief in the form of buprenorphine as have many others. I hope you can find something that works for you as well. It's absolutely amazing to be free of RLS!.
Thanks for listening....take care.
Frank
Last night was 8th consecutive night without ropinerole… (also asking a question in my post)
transatlantic flight
does anyone know if it’s safe to take 300-600 mg of Gabapentin while taking 600 mg of horizant and 2 mg of pramipexole?
Can Gabapentin Stop Working?
Pregabalin vs. gabapentin 
