Severe RLS solved for me

My story is no doubt a variation of the story of everyone suffering from really bad RLS. I identified with zombiewolf's joking/serious mention of traveling to Oregon (where assisted suicide is available) to combat RLS...

I was never suicidal, but one night, just before crawling into bed, the realization hit me that being dead would have been an improvement over the life I was living. That was a scary moment. I cried uncontrollably that night and almost nonstop all the next day. I was so sleep-deprived, miserable and broken. I had insomnia and was anxious about bedtime and had enormous difficulty falling asleep.

Then, I decided I had to find a way out of all the misery---which ultimately I did.

I had thought (for 13 years) that I had a weird muscular problem that strangely only occurred at night. I tried all sorts of non-prescription remedies, physical therapy, and the only thing semi-effective was a heavy duty massager, which I still continue to use (when symptoms strike---the massager is always next to my bed).

I had never considered RLS as causative because my symptoms felt like pain, instead of jerkiness--which is the common description one reads. I've since learned that RLS symptoms can vary quite a bit from person to person.

When I was finally diagnosed, it all made sense. My symptoms only occur when I'm asleep, or drowsy, or sleepy. They stop within a couple minutes, when I get up and walk.

Finding someone to treat me effectively took me another three years.

Fortunately, as soon as I was diagnosed I started to google and found Dr Early's webpage (he's at Johns Hopkins) and read about augmentation. So, when my primary doctor tried to prescribe a dopamine agonist, I refused and we settled on giving gabapentin a try. ...It didn't help, at all. Nor did taking iron supplements pills.

Long story short, pregabalin didn't help either. Nor did an IV iron infusion.

But, finally, buprenorphine has. I take it in the form of Suboxone. Like methadone, Suboxone is primarily used to treat addiction, but it has less side effects than methadone. And, Suboxone is less expensive than a prescription for buprenorphine alone (as my wise sleep neurologist, an expert in treating RLS knows).

(Like slkanowitz I also learned through this doctor which medications made RLS symptoms worse. You need someone well-versed in RLS treatment to have this kind of expert level information, which is critical).

Words can't describe what it means to have my life back. Miraculous comes to mind. I'm not cured. I still have episodes of symptoms, but they are less severe, less frequent, and now tolerable.

My advice to anyone with severe RLS is to first educate yourself about it. Standard treatment, for a long, long time, has been the dopamine agonist drugs which cause augmentation. Most doctors (like my primary) still believe this is appropriate to prescribe, although it is not.

The newest Guidelines for treatment of RLS are on the internet (authored by Winkleman--who practices in at Mass General in Boston-- and Berkowski--who treats via telemedicine in Michigan, Ohio and Florida). Reading these guidelines is a good place to start.

There is a Foundation for RLS and their website has bios of a number of RLS specialists, who serve on their board. My doctor is on the board and has been incredibly helpful, always understanding and supportive. Because RLS can be so awful, it's something that needs to be well-treated and because augmentation means symptoms get much worse, you don't want to be treated incorrectly. This is a situation where going to an expert--instead of settling for the most convenient physician---will pay off.

There is a company in California called Noctrix which has invented a device that is a pair of bands, worn on each leg just below the knee and delivers a "signal" that the brain (where RLS starts) interprets as leg movements--so that RLS symptoms are turned off before they start. This is a research backed therapy that the FDA has approved and my insurance will cover. Soon I will add this device as an additional treatment tool so my RLS will be as well-managed as possible. I mention this because it could be helpful to those who have augmented form of RSL and need all the help they can get. Google their website. It's a small start up company, headed by graduates of Stanford, Berkeley and Princeton (which impresses me). Right now, the device isn't available in every state, because they are still building a nation-wide support team. You have to ask if it is available where you live.

I hope anyone reading this posting, who suffers from RLS, can get effective treatment much sooner than I was able to. I hope your suffering will end soon.

After many years of RLS, the only medication that gives me
some relief is pramipexole 0.50 mg (prescription).

My story is no doubt a variation of the story of everyone suffering from really bad RLS. I identified with zombiewolf's joking/serious mention of traveling to Oregon (where assisted suicide is available) to combat RLS...

I was never suicidal, but one night, just before crawling into bed, the realization hit me that being dead would have been an improvement over the life I was living. That was a scary moment. I cried uncontrollably that night and almost nonstop all the next day. I was so sleep-deprived, miserable and broken. I had insomnia and was anxious about bedtime and had enormous difficulty falling asleep.

Then, I decided I had to find a way out of all the misery---which ultimately I did.

I had thought (for 13 years) that I had a weird muscular problem that strangely only occurred at night. I tried all sorts of non-prescription remedies, physical therapy, and the only thing semi-effective was a heavy duty massager, which I still continue to use (when symptoms strike---the massager is always next to my bed).

I had never considered RLS as causative because my symptoms felt like pain, instead of jerkiness--which is the common description one reads. I've since learned that RLS symptoms can vary quite a bit from person to person.

When I was finally diagnosed, it all made sense. My symptoms only occur when I'm asleep, or drowsy, or sleepy. They stop within a couple minutes, when I get up and walk.

Finding someone to treat me effectively took me another three years.

Fortunately, as soon as I was diagnosed I started to google and found Dr Early's webpage (he's at Johns Hopkins) and read about augmentation. So, when my primary doctor tried to prescribe a dopamine agonist, I refused and we settled on giving gabapentin a try. ...It didn't help, at all. Nor did taking iron supplements pills.

Long story short, pregabalin didn't help either. Nor did an IV iron infusion.

But, finally, buprenorphine has. I take it in the form of Suboxone. Like methadone, Suboxone is primarily used to treat addiction, but it has less side effects than methadone. And, Suboxone is less expensive than a prescription for buprenorphine alone (as my wise sleep neurologist, an expert in treating RLS knows).

(Like slkanowitz I also learned through this doctor which medications made RLS symptoms worse. You need someone well-versed in RLS treatment to have this kind of expert level information, which is critical).

Words can't describe what it means to have my life back. Miraculous comes to mind. I'm not cured. I still have episodes of symptoms, but they are less severe, less frequent, and now tolerable.

My advice to anyone with severe RLS is to first educate yourself about it. Standard treatment, for a long, long time, has been the dopamine agonist drugs which cause augmentation. Most doctors (like my primary) still believe this is appropriate to prescribe, although it is not.

The newest Guidelines for treatment of RLS are on the internet (authored by Winkleman--who practices in at Mass General in Boston-- and Berkowski--who treats via telemedicine in Michigan, Ohio and Florida). Reading these guidelines is a good place to start.

There is a Foundation for RLS and their website has bios of a number of RLS specialists, who serve on their board. My doctor is on the board and has been incredibly helpful, always understanding and supportive. Because RLS can be so awful, it's something that needs to be well-treated and because augmentation means symptoms get much worse, you don't want to be treated incorrectly. This is a situation where going to an expert--instead of settling for the most convenient physician---will pay off.

There is a company in California called Noctrix which has invented a device that is a pair of bands, worn on each leg just below the knee and delivers a "signal" that the brain (where RLS starts) interprets as leg movements--so that RLS symptoms are turned off before they start. This is a research backed therapy that the FDA has approved and my insurance will cover. Soon I will add this device as an additional treatment tool so my RLS will be as well-managed as possible. I mention this because it could be helpful to those who have augmented form of RSL and need all the help they can get. Google their website. It's a small start up company, headed by graduates of Stanford, Berkeley and Princeton (which impresses me). Right now, the device isn't available in every state, because they are still building a nation-wide support team. You have to ask if it is available where you live.

I hope anyone reading this posting, who suffers from RLS, can get effective treatment much sooner than I was able to. I hope your suffering will end soon.

Thank you for your reply and experience down this terrible road to find the treatment you needed to combat RLS.
I have written in this forum about RLS, along with the many medications, doctors, treatments, in the past few years. I too have suffered from RLS for over 35 years (one doctor mentioned it was brought on by pregnancy when I was 33) yet it wasn't the type of creepy anxious feeling to move your legs; mine was a un-volunteer response when laying still at night, or sitting for a time (car, theatre) and my leg would kick, and nothing appeared to calm (at times both legs) down. I tried all the many prescriptions, iron infusion, just as you have, and was treated with methadone from a neurologist at the Barrow Institute in Phoenix. I couldn't handle the panic attacks, along with a tragedy in our family, that had me crying in an uncontrollable state. I then finally received a referral at Mayo and saw a sleep specialist, who after listening to me for one hour, she proclaimed I had Periodic Limb Movement Disorder. I was beyond overjoyed to hear her diagnosis, as I knew I had it, yet all the doctors told me it was RLS. She began me on the buprenorphine, sublime, as you are prescribed. I began with 1 mg, and have tapered down to .66 mg nightly. What a difference, and I am not waking up and staying awake during the night for hours. I continue to schedule appointments with her every six months, to review how my condition is.
Augmentation is hell, and to take a "drug holiday" is sure hell, as the Barrow doctor had me do with a drug he prescribed, pramipexole. That drug is the worst and should be banned. No one should use that. The Drug Holiday took weeks to finally get my sleep back, of which then the methadone with another doctor, was prescribed. I ended my relationship with him, saw another doctor with another group, of which I was prescribed methadone once again. Hell all over again.
In short, the buprenorphine has allowed our condition to remain calm at night, and many of the viewers need to look into it. I appreciate your endorsement, and also reading your experiences.

Thank you for this post. I learn something new every day. I have never used Suboxone but will discuss this with my sleep doctor at my next appointment. I’ve tried everything over the years to get this horrible affliction under control. Nuepro 3 mg/24 hr patch (generic name is Rotigitine) and 10 mg Methadone daily is the only thing allowing me to have some semblance of a normal life. So far no augmentation with Neupro after four years. I hate the side effects of methadone and hope Suboxone can be a substitute. Even with my current medications sleep is difficult. I resort to using Zolpidem 10 mg several times a week in order to get a good nights sleep. The problem with taking Zolpidem is my RLS needs to be under control first. A bad RLS attack coupled with 10 mg Zolpidem makes for some bizarre behavior as I pace around the house all night.

The forum won't let me include a website URL (because it might be spam), so I am recopying the buprenorphine vs methadone comparison chart. The author is Dr Joseph Andrew Berkowski of ReLACS Health (co-author of the current RLS Guidelines) and he gave permission to share with you all. (AKA "Dr Andy")

The title of this website is: Treatment of Restless Legs Syndrome (RLS) with Methadone Versus Buprenorphine: Who Wins? You can probably google it and read the entire article, if you are interested. The article speaks to his reasoning assigning "stars" to the two drugs and why he thinks buprenorphine is a better drug to prescribe.

I think this is valuable information, but not everyone reacts exactly the same to any particular medication. This is why it is so important to have a doctor who can work with us and tinker, if need be. I never had any improvement from gabapentin or pregabalin, but that is where prescriptions seem to begin and maybe for others these drugs work well.

I can't say buprenorphine is the answer for everyone, but it sure has turned my life around.

You can see from the chart that buprenorphine comes out better than methadone in a number of critical categories. In terms of "risk of death" I believe this speaks to an overdose (such as a grandchild taking unsecured medications). It is, therefore, safer to have buprenorphine around the house than methadone. Although I am careful about where medications are kept, I also have grandchildren and knowing buprenorphine is less likely to cause a lethal overdose is something I appreciate. Also, methadone has more potential to reduce respiration, a potentially serious side effect for some people.

Both drugs can be effective for treating RLS. And, there are ways that methadone beats buprenorphine.

(more stars are better---fewer stars are worse)

For RLS

buprenorphine methadone

risk of death. ***** **
effect on breathing **** *
effectiveness for RLS ***** *****
ease of use ** *****
irregular heart rhythm **** **
cost ** *****
availability & accessibility *** ***
triggers opioid withdrawal ** *****
chemical dependency **** **
constipation *** *
lack of euphoria ***** ***
pronunciation * *****