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).