Restless Legs Syndrome (RLS) Discussion Board

HI everyone

I've been dealing with RLS for about 13 years. Was on ropinerole with gabapentin for augmentation holidays for 5 years but that finally stopped working, even with the holidays. I recently started seeing a neurologist at the UW Sleep Clinic here in Seattle has me on 2.5 methadone and 900 gabapentin. It worked so well for the first month and now, in the past week, I've been experiencing pretty severe dizziness that lasts all day. I'm not drinking alcohol and have even tried giving up coffee (as of this morning so might be too soon to tell). I've never been a big coffee drinker - at the most I have 2 shots of espresso in the AM. My neurologist insists the dizziness is not the methadone because he says it's out of my system within 6-10 hours of taking it. I also feel very sleepy all day. I've done nothing more than sleep and watch tv or read all weekend.

Has anyone else experienced this and what did you try?

I hate to stop it as I'm sleeping well for the first time in years. But I also can't spend my days in bed. My neurologist mentioned it lowers your blood pressure and I do have low blood pressure normally. Not where I need meds for it but enough that whenever they take my pressure in a doctor's office, they ask me if it's normally that low. He recommended lots of water so I've increased my water intake and added electrolytes. I've considered dropping the dose to 1.25 or taking it every other night. Has anyone else tried this?

Thanks for any advice you can offer!

I also wanted to add since starting the methadone I also sweat a lot.

It sounds to me like your doctor needs to re-read the info on methadone. Methadone's time in the body varies between individuals, but it has been reported to last from 2 to 13 days. Your doctor's comment may have been based upon info that says that it's "theraputic" effect for treating pain is sometimes said to be from 6 -10 hrs.

When I looked at a list of common side effects for methadone, dizziness was at the top of the list (which may have been alphabetical). But methadone can also cause some serious heart conditions, specifically QT prolongation.

This could also be an interaction with any other meds that you are taking.

This isn't meant to say that there is a problem with your doctor, but something sounds odd. Perhaps it is time to have a talk with your GP about this rather than your neurologist. I have had experiences where doctors will only tend to think about things within their specialty and can miss issues that would be obvious if they would only take a step back and look at the overall condition of the patient.

I'm wondering if the methadone is causing blood pressure issues. I took methadone for 11 years. It did lower my heart rate. I didn't need Gabapentin when I took methadone. I agree with Steve, talk to your GP.

Thanks Steve and deb bluebird. I tried doubling my water intake yesterday and woke up feeling near normal. So yes, I'm wondering if this is a blood pressure issue and the extra water is helping. I purchased a blood pressure monitor on Amazon and will keep an eye on it since I do already have low blood pressure. But the water seems to have helped today.

And I agree, I should reach out to my GP. Thanks both for the response. I always find tremendous advice and support on this board!

Oh yes, water will help blood pressure.