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Restless Legs Syndrome

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Dizziness & Methadone

Barb574 profile image
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I’ve been on Methadone ever since I went thru augmentation from Mirapex. My problem I can’t take more than 6mg without causing extreme dizziness. Even on this amount I am dizzy all the time & only sleep an hour at a time at most, often only minutes. I have always had low blood pressure, & have been told there is NOTHING to be done about the dizziness. My Dr at John’s Hopkins has told me that all of his patients have been helped w Methadone & none have issues w dizziness. Does any else have this experience? I am thinking of trying Neuromodulation. Does anyone have results with this?

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Barb574
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LotteM profile image
LotteM

So sorry to read this. And why are doctors so dismissive of side effects?

Here in Europe, it is very hard to get methadone prescribed for RLS. Doctors are more likely to prescribe buprenorphine/ Temgesic. And older opiate that binds differently to the opioid receptors. A scientific review of several years ago maintained that its chance at side effects is far lower than other opiates, including methadone. Also, dr Winkelman in a very recent webinar advised to try different opioids if the one you got prescribed doesn't suit you well. Something to discuss with your dr at Johns Hopkins? Have a look at the results of the opioid registry to see what other opioids are generally prescribed. I think oxycodon (didn't suit me and many others) and hydrocodon are also relatively common.

SueJohnson profile image
SueJohnson

Have you tried gabapentin?

Shumbah profile image
Shumbah

I would ask them for buprenorphine it hangs onto less receptors in the brain and 24 hour half life so much better for your Mu receptors.Methadone 46 to 60 half-life so a lot of compounding

I have been told by several professors They use methadone over buprenorphine due to price point.

I have a email from the late professor Richard Allen from john hopkins saying that they use buprenorphine so don’t let them fob you off.

Ps stemitil might be good for dizziness it stops dissiness , seasickness and vertigo

GuillaumeL profile image
GuillaumeL

I've been on Methadone for 5 months and I somewhat share your experience. Just for context, I'm only in my early 30s. No health problems other than RLS. I also take Pregabalin (200 to 250 mg) and supplement Iron.

I gradually increased Methadone as per my doctor advised to find a suitable dose. My max dose was 12mg. I'm now down to 5mg. I had no additional benefits at 12mg compared to 5. Despite the odd RLS bouts, it controls my RLS better than anything else so far.

However, I had nausea every time I exercised, so my workouts were getting shorter and shorter. I wouldn't say I was dizzy. It felt more like I couldn't get all the oxygen I needed through normal breathing. I had to breath very hard for a short while for the nausea to subside. It even happened to me a few times when at rest. So I cut back on my dose.

Also, in my case, Methadone causes insomnia. I'll ask my doctor to try buprenorphine next month.

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