Starting Methadone, any advice?

[Fishhag]

I am just starting my journey into discontinuing the pramipexole. I have been on it for 12 years and I was experiencing terrible augmentation. I started at 1.5 mg ER and I am down to .25 non ER pramipexole. It hasn’t been easy. I had an appointment with my neurologist yesterday and we decided my next best step is methadone. I have a hard time tolerating the gabinoids as they leave me with an incredible hangover the next day and tramadol was just not cutting it. Any advice as to what I might expect would be greatly appreciated. I love this community!

[SueJohnson]

You have reduced much too quickly. Only 2 weeks ago you were on 1.5 mg, You should now be on 1.375 mg. So my advice is to slow down and even go back up.

That's great that your doctor is prescribing methadone. That should help you get off pramipexole and should cover your RLS once your withdrawal symptoms have settled.

The starting dose is dose according to the Mayo Algorithm is 2.5 to 5 mg and the average effective dose is .5 mg to 6 mg.

[violetta254 in reply to SueJohnson]

What I see on the Mayo site is an average dose of 10mg. of methadone (not .5 to 6 mg.) I am on 10mg., which works quite well but .5mg would do nothing. Con you tell me where you got that figure. I couldn't find it.

[SueJohnson in reply to violetta254]

My mistake. It is not .5 but 5. I had it correctly in my notes but wrote it incorrectly here.

[SueJohnson]

Did you see Dr Bazan? If not who did you see as I keep a list of doctors and very few will supply opioids.

[Fishhag in reply to SueJohnson]

My neurologist is Dr. Joshua Ramsayer at the Oregon clinic in Portland, OR. He is board certified in sleep medicine. I have been under his care for several years and seems to be up on current literature , but he is the one who prescribed the 1.5 mg of Pramipexole though. He is not adverse to opioids, but is tentative. I had to sort of talk him into it. We’ll see how this goes.

[SueJohnson in reply to Fishhag]

Thank you.

[SueJohnson]

You should slowly taper off the tramadol before starting the methadone.

[Fishhag in reply to SueJohnson]

How slow is slow?

[SueJohnson in reply to Fishhag]

Not sure.

[Joolsg]

Methadone is a long half life opioid so should resolve your RLS and help settle the Pramipexole withdrawals.I am on Buprenorphine, as it's extremely difficult to get Methadone here in the UK. It is miraculous.

Common side effects of methadone include sweats, constipation, alerting/Insomnia. So be prepared. All can be resolved.

If you cannot tolerate the withdrawals- slow down the Pramipexole withdrawal.

[YoghurtLover2]

That is very fast for coming off Pramipexole. I’m following Sue’s advice. I was on 3/4 of .25 mg and tapering down with about 1/8 of a tablet per week and still experience disrupted sleep. I cannot imagine coming off as fast as you did … must have been really hard .

[BabyBlue999]

Hi there, I’m 83 yrs.

Every other meds failed to help me. I was referred to Jose Thomas Gwent S Wales.. I’ve been on Methadone for a year or so . Started on 2.5 mg and eventually 10mg x twice daily to get relief. No effects at all from this medication, I’m able to sleep for about 5 hrs from the 1 -2 hrs before. I still have the twitching 24 hrs but I can cope by relaxing my body when I sit.

The Methadone has given my life back from the suicidal mess I was in for 9 yrs. I sincerely hope you will find relief from this horrendous affliction from RLS. I pray you will find a solution Fishhag. Methadone may help you too. Love and blessings XX

[Fishhag in reply to BabyBlue999]

after only one day on methadone, it’s like some one pulled the wiggle plug and my whole body is relaxed and I can finally sit still.

[SueJohnson in reply to Fishhag]

That's great! So pleased for you.

[Parminter]

I took this into my own hands.

My doctor had given me methadone, (after much argument) in LIQUID form, for breakthroughs while on a dopamine agonist. I was very augmented.

The day came when, on a busy afternoon, moving about, I was struck by full-body RLS . It was unpeakable. I decided then and there that I would never touch dopamine agonists again, and I immediately took 15 mg methadone in liquid form and I stayed awake for as long as possible. At about midnight I took another 5mg, bringing me to the maximum daily dose.

I fell asleep and had the best sleep in decades. I woke with the quietest limbs I had experienced in many years, utterly relaxed. It was extraordinary. No twisted sheets, no staggering about bumping into furniture, no bruises, no tears.

The next evening, I reduced the dose, and each evening thereafterI titrated down until I reached 6mg, which was insufficient. I settled on 8mg, which was the sweet spot for me.

Then I told my doctor. Two weeks later.

The liquid form is very cheap and allows one to titrate very exactly. You'll get funny looks, because I believe this is the form that addicts use. Who cares?

I have now moved on to buprenorphine but am considering a return to methadone because of cost. But I would also take a small dose during the day as well as two hours before bed. I would divide the 8mg into 2 plus 6, or 3 plus 5mg. As I say, with the liquid form this is easy to achieve. You must find out what is right for you, not what is right for the your doctor.

So, I did everything that one ought not to do - I went cold turkey and told my doctor nothing until I was on the lowest possible dose for me. Once I reached the right dose, I had no inclination whatsoever to increase.

I have not touched a dopamine agonist since that horrific day. We know they should not be on the market, they should be Black Boxed.

And Dopamine Agonist Withdrawal Syndrome is a very real thing, and sometimes it lasts for a lifetime.

Had I not disobeyed the rules, had I continued on the path set for me - for many of us - by ignorant Western medicine and Pharma - I have no doubt I would be dead by suicide.

This story will shock many. But I read all the scholarly papers many, many years ago, and I know that there is no way I could possibly have reduced the pramipexole dose in the prescribed manner. It is asking for superhuman strength that very few of us possess, certainly not me. I tried twice and spent the entire night in tears. That way leads to despair. It is small wonder we have an extremely high rate of suicide.

Wicked disobedience notwithstanding, I had no withdrawal symptoms whatever.

Experts are sometimes wrong.

[Fishhag in reply to Parminter]

After just one night on methadone , it is like a miracle. My whole body is relaxed and I can sit still with out the constant whole body wiggles, as I call it. I was also thinking about taking no more Pramipexole as the methadone was transforming. The night before starting the methadone was the worst night ever, crying, sleepless, imagining nothing could be worse. Today I am totally different. It just pisses me off that it has taken my dr so long to to finally prescribe this medicine. He could have saved me 6 years of hell!

[TheDoDahMan]

I'm a 79-year-old male in the US. About 7 years ago my lack of sleep became so severe that I was having suicidal ideation. I finally read about Dr. Buchfuhrer's success using low-dose methadone. After no results on gabapentin, he prescribed me 10mg methadone per day. It was miraculous and immediate. I've slept 8 solid hours every day since.

[Fishhag in reply to TheDoDahMan]

Well, I have one night under my belt and it was like magic. 8 hr of wiggle free sleep.

[Merny5]

You ask, what can you expect? The answer is relief!

[SleeplessinNC]

I also augmented on pramipexole with terrible DAWS. I didn’t really have guidance like you will find here so it was hell coming off cold turkey. Congratulations to you on making the journey to get off of that poison — and the last step can be extra tough. I resisted methadone — mostly because of the stigma — and wish I would have tried it first, not last. Methadone has filled in the blanks for me, so to speak. I have a combination of things that work well for me. We are all different. Methadone was the last piece of the puzzle for me, for now, and it has worked well for many months once I settled on the correct dose for me, 15 mg at 9 pm. Keep the forum posted. We care!!

[Fishhag]

After one night on methadone, I am a new person. I hope it continues. 8 hrs of sleep is like a unicorn but I think I have found my unicorn. I took a total of 7.5 mg the first 24 hrs in two separate doses. It feels like I can move that down a bit to 5 mg total. (I am sensitive to almost all drugs) After reading about Parminter’s experience, I am going to try not taking Pramipexole tonight and just go with the methadone. I was always terrified of not having Pramipexole on board, but I think it was just dragging out the worst symptoms. I’ll keep reporting…..

[TheDoDahMan]

If only more doctors would read about these success stories.