Switching off methadone saga

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Ridgerunner
Posts: 44
Joined: Wed Nov 10, 2004 4:27 am
Location: WI

Switching off methadone saga

Postby Ridgerunner » Sat Apr 29, 2017 3:42 pm

I have not been on the board for 10 years although I should have stayed active.
I am 43, my dad is 69.
My RLS has been controlled for the last 10 years as follows:
- Failed both requip and mirapex back in 2005/2006ish, nausea and augmentation.
- Neurologist put me on methadone 10mg per day in divided dose afternoon-bedtime worked great for 2 years. Then, that MD got worried about an accidental OD with methadone where a babysitter found a tablet took it and died in some other state. So, he switched me to Levorphanol which was always hard to find, worked well just not as good as methadone and I continued that at 6-8mg per day for 2 years, never had dose escalation or tolerance with either.

My father also has RLS as did his father. Once I started treatment my dad finally went in to a different MD. Likewise he failed DA's as well and started on methadone after reporting the success I had had meanwhile I am still with a different MD taking levorphanol.
So, I switched to the same MD as my father he is an MD in sleep med that also has rls, apparently the docs is controlled with gabapentin.
Fast forward a bit and me and dad going to the same MD (the one with RLS himself) and both taking methadone dad at 12.5mg per day and me at 15mg per day and both very stable for 6-7 years.
Recently I had an EKG show that my corrected QT interval was 522ms so it has become hazardous for me to stay on methadone, qt reduced to borderline at 10mg but I pushed to get off of it alltogether, there was hope I could just take gabapentin.
Went from 10mg per day to 7.5mg per day as 2.5mg in afternoon and 5mg at bedtime, doc added on gabapentin as I had not tried that medication and as I took 7.5mg of methadone my legs and sleep went wild and so up we went on gabapentin from 300 to 600 to 900 to 1200mg at bedtime. Each dose increase afforded me 2-3 days of modest benefit with the gabapentin and then I would be right back to horrible RLS symptoms, 1200mg afforded no better symptomatic relief than 100mg in the end and I developed the sensation of body vibration and visible tremor somewhere north of 600mg gabapentin which was not pleasant. So, I am advised to go back to 10mg methadone which resulted in complete relief of RLS and so I tapered off of gabapentin as it was not helping.

Meet with MD again and he says well maybe stay on methadone through the summer and I politely refuse citing the hazards of walking around with a prolonged QT and knowing that I am taking a medication causing this is stressing me out.
So, he agrees to the following:
- Stop methadone immediately.
- Wait 2 days and start 15mg MsContin at bedtime.
- Restart gabapentin starting at 100mg at bedtime (Makes me wonder if he even remembered the previous failed trial of this just the previous month).
So, now I am on day 5 with no methadone and basically he has me going through with withdrawl as he gave me 15mg of morphine to replace 40mg equivalent of methadone.
No wonder for the last 4 nights I am averaging 4 hours each of very fragmented sleep, hot showers help (taking 3-4 per night), rubbing arms and legs with Deep Blue (DoTerra EO pain rub-think ben gay like).
All night long, evening and to less extent during the day I have moderate to severe RLS creepy crawly like I could crawl out of my skin symptoms to both arms and legs.
These were my typical symptoms before I started treatment 10+ years ago.
I message in to my care team and they report back that the MD says increase gabapentin so now I am at 400mg at bedtime. I am keeping an electronic journal of sorts and copy and pasting to them the events of my days and nights through this adventure.
It does not touch my symptoms, I do not know where the MD is going with this.
Furthermore, it seems like he does not listen and wondering about the compassion as he has RLS and is putting me through methadone withdrawl for no good reason other than my QT prolonged through no fault of my own, I expected better.
I meet again with him in late may but I am unsure what will happen with me between now and then, I am so defeated from 5 days of limited sleep and fragmented at that.
Turns out I can validate that sleep deprivation is a very effective torture tool.
My wife knows what is going on but I have my 12yo daughter asking why dad is sick and it is so heartbreaking.
I am not sure if I can trust this MD anymore, I am thinking of seeking a consultation with one of the RLS centers of excellence and am wondering what others think.
I demonstrated over 10 years of responsible opioid use with no addiction, tolerance, misuse, early refills, lost meds etc. and always remarked to the MD how amazed I am that the dose of methadone I was taking up until recently worked just as well as it did 10 years ago.
At our semi-annual visits I would also mention to him how I hate to have to take methadone and he would always talk me off the ledge by saying that its better than a heart attack or stroke years down the road from uncontrolled RLS. It truly was the least of the evils but became toxic for my heart.
Thanks for reading.

Rustsmith
Moderator
Posts: 2323
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Switching off methadone saga

Postby Rustsmith » Sat Apr 29, 2017 4:54 pm

Ridgerunner, my heart goes out to you (no pun intended :)) My current treatment is similar to yours and I occasionally worry about what it would be like if, or when, I have to go through what you are currently experiencing. Thankfully I currently have a doctor who is knowledgeable and listens to what I have to say and actually asks for my input on how we jointly manage my treatment.

As for contacting one of the Quality Care Centers, since you have lost confidence in your current doctor, it certainly would not hurt. However, be forewarned that demand to see the doctors at the centers is so great that it often the first available appointments are several months out. It might be mid-summer before you could get in to see one of those doctors.

I have to admit that I am not familiar with the effects of methadone on prolonged QT issues. My own cardiac issues are not related to my methadone usage (run has given me bradycardia and RBBB which I am told are not issues for me). Is it possible that switching to a different opioid med, possibly one that has a shorter half life, could manage your RLS and avoid the prolonged QT issues?
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Ridgerunner
Posts: 44
Joined: Wed Nov 10, 2004 4:27 am
Location: WI

Re: Switching off methadone saga

Postby Ridgerunner » Sat Apr 29, 2017 5:22 pm

Prolonged qt is a feature of methadone (and other meds such as citalopram is a common culprit) and can be dose dependant. Prolonged qt can lead to sudden death, its wise to stop the offending drug ASAP.

jul2873
Posts: 340
Joined: Thu Nov 15, 2012 7:32 pm

Re: Switching off methadone saga

Postby jul2873 » Sat Apr 29, 2017 7:57 pm

Can you take kratom? Have you tried it? Many of us have found relief with it. It is a herb with some opioid properties. If you search these boards you'll find plenty of info.

Rustsmith
Moderator
Posts: 2323
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Switching off methadone saga

Postby Rustsmith » Sat Apr 29, 2017 8:05 pm

You might want to look into Tramadol as an alternative. It is sort of a low level opioid, but also is quite different from methadone, fentanyl and the various morphine derivative medications. Many find that Tramadol is effective for controlling their RLS as long as their RLS isn't too severe. Tramadol is the only non-dopamine med that can cause augmentation, but that is an unusual "complication" of using it long term.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Ridgerunner
Posts: 44
Joined: Wed Nov 10, 2004 4:27 am
Location: WI

Re: Switching off methadone saga

Postby Ridgerunner » Sat Apr 29, 2017 8:14 pm

Thanks Steve, we considered that but tramadol also has the potential to prolong qt so in my case should be avoided.

badnights
Moderator
Posts: 4295
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Switching off methadone saga

Postby badnights » Sun Apr 30, 2017 9:21 am

Of course seek a consultation at one of the Quality Care Centers! It can't hurt, and it might do a world of good. I suspect your doctor has compassion but lacks knowledge, and perhaps is even inhibited by his own RLS - if he can control his with gabapentin, I can pretty much guarantee (maybe I shouldn't sound so positive - I would guess) that his RLS/WED is not very severe.

I seem to recall - but don't know where I heard it - that some opioids are worse than others for messing with qt. Maybe I am mixing it up with respiratory issues.

Kratom might be a valid recourse while you're waiting to get in to a QCC. It acts on the opioid receptors but is not an opioid; maybe it won't have the qt issue? I would research it as much as possible, first. But it's worth considering if you and your doc can't come up with anything.

Probably meantime you should communicate to your doc - remind him you;ve tried gabapentin without success, and ask for a different medication. Lyrica/pregabalin might work better for you. Even Horizant might - it's gabapentin encarbil, which our bodies turn into gapapentin once it's absorbed. Gabapentin is notorious for being erraticlly absorbed, which might be part of your problem with it.

or, could be your WED is too severe for an anti-convulsant alone. So another thing you could try is a very low dose of a DA along with the gabapentin, perhaps even with a lower dose of whatever opioid you and your doctor choose. Low dose of DA might not cause the same side effects that you had before. Also that was years ago, so you may not be susceptible to the same side effects anyway.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

stjohnh
Posts: 274
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Switching off methadone saga

Postby stjohnh » Sun Apr 30, 2017 10:02 pm

Ridgerunner, risk of long QTc is influenced by many factors. Since you don't have a good alternative to methadone, maybe you should ask for a referral to cardiology. Have the cardiologist review your medicines and other medical problems and give an opinion about how risky (or not ) YOUR long QTc is. If risk is low, just continue methadone. Lots of people have long QTc for a variety of reasons and do just fine.
Blessings,
Holland

leggo_my_legs
Posts: 117
Joined: Sun Oct 16, 2016 12:29 am

Re: Switching off methadone saga

Postby leggo_my_legs » Tue Jun 20, 2017 3:26 am

Saga indeed as only fellow sufferers can understand. I'm so sorry you're going through this. One of the most cruel aspects of this disease...stuff stops working or we can't take it. Hope you find something that works asap.


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