Switching off methadone saga
Posted: 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.
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.