New here... Intro and lots of questions about Methadone

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TuckerCAL
Posts: 1
Joined: Mon Oct 12, 2020 1:56 pm

New here... Intro and lots of questions about Methadone

Post by TuckerCAL »

Hi all, I don't want to write a book but that is what it would take to catch anybody up on my case. I will try to be brief-ish.
I am 60, have had RLS since I was a teen, but has gotten much worse since having babies.
I was put on ropinrole about 15 years ago and augmented within a few weeks. Doc weaned me with Norco and Gabapentin
I was coping on gabapentin until 4-5 years ago, then couldn't control the RLS
Went to a local (Northern CA) sleep specialist who put me on Mirapex. Also did plenty of iron, ferritin, etc. labs, plus a sleep study. Joined an RLS support group on Facebook so learned tons. Learned about Dr. Buchfuhrer, and am a big fan of his. Refused to increase Mirapex above 0.125 starting dose.
Gabapentin alone, with 1/2 of a 325mg Norco as a "rescue" when the RLS flared worked for about 3 years. Things got frustrating about 2 years ago, and the local doctor wasn't helping. I tried to get into Dr. Buchfuhrer on his one day a month at Stanford, but never got in. Finally switched doctors a 3rd time when the doc wouldn't stop harping on sleep apnea. Sleep study showed mild sleep apnea when I slept on my back, which I never do. My husband says I only snore on my back, and when he nudges me to role to my side, I don't snore, don't startle, no signs of sleep apnea he has noticed when I am on my side.
I have insomnia too. Will go to bed at 11-12, up a couple hours later, either from RLS or just insomnia, down for 2 hours, up again, etc. Lucky if I get 5 hours sleep.
Then I got cancer - diagnosed in January this year. Four months of chemo made me so sick, but all those drugs helped me sleep. I was down 60 lbs and eating very little. Then surgery, and Tramadol for a month meant no RLS. Finally finished the Tramadol and the RLS came back with a vengeance. I couldn't sleep more than a couple of hours without a Norco, RLS would happen in the afternoon some days, keep me awake at night, but then another day would be no RLS, but insomnia would keep me awake. I never got a good nights sleep. RLS wakes me up about 5am and I can't go back to bed.
THEN I had an epiphany... I had so many of my doctors appointments as video appointments due to covid and my compromised immune system... could I get a video visit with Dr. Buchfuhrer? Yep, easy, only waited 2 weeks. He spent an hour with me. He was awesome.
He said i was sort of augmenting on Mirapex, because it is so similar to Requip that I augmented on 15 years ago. I needed to get off Mirapex.
He wants me on Methadone. But, he can't prescribe for me because he has never seen me in person. So we have to convince my sleep doctor, and she isn't a fan of Methadone. Lots of back and forth, a few calls between her and Dr. B. They finally agree that I will use Methadone for a couple of weeks to get me off of Mirapex. I started the Methadone tonight. It makes me nervous. I need to understand it more. My doctor wants to only use Methadone for a couple of weeks. Dr. B wants me on it long term. I have no clue what I want. My doc wants to try to improve the RLS with more Gabapentin .. was on 800, she upped it to 1200 last month by adding a noon dose, she is now upping to 1400, increasing to 500 at noon and 6pm, 400 at 10pm. I keep falling asleep in my chair after dinner, which messes up my insomnia. She wants me to go to bed no earlier than 11pm.
So, please tell me the positive and negative to staying on Methadone vs. just using it while I withdraw from Mirapex. Any links to help me educate myself on methadone and RLS? Do I really want to be on it long term? What else could I do if not Methadone?
One option is to drive to LA and see Dr. B in person so he can prescribe meds for me so I don't have to have my current sleep doctor agree with his plan.

stjohnh
Posts: 1126
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: New here... Intro and lots of questions about Methadone

Post by stjohnh »

I think you should go to LA and see Dr. B. That would help solve several problems. One question, you were doing well on tramadol, why not stay on it? Sleep problems are nearly universal for people with severe RLS. THC (medical marijuana) helps lots of RLS people sleep when most other meds don't help. Gabapentin does help RLS sleep, but causes lots of daytime sleepiness for many people. You may do better with a slightly lower dose of gabapentin and adding THC (smoked, vaped, or edible).
Blessings,
Holland

RickyS29061
Posts: 1
Joined: Tue Apr 28, 2020 4:03 am

Re: New here... Intro and lots of questions about Methadone

Post by RickyS29061 »

I was on methadone 10mg for 2 months taking it twice a day. One in the morning when I woke up and one at bedtime. It seemed to work great for the bedtime dose it helped me fall asleep but that's the problem it would make me really sleepy even during the day and I didn't want to do anything just sleep all day. And then the constipation was horrible. So I told my doc to try something else plus the methadone was only working for 5 to 6 hours then I would have the symptoms of rls again. My doc now has me on oxycodone 10mg 3 times a day but even that is starting to not last long enough. I have rls literally all thru out the day. If I take an oxy it will knock the rls out for about 5 hours and then I have about 2 to 3 hours until the rls comes back and I've noticed its been seeming to come back with a vengeance everything the meds start to wear off. But yeah methadone works good for bedtime but you don't want to be on it long it has some really bad effect for long term such as depression. But everyone's body is different and everyone's rls is different. If you find it works for you great i wish you the best.

debbluebird
Posts: 2159
Joined: Mon May 21, 2012 3:27 pm

Re: New here... Intro and lots of questions about Methadone

Post by debbluebird »

I have been taking methadone since 2010. The first couple of months I experienced nausea, but it finally went away. Before the methadone I had augmented with the mirapex ( 9 years). After that I was taking 5 different meds. I was a zombie. I tried lyrica and was suicidal.
Methadone, I take 5 mg at noon and 5 mg at bedtime, about 10 pm to 11 pm. If I don't space it out then I have insomnia.
I was taking gabapentin, but I tend to gain weight with that. I stopped the gabapentin after weaning off.
I replaced it with a muscle relaxant. Tizanidine. I take one at bedtime and the other in the middle of the night, whenever I wake up.

Rustsmith
Moderator
Posts: 4902
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: New here... Intro and lots of questions about Methadone

Post by Rustsmith »

I take methadone about half of the time and tramadol ER the other half. My doctor and I would prefer for me to be on methadone, but after about nine months, it starts causing me to become fairly depressed. Tramadol also causes me some unwanted side effects, so I am currently switching between them about every six to nine months.
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.

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