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Posted 11/19/2013 11:29 PM (GMT 0)
Just got in from my PM and he was really happy I had done the methadone discontinue in two weeks and looked and felt as good as I did!! He said he expected me to look exhausted!

He offered to raise the Butrans from 5 to 10 as I had already decided to stay on it and I declined the offer. He wrote for 90 Norco prn but I didn't fill it. At this time I wish to try without using it and having it will only make me weak! Lol my pharmacy is 24 hrs I can get it if I need it.

I've really done ok with just the Butrans, my Indocin, and occasionally excederin. Of course I use Voltaren gel anyway and the hydropool.

After all my knee surgeries and injections for my back and therapy I was so saturated with the methadone and for so long they never backed off to see if anything we had done worked!

It may not last forever but for now I feel pretty good!

He did say by summer we may need to rethink the Butrans since it's so hot here and many of his Butrans patients had significant trouble with the patch staying put and some had increased nausea and he felt maybe they were getting an increased release of med due to temperature?

We will see.
Posted 11/19/2013 11:40 PM (GMT 0)
Vickie,

You sound incredible!  You definitely seem so up-beat, cheerful and full of hope.  Not to mention, how quickly you got off a medication that is dastardly difficult to discontinue. 

You truly are awesome!

That is impressive, holding off on the meds.  You have iron willpower.  I admire that.

M.

Posted 11/19/2013 11:53 PM (GMT 0)
Not really I'm chicken!! After the methadone ordeal still being fresh in my memory I'm inclined to not become dependent on something else if I can help it.

I dont ever want to have to feel that miserable again!! I cant stand that creepy, crawly, heebie jeebie feeling, so tired your eyes burn but can't lay still long enough to sleep! Pain is a blessing at some point in that process!! Lol
Posted 11/20/2013 12:05 AM (GMT 0)
Vickie,

What a great story, and how well you are doing off the strong stuff. Very happy for you

David
Posted 11/20/2013 12:17 AM (GMT 0)
Fantastic news!!!

I think it's always a great idea for us to periodically back down a bit (or a lot..lol) on our meds to see where our true pain levels. I think hyperalgesia happens more often than reported. This is where our bodies get "super sensitive" to any pains due to our brains getting too used to opiates.

As I've mentioned previously, I ended up going down in dosages when I had to make the switch from Oxycontin to generic MSContin when the generic ran out for the Oxy and I lost my insurance.

Instead of the Dr. using typical "charts" to convert me over, we started really low and then knew that we could always tirate up if needed. But here I am, 5 years or so later and haven't had to go up at all.

I also think the other option is to switch to a different type of med which we do every few years with my muscle relaxer. This way it hits a different receptor in the brain.

All of this also shows us that we can use so many other options for pain control in addition to opiates. That is another reason why I haven't had to change dosage in so long as I only use the least amount of opiates as possible each day and rely on the numerous other modalities.

So, KUDOS to you Vickie!!! You really do "sound" positive and it sounds like you have a great Dr. to work with you which is wonderful!
Posted 11/20/2013 4:14 AM (GMT 0)
Hi Vickie I really do admire you for leaving your meds where they are. That's great.

love and hugs
Loretta
Posted 11/20/2013 4:53 AM (GMT 0)
Vickie, you are amazing and you sound great! Is the Butrans helping any with the pain? I know it was helping with the withdrawal but you mentioned it wasn't the best pain medicine.

I'm so very proud of you! I hope the pain isn't too unmanageable.

Linds
Posted 11/20/2013 5:06 AM (GMT 0)
Yeehaw, I am so, so excited for you. You know back when you first started down this path you got pretty upset with yourself because you were not able to get off the Methadone completely. It is such a difficult medication to get off of and some don't. I knew if you gave yourself some breathing room and let your body adjust to the lower dose, then go back as you did you would get off of it completely.

Methadone does something to the body that I don't think these drs are aware of. They are so text book and the text book does not apply to Methadone. I think you will agree with that, knowing what you have gone through all these months. But, you did it and I knew you would.

Susie
Posted 11/20/2013 7:04 AM (GMT 0)
I sure did! I feel like a new person (still in a old broken down body)!

Linds I think maybe a lot of the pain I had earlier after stopping the methadone and using the Butrans was maybe some rebound pain but for the biggest part was was caused by the methadone pulling out. Recall that it's stored in primarily fat and bone marrow?

After the first 10 days or so into the w/d it was slacking off greatly!!

Susie and SB your right and I believe I made it only by backing down, stopping to adjust and then moving on. I can't see anyway to have just stopped and flat out went from 40-60mg to nothing. The risk would have been great physically and I'm sure too much mentally to handle.

The Butrans isn't something your going to "feel " as it takes hold. Being in a transdermal patch for one and the category off opiate agonist it is.

It was a good move and I never have been into grabbing meds 1st rather I leave them as a last ditch effort when every thing else fails to bring about relief.

Thank you guys for your pushing and pulling and your faith when I waivered.
Posted 11/20/2013 2:13 PM (GMT 0)
Happy to read this news Vickie.

Hope you continue to feel better.

UA
Posted 11/20/2013 2:49 PM (GMT 0)
Vickie

I'm amazed you managed to come off the methadone so quickly. I read that methadone is one of the hardest to come off. Well done you! It's great that you are sounding so good too.

I've just recently gone back to fentanyl from OxyContin, I too decided to go down on the chart rather than up. I had reduced the OxyContin quite a bit too. My problem was my memory, I just couldn't remember a thing!! That and overwhelming tiredness. Both have improved but not by as much as I would have liked.

Take care and well done to you!

Jane
Posted 11/20/2013 3:10 PM (GMT 0)
I can't get over how up-beat you sound.  Err,...you know what I mean!  :)

As I've been educated on this medication, learning how harsh it is to the body, I'm even more amazed you did it, and so swiftly.  It's remarkable.

Your happiness comes across beautifully!

M.

Posted 11/22/2013 9:54 AM (GMT 0)
Hi Vicki, Hope you are doing well with the Butrans patch. I am really amazed that you are doing so well with the patch after so many yr's of using methadone as your primary pain med. I tried many different meds at the beginning of 2013 and fell flat on my face. And had to go back to the methadone. I really think I wasn't mentally ready to come off of methadone at that time and being forced to try other meds didn't help.
I was just wondering how you were doing now, I really hope all is well. Best of luck and feel good..
Randy B
Posted 11/22/2013 4:03 PM (GMT 0)
Again thanks to each and every one of you as I took strength from each of you in some small word of encouragement you offered! I didn't do this alone by any means!

RJ, still doing fine and each day actually is a little better then the last. I've tried numerous times throughout this 13 yr stretch to get off or switch to something different and like you fell flat on my face! This is undoubtedly the harshest med when it comes to withdrawal. I will be brutally honest RJ and say there were times trying to switch or stop that my state of mind was chilling? I'm certainly as we CPers are strong and I was so sick I would think of anyway I could just stop that sickness?? I mean any way? Feel me? Scary, scary! Now I've had stretches of horrific pain that I've referred to as my Kevorkian moments, but thinking t"hings because I was literally "dope sick " as any H addict? It was a very humbling and embaressing time.

So as the years passed on and I remained on methadone I became a "slave " to it simply because the leaving it behind was a ordeal I wasn't sure I could recover from. Then back in the summer I had a week where I was being monitored for a arrhythmia and the hospital was having none of it? I was maintained on morphine and Norco for a week of testing. It became really clear really fast that the methadone was wrecking havoc with my body as well as my mind. During that week I read 2 books, my sight was clearer, I listened to music with headphones and my hearing was clearer, I spent hours playing trivial pursuit with my teen, couldn't remember any of those kinds of thing's for years!! I looked around and life had somehow left me sitting in a recliner, virtually a recluse and hardly ever leaving my house with a bad memory, poor eyesight, ringing in my ears, and a general lack of motivation to just live life?? I knew right then that I was going to take back my life or die trying!!

Sure I didn't have many pain issues anymore because I was numb to everything!! I started a slow taper and I mean slow, dropped from 40mgs to 15mgs and took a break! I was discouraged as I wanted off now!! Lol patience is truly not my best virtue but Susie (straydog) pushed and insisted I needed to give it a rest and come back to the taper in a few months.

I went in and talked to my PM and he thought I'd have a better chance with Butrans or Subutex. I liked the idea of the Butrans being a 7 day transdermal patch and that's the way we went. He's intentions were only to use the Butrans until the majority of methadone was out of my body and then start trying to find an alternative base med. I wanted to try the Zohydro but was realistic enough to know hydrocodone in any dose wasn't going to cover the methadone!

As I started out I was really sick for the first few days I guess until the Butrans took hold? I also was using clonidine patch and 5mg Valium at night to help sleep. Remembering SB's " stay hydrated ", warm baths, and eat healthy! I utilized them all! It worked with work but 3+ weeks out I choose to stay with the butrans for now and I "look " and feel better then I have in many years!! Not having a hard time with pain and praying that remains the case but if it doesn't? I've got many more options without the methadone onboard to limit me.

Im sorry this is long but I wanted you to understand that it definitely took me being fed up with the way it was robbing me of not just pain but my living too! It had a time and season, it saved me a a crucial time in my CP journey but I should never have been left with 13 yrs of accepting it as my only choice simply because doing anything different was going to be a ordeal?

Hopefully you can get help finding a way down and onto something that will better serve you!
Posted 11/23/2013 10:50 AM (GMT 0)
Vickie,

I've been following your thread(s) about your medication changes - and I just want to tell you that I'm proud of you!! I know firsthand how difficult it is to make big time changes with meds - but I admire your willpower and positive attitude.

Hang in there - and keep fighting.
Much love, Tina
Posted 11/23/2013 11:14 AM (GMT 0)
Vickie,just wanted to tell you that I've been keeping up with you and am so glad you're doing so well.

Keep on keeping on,
Rick
Posted 11/23/2013 12:45 PM (GMT 0)
Thank you Tina and Rick, I truly appreciate the support I've gotten thru all of this and am absolutely positive this would have not been the success it is without you all.

Im surprised myself at times that it's been so much easier then it should have been. That fact alone reinforces my belief that it definitely was time to do this!

Had I not I would have kept wondering if any of the surgeries had been a success?

I'm still having headaches and these are likely rebound or may be from the Butrans, hopefully they will lessen over time.
Posted 11/23/2013 3:04 PM (GMT 0)
Vickie, I'm thankful you posted this.  While I wasn't on methadone, I was on another medication (that I'm no longer on) and I discovered the same type of reactions (not as severe, of course!)....and I thought I was going a little nuts because I couldn't rationalize the changes in vision, hearing, taste, cravings,....

I know every med works differently on people, but when I got to read of your experiences, I felt much of my sanity drip back.

I'm so proud of you, and I'm also very encouraged, reading of your journey.

Why, you maverick you!  :)

M.

Posted 11/23/2013 8:40 PM (GMT 0)
Vickie:

Just wanted to say that I think it's fantastic that you've done so well coming off the Methadone. You did a great job and handled it with such grace. You've encouraged many, by showing us that we can come off the long used medications w/o totally falling apart.

I wish you the best and I pray that you can continue on with just what you are currently using. Way to go and your cheering section will be on stand by, should you need us.

Hope you have a great weekend.

Hugs,
Barbara
Posted 11/24/2013 2:03 AM (GMT 0)
i have to tell you, your in great shape! i really, sincerely not wanting to type because it hurts my lower back and neck and i got to go through the breakthrough pain shut down of everything, nothing on earth with very few exception stops until this stops. i was concerned because from what i know about buprenorphine properties and methadone properties forget the other med they gave you would put you in an abstinence syndrome full blown. i know an Internest who was Navy and then post Navy went into Addictionology and in his residency or some post grad level was with Dr. Drew Pinsky. i don't agree, most times, with Dr.Pinsky. beside the point, i know that Methadone is very lipid soluable much less everything soluable and stays not yet metabolized in tissues for quite some time. i am not sure but i think it has metabolites that are like dextropropoxyphene that have the same long life. i think the only opioid that has a longer halflife is buprenorphine. from the indications in 2008 or so was ! DO NOT ! administer first dose of buprenorphine until the patient is tapered to 40mg or less of Methadone and then they must be in withdrawals first. that has not been true in some cases. same with not benzodiazepines at all or barbiturates or potent hypnotic along side Buprenorphine. that has proven untrue. great job and good luck! NICK
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