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 Post subject: Quality of Life....
PostPosted: Sat Mar 05, 2011 11:20 am 
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After reading the low testosterone thread and realizing how much we are affected by Sub, or opiate addiction I started thinking about my life on sub..or the idea of long term sub use.

I am a chronic opiate relapser who has had three treatments. I've had 5 years clean, and then 3 years clean and inside of all of the past 15 years had 1 or 2 years clean...Nothing longer than 5 years, however. So, I initially went on Methadone maintenance. I was on it at 75mg for 3 years when I switched to Sub. I switched because of an issue with my daughter. When I jumped from 75mg for 6 days I woke up and realized what methadone had done to me. My symptoms after about a year on it were these:

No sex drive whatsoever, the idea of it was sickening to me. I thought I'd never want anyone to touch me ever again.
No energy. No motivation (I am very motivated, creative and love my work...this was very strange)
I started becoming agoraphobic. Didn't want to leave the house. I'd work, come home, watch tv or movies, read. Did nothing I used to enjoy...I mean nothing.
Depressed, angry
Huge weight gain that occurred at 6 months on it when I was still exercising and a bit motivated.

When I jumped off the methadone I realized those symptoms were not normal for a good life. It was so insidious that I didn't even realize it. I knew I wasn't quite "right" but what I thought was "ok, this is my life now".

I've been reading and talking to people who have been on Sub 2 years or more. Then I read the low testosterone thread and saw how many symptoms some of you guys were having and how taking hormone replacement (test) allowed you to stop taking some of your other meds, increased your energy etc.

But as I talked to others on longer term sub use I am hearing them complain of same symptoms that I had on methadone. and those who have been tapering have now noticed those symptoms....just like me, it was so insidious that they didn't quite realize how bad it had been. We acclimate...we adjust....Its like that story of the frog....You put him in a pot of boiling water he tries to get out immediately.....you put him in a pot of water and then turn on the heat to a slow boil he doesn't realize what is happening and hangs out to adjust.....Addiction was like that and now I'm feeling like my treatment with Methadone and possibly Sub will be like that.

Please don't go off on me about this....these are legitimate fears for me and I would like to get feedback. I am not going against Sub. I believe it works, it saved my life, it saves lives and there are many who need to be on it for long term. I may be one of those people. But my fear???? Quality of life. Do I have to give up my life in order to stop being in active addiction having no life while on replacement medication?
Meaning, will long term Sub use affect me like methadone did and how it is affecting some others currently? That I'll not even realize it and I'll be depressed, reclusive, not wanting relationships, apathetic....

This is a big deal for me. I know I need Sub and I have only been on it for 3 months but I have already noticed some changes for me. Some deeper depression that I initially attributed to a change in the type of wellbutrin I was taking. And I'm getting a tiny bit apathetic...not quite but I'm noticing it some. I don't allow it to happen....but I was a very high functioning addict and after being on methadone was a recluse. And didn't recognize it.

I don't know if I am making any sense...but I want recovery because I want quality to my life. I work a program of recovery very diligently in order to have this quality....and the program I use works well for me....I look around and want what others in the program have....that slower paced mind, that serenity, that kindness and compassion....and overall happiness. I don't want to stay miserable. I've been there far too much already.

So, do I have to decide between remaining in remission on Sub or quality of life? Because if I go back out there obviously I won't have any quality to my life. I don't have another recovery in me. But if being on Sub long term means life like it was on methadone....I don't want that.

I feel kind of screwed. I had 5 years sobriety without any replacement meds so I know I CAN do it again. But it is a risk, too, for me knowing my history.

I know that Sub may not affect me that way....but the point is I may not even notice. And then no one will be able to point it out to me because I will be in denial...like when on methadone. I would have said they were full of it if someone had said they thought I'd changed while on methadone.

This is really concerning...and at this point I'll continue to take Sub, living one day at a time trying not to future trip...but I also believe I need to really think about this.


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 Post subject: Hmmm...
PostPosted: Sat Mar 05, 2011 12:09 pm 
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Well, as I've said on here, I've really struggled with those exact things. I just found a counselor, who my doctor referred me to. Talking to her was so wonderful that I actually started to cry. I told her how long I'd been on Sub and that I felt like it had been affecting my life significantly. So, she went on and asked me all these questions, basically if I'd had this and that symptom, and guess what? They were nearly exactly what I've been struggling with. The ones that jumped out were a lack of enjoyment of previous interests, no sex drive, feeling disconnected, and wanting to stay inside all the time.

However, I don't think this is the rule. I don't think a person who starts Suboxone will necessarily struggle with this stuff. For one thing, I was on a very high pain management dose for a long time. 32 mg is really different than, say, 2 mg. I've been on Sub since 2005. That's a long time and, in retrospect, these side effects didn't become severe for quite a while. The biggest problem for me, though, was that I did not know that the Sub could possibly be responsible for the symptoms. I placed the blame on every single other thing in my life and tried changing so many, many things...and it just didn't work. It wasn't until I started tapering that it dawned on me, simply because the symptoms started to go away. If I had known that this could happen, I would have probably decided against such a high dose. Not knowing to even consider the Sub really set me back, especially because it was something that happened sooooo very gradually. I just wish I knew to consider the Suboxone as a possible culprit, because I do think there are ways to work through it, but if you don't know, then you obviously cannot address it. It's just something to be aware of.

On the flip side, for people who have struggled with very severe and long-term opiate addiction, who likely have secondary illnesses like Hep C, etc., I think it's most likely best to remain on the Suboxone, because if it's pretty much a certain thing that someone will relapse, it's obviously stupid to discontinue it. For some people, that would be like walking to the exacution chamber. It's a judgment call. It's about making the BEST decision you can for yourself with what you've got. And it's an individual choice/call. Everyone knows in their hearts where they stand with their addictions.

There certainly are a lot of us who have battled these symptoms and this forum has been an incredible way of putting our experiences together and connecting the dots. I'm so grateful to have found people who were willing to share their own experiences with me because it makes a HUGE difference to not feel alone in my experience. A lot of us have been absolutely clueless and wondering WTF is wrong with us. There are other people who truly need life-long maintenance, and I don't see why anyone would have a problem with that when the person deciding to do that is comfortable with it.

I know that may not help you at all, lol. I honestly do not have the answer, because I don't think there is any easy answer. I respect you for bringing it up, and I hope you can get some better suggestions. I'd suggest you keep going to your meetings and talking about this to your sponsor, etc. You come across as someone who is very honest with yourself and where you are truly at in your life. I think that will guide you through this.

laddertipper

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First you take a drink, then the drink takes a drink, then the drink takes you. ~F. Scott Fitzgerald


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PostPosted: Sat Mar 05, 2011 12:31 pm 
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Hey chinagirl,

Do you think you could get to a low enough dose of sub, a dose which would address your cravings, but would not cause serious side effects? Kind of like striking a balance between the two? I'm guessing that a lot of the people you talked to were on a high dose of sub for many, many years? I just wonder if a low dose of sub taken for an extended period of time would cause the same side effects? I wonder how the 'stacking effect' plays into all of this. Technically, with sub having a half life of 36 hours or so then one should only be dosing every 36 hours, otherwise your body hasn't had a chance to eliminate enough of the sub before being hit with more? Obviously, I'm not a medical expert, I don't know if I'm even describing the 'stacking effect' properly. I'm just throwing shit against the wall to see if anything sticks.

I would guess you've already considered most, if not all, of what I just mentioned, but I had to mention it nonetheless.

You're only other option, that I'm aware of, would be to try Naltrexone, but it has side effects too. I tried getting on Naltrexone a couple of weeks ago and I didn't like the side effects so I quit. Actually, once I discovered Naltrexone wasn't going to work for me, it made me stronger mentally!!


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PostPosted: Sat Mar 05, 2011 12:58 pm 
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It seems like all opiates, Sub included, can have an impact on our endocrine systems. When I was taking Sub I had to almost double the amount of thyroid hormone that I take for hypothyroidism...and now at 1.5 years off of Sub I am back down to taking the amount of thyroid hormone that I took before I started taking opiates at all. In the years that I took opiates, my dose of thyroid hormone had steadily climbed and never did I have to lower it. Strange.

Anyway, that said...I will say from the perspective of someone who was on Sub for 2 years and then has been off of it for 1.5 years that while I went through a phase of sortof heightened emotionalitly when I first quit Sub, that wore off and nowadays I am as prone to becoming unmotivated and depressed as I ever have been. I've struggled with depression for 20 years and I still have to work hard to manage the condition.

I think the good news is that a lot of longer term Sub patients have found that their side-effects subside with a lower dose. If you can get the theraputic benefits of Sub without a lot of negative side effects then that's great, but at some point I think all of us have to do a cost-benefit analysis and decide for ourselves if it's worth it to stay on Sub, balancing the side effects (which not everyone experiences) with the benefits and against the possibility of long-term abstinence from opiates without Suboxone.

I've said this somewhere else on the forum, but I look at it the same way that I would look at any other medication. Antidepressants, for example, I have struggled with taking them and I hate the side effects and I regularly try to manage my depression without medication. Unfortunately for me, depression is also a relapsing condition so I have to have many good, solid backup plans in place for what I will do (and what people around me will do) should I become depressed again when I'm trying to live without antidepressants. To me, it is worth the risk...to other people, it might not be.

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 Post subject:
PostPosted: Sat Mar 05, 2011 1:15 pm 
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Wow, this is why I like this forum....thanks and I appreciate the responses...

I realize after reading all three responses that I was in a black or white mode about this....all or nothing...because in a way being on methadone was like that...you had to be at a "blocking dose" which they said is 80-100mg and I never did get rid of all my cravings...and I was at 75mg.

I keep forgetting that Sub is quite different. The partial agonist effect...not developing that tolerance once you've hit your ceiling...so I wasn't even thinking find the lowest dose to abate the cravings and hopefully have few side effects. DUH!

And, I had not taken into consideration the dose that others might have been on such as 32mg for a long period of time. So this has given me more to work with in thinking through this...

I have found an antidepressant that works and doesn't give me any side effects...it took about 5 tries to find it. We have to be persistent and patient sometimes, too. I know I am new on sub...I just do not want to find myself in a huge denial back like I was when on methadone. That scares me.

I believe my chronic relapsing means I need to seriously consider Sub as a long term alternative for me. Romeo, I, too have tried Naltrexone...hated it. Couldn't do it. But that is a good idea for others who might not want to be on Sub for whatever reasons.

Thanks again for the thoughtful responses...


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PostPosted: Sat Mar 05, 2011 3:46 pm 
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As some people know, I've been on sub for over two years. And because I take it for pain, I take a fairly high dose (16-24 mg/day). I guess I'm lucky, but I have next to no side effects - not even constipation. I also experience the full spectrum of emotions - Same as I've always felt - I almost wish I didn't. I do have some sweating/hot flash issues, but that could very well be due to pre-menopause.

So speaking only for myself and from my experience on sub, my quality of life is excellent. It's never been better. But I've been working on many issues, including dealing with past traumas, accepting shit I can't control, living in the present and not the past, etc. Overall, I work to improve myself and my life all the time.

I also take many other prescription meds in addition to suboxone. Again, little to no side effects - at least none that I'm aware of. So for me, sub is just another one of my meds I need to pick up at the pharmacy each month.

As I think I and others like Dr. J have mentioned previously, when it comes to the whole idea of not have "regular" emotions, well, feelings are so very complex. They are affected greatly by many countless things and I think people have to remember that suboxone is only one small component that could be affecting one's emotions and other areas relating to quality of life.

As I said, I guess I've been lucky...And for that I'm thankful.

Finally - I'm going to agree with the others who've suggested getting to the lowest dose possible to address the cravings. That tends to reduce many of the undesirable side effects. I hope it works for you.

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 Post subject:
PostPosted: Sat Mar 05, 2011 5:13 pm 
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Hatmaker,

You do make a good point about emotions being so complex and other factors are involved. For instance when on methadone I stopped really working hard at my recovery program....so had I been doing that maybe things might have been different. it's easy to blame these medications without looking at the big picture of what is going on in our lives. So, now, I'm working a strong recovery program...and feel much more contented overall. and, I'll do just like is suggested...get to the lowest dose that will keep cravings at bay. Thanks


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