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PostPosted: Sat Oct 03, 2015 10:23 pm 
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Hello,

I was on Suboxone for 10 long years.

I am now 2 years beyond the day I stopped, and I write now to inform those who are in a similar situation so they may utilise my experience.

It took about 20 months for the residual effects of what is being referred to as PAWS to subside. I write now because it has been a good 4 months since that point - so I feel like I have the perspective now to properly indicate where I hit about 99%.

The 4 months since that have seen the odd re-occurrence of the 'bad day' factor, only now it's more like a 'bad couple of hours' and it seems to only occur like once a month, if that. Wow imagine that! I had the ol' 'cold sweat/hot flush' when walking again a couple of weeks ago - and it was strange and unfamiliar. 'Oh, that's the cold sweat again, wow it's been a long time since I felt that.' and it was gone within 3 mins.

So - against all desperation know - it does end! You will return to your former glory! It's a slow, hard road - but it does keep gradually improving. Your brain is not broken, don't mistaken the length of time as an indicator that you are permanently damaged - healing just takes a really long time.

I read somewhere once that about 2 months per year of maintenance as a gauge for PAWS duration - in my case this seems accurate.

Ok, so quick advice:

Habits - Before you jump (or taper even) get yourself into an ultimate routine. Everything that is good for your continued development should be part of a scheduled routine. I found that whilst I had no motivation, no drive, no feelings of content or enjoyment for SO LONG I could somehow keep going with my routine. The auto-pilot nature of well ingrained habit seems to work normally in PAWS, without restriction. I couldn't imagine trying to forge a new habit with 0% motivation, and on reflection it is only a good steady healthy routine that kept me from falling into a permanent abyss. Stop moving and you will sink fast. Get some damn good momentum up before you hit the road.

Emotions - yes, PAWS is worse than the acute phase. It goes on forever, and you start to feel like you are going crazy. It's amazing how you can go for an entire year without having a single desire, not being excited by anything, without contentment, without motivation. There's nothing that can help you get through this other than time. Every now and then I would have a good hour, and I would start trying to figure out what in my diet - my routine, may have contributed and try to reproduce the results, however always came up trumps. It seems pretty much random. Good hours here and there evolve into good days here and there. Hell, after a year you sometimes even get a couple of good days back to back! Yes, if you see a doctor you will most likely be diagnosed and medicated for some kind of emotional disorder. An acute disorder at that. However I think the only real fix is time. Knowing that it's part of the process, that yes it really does take that long, and that it will get better eventually - that's all I can offer to help.

Drugs - After 1 week I stopped all medications as nothing seemed to really help anyway and I didn't want to get tied into another loop of addiction. I don't know how I made it - but since that week the most I have taken is ibuprofen for a headache here and there. If I told a professional how I felt I surely would have been more seriously medicated - I was often tempted to do this as I thought any hope of being a normal person was lost, however I was desperate to at least give it a couple of years to first find out if healing on it's own was possible. I AM HERE TO TELL YOU THAT IT IS! YOU WILL HEAL IN TIME! Those words would be such a relief to me 2 years ago, so here they are in their honest glory.

Music - The only thing that made me feel anything other than a mediocre constant emotional emptiness - was music. Music didn't work a lot, but when it did - oh wow, the beauty. Somehow appreciation of some beauty isn't broken by PAWS. I noticed that the music that worked was really sad music, but work it did and it was the ONLY thing I had to look forward to. Sure I habitually looked forward to all of the things that I used to look forward to prior to the jump - however I was quickly learning that these things didn't interest me any more. I was learning that nothing interested me. Nothing at all. Except Music. It didn't work often, but when it did - I would have one of those moments - where the beauty of the music would lift me out of my emptiness and despair - life would be worth living! The fight would seem like it might be just worth something.

The Pay-off - Here I sit - motivated, happy, content (oh how I remember the first day I felt that feeling again, contentedness - it was like 6 months after I stopped I had like 1 hour where I was doing laundry and I felt content, it was the most amazing feeling - how easy to take this feeling for granted when it is semi-constant), excited, looking forward to the future. I have the energy and buzz about me every day now - just like I did after taking my morning dosage - only now it is so much more sustained - and it is so much more relevant - meaning it takes form from good decisions, good actions, good behaviours - it rewards me for my own self development and positive input into others, instead of rewarding me for putting a tablet in my mouth. I was so scared that I would never feel that kind of motivation again, that maybe I was perma-broke and this is why I took drugs, because this part of me was beyond repair. Well it wasn't beyond repair - it is a normal emotion - to feel energised and buzzing with enthusiasm - only when it is natural, it comes guilt free with an extra shot of 'content'!

Other observations,

I couldn't write music, at all. Nothing I wrote sounded like it had anything to say. That lasted almost 20 months.

I could do things, I could get things done. I could go to work every day and do my job fine. I could interact with people fine. I could exist fine - however on the inside I was empty with emotion. When I was in motion I could keep going, no problem. When I stopped, I fell into a heap. I would sit and stare with nothing driving me to do anything. I would lie down, but I wasn't tired, I would stand but I was exhausted. It was like a nightmare - and it lasted so long, but I could do stuff, I could keep my routine going and auto-pilot worked just fine.

Whilst my healthy routines forged on Maintenance gave me momentum to continue without motivation, the lack of drive eventually waned my energy. My routines were ever so gradually drifting in the wrong direction. By the time my motivation started to resurface I had put on a lot of weight, become quite disengaged in every aspect of my life outside of work, and was basically a boring hermit. Luckily, as I was hitting the bottom my motivation was starting to come back, so I went on the reverse cycle - gradually building that momentum back up again. Like I said - 20 months. It was 20 months before I was back into a sustained productive routine. Even now I am much better again, mainly because I have several months of momentum behind me again and I am feeling the positive effects of good health, good relationships and rewarding interests.

After hearing the horror stories, I was so scared to jump (my doctor told me that anyone she has had on Suboxone for over 2 years has ended up coming back at some point after stopping, some up to a year later, to go on to a small dose for treatment-resistant depression - my doctor didn't get that PAWS could last more than a year, I think the medical profession doesn't understand just how long this void lasts and assumes you must have another underlying condition). I spend years eradicating all other forms of vice from my life. Everything that was obviously bad for me in some way I gradually got rid of. One by one vice fell, and like dominoes, momentum made it easier and easier to kick back habits. By the time I jumped off Suboxone I was like a monk. This seemed extreme, even to myself, at the time, but now on reflection I would rate it as absolutely necessary!

Good luck fellow travellers. Feel free to ask me questions.


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PostPosted: Sun Oct 04, 2015 1:20 am 
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What you read somewhere aside, there is no truth to the idea that time on an opioid somehow relates to the time of recovery. And again, your experiences and doctor ignorance aside, I've had a couple hundred patients stop buprenorphine over the past 8 years, and the normal time to feeling normal is 1-2 months.

Buprenorphine acts at mu receptors, as does heroin, oxycodone, morphine, hydrocodone, fentanyl, and a dozen other prescription and experimental opioids. We have experience about opioid maintenance dating back to the early 1900's; the highest percentage of people addicted to opioids in the US was in about 1908, when women routinely used opioids for menstrual cramps.

The idea that time on buprenorphine somehow relates to length of withdrawal makes no sense-- and only contributes to the mythical idea that buprenorphine maintenance is something mysterious or dangerous. So according to whoever first made that comment-- the receptors somehow 'don't care' about the years of heroin or oxycodone or methadone that the addict used? If a person used heroin for 4 years, maintaining a much higher level of tolerance than caused by the ceiling effect of buprenorphine, it's the buprenorphine that relates to the length of withdrawal? That's just nonsense.

Withdrawal is related to several things-- the most important being tolerance. Buprenorphine causes a state of tolerance equal to 40 mg of methadone per day. People on methadone maintenance use 80-100 mg per day in most cases-- but sometimes 2 or three times that amount. The heroin used in the midwest today is very potent, and it takes higher doses of methadone to create sufficient tolerance to block the effects of 'modern' heroin. So anyone taking street opioids has a far higher tolerance than a person on buprenorphine-- which is why there is the risk of precipitated withdrawal, since buprenorphine cuts tolerance in half for many of those people.

The other things that link to withdrawal are personality factors, activity level, general health status, and history of psychiatric problems. Just today, a patient wrote to me to tell me he is '99% back' after 3 weeks off buprenorphine. He has worked the entire time; he is a regional director for a national company that I won't name, but he travels at least 3-4 times per month to states spread across the western third of the US. He is a real go-getter-- more motivated than me, certainly-- and he got through it without much trouble. About 20% of the people in my practice who have stopped buprenorphine miss little work, if they miss any at all.

I also have had patients who really struggled. The people with chronic depression, chronic fatigue, fibromyalgia, or similar issues have the worst time. But I note that NONE of those patients were able to stop opioid agonists-- which is why, of course, they took buprenorphine in the first place.

Many people will say that 'it was harder for them to stop buprenorphine than to stop oxycodone' or another opioid. But when you actually talk with those people, you find that 99% of them never completed getting off the agonist! They stopped for a few days-- maybe a full month if they were in jail--- but immediately used again when they got out. So first of all, they never had any experience in how it feels to stop an agonist for 2 months. (I do, by the way. I detoxed from high doses of IV fentanyl, and the withdrawal was brutal-- but essentially my at 2 months. But then again, I had spent ten years working 36 hour shifts in the OR, so my baseline was working on very little sleep-- so my 'normal' was likely different from some other 'normals').

Most people are in the middle. They need 4-7 days off work when things are bad, at about day 13 or so.

I've had a few patients who complained of PAWS for months. But when I go back and read their charts, I almost always find that they were chronically tired, struggled with mood or motivation, or struggled with depression earlier in life. EVERY person tends to remember the old days as 'good times'; we have a great ability to forget the misery and pine away for the rare days when we were doing GREAT!! Patients are always surprised when I go back and read what they told me 5-8 years ago-- when they said that they had no energy, they were always tired, they couldn't focus... I read that to them to make sure their expectations are accurate. Did they actually have something that we should call 'post withdrawal syndrome? Or were they struggling with a depressive episode? Or were they experience the life of a 45-y-o person for the first time, and comparing it to the life of a 25-y-o? Bottom line-- we all know that some people are more 'somatic', meaning that they are more focused on physical symptoms. A soldier stationed in the middle east has to stand in 120 degree weather in full gear, and stay up night after night. I suspect that person would find the withdrawal to be 'no big deal'. But the people who struggle to get to work every morning even on a good day... or the people who feel too anxious to apply for work for month after month-- are going to be focusing on their withdrawal symptoms for a LONG time.

I can guarantee that if a person is 'struggling with PAWS' at 6 months, and then falls in love with someone who is the love of his/her life, the PAWS is going to come to an end very quickly!

But in any case-- buprenorphine is not 'magic' or 'magically evil'. It is dissolved in the bloodstream, along with everything else in the body-- the proteins, sugars, amino acids, and other medications all 'get in the bones', because blood FLOWS through the bones. When a person stops buprenorphine, the blood levels slowly drop, and are close to zero by 2 weeks. The receptors are in the same state they were when the person stopped any other opioid, expect a bit less-bad off, since the tolerance was not pushed as far by buprenorphine as by those other opioids.

Some people come back to see me at their anniverary dates -- and some just write. DeprAssion can recur-- just as it does in patients who never used opioids. And finally, I routinely see 40 or 50-y-o men who never used opioids, but who are seeing me because they feel unmotivated, emotionless, or depressed. If they used to take buprenorphine, who knows-- maybe they would think it was from PAWS.

I'm glad the misery finally ended for Pat. But the thing I hear more than any other comment? 'That wasn't as bad as I expected, and I wish I hadn't spent years worrying about it'.


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PostPosted: Sun Oct 04, 2015 2:43 am 
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Hi Suboxdoc,

Thanks for your reply. I appreciate your level of experience here and I also understand the message you are trying to portray, and why it's an important message of optimism.

I also sided with an optimistic mindset when tackling my own situation, taking 1 month off work in line with similar advice from various sources, probably yours as well. However when 1 month had passed and things were far from right - I needed to hear from other people who had experienced similar symptoms to re-assure me I wasn't permanently unwell, and it is to those people who I needed to communicate to - with hope and assurance, so they know that if they are going through what I went through - it's OK, it will end, it does improve.

I considered my lifestyle to be about as positive as I could conjure at the time of my stopping. I like to think of myself as a reasonably introspective person, and for a long time now have been interested in my own self development. For instance, prior to stopping Bupe I had not drank Alcohol for 10 years, smoked a cigarette in 15, was the fittest I have ever been with 7 years of routine exercise, meditated daily to increase my awareness and concentration span - as I too am employed at a professional level which has high demands. I also limited my intake of unhealthy and unethical foods over that period - cutting right down on foods with processed sugars, and eating mostly vegetarian and dairy free. This all sounds ridiculous as I read it, in reflection to the society we live in, and to my previous self - but it's true, and for me it is right.

I took myself as far towards a healthy body, mind and spirit as I could consciously envision over the course of the 10 years I was on Bupe - all in preparation for making the big jump, with the intention of being on the 'lucky' side of the scale when I faced the challenge. In my mind, due to my employment, I had to be 100% to perform my work effectively - so I needed to be able to recover in the maximum time I could get off - 1 month.

From another angle - Bupe was a miracle drug for me in this way. It suspended my addiction for long enough to reflect and make all of those changes in a long-term sustainable manner.

I never paid attention to the people saying it would take months. I actually dismissed all of that as 'just people who were still active in their addiction in some way'. I noticed a lot of posts referencing several relapses in the course of their months of PAWS. I had no intention of relapsing - my resolve bordered obsession. I noticed a lot of people taking other medications for months, some to help with anxiety, to help with sleep and others for the symptoms of depression. I had no intention of taking any substances once I jumped off Bupe and was convinced I would do it better than anyone else ever had.

Anyway, here I stand - humbled by my own experience.

Some other interesting details:

Restless Leg Syndrome kicked in for me on the second night after jumping - seemed way too fast considering Bupe's half-life. I was hoping this was an indication that it would be over fast. I actually reported to my doctor after 5 days that I seemed to be mostly over it. I said that the withdrawal seemed to peak at day 3 and it has been improving ever since. I actually thought I was going to be 100% within 2 weeks, told my doctor 'adios!' - as I'll never be back. My doctor remarked that some people do it easier than others and that I must be one of the lucky ones.

In the first month I often had nose bleeds when showering.

My first full nights sleep was 21 days in. I am not someone who has trouble sleeping and within another 2 weeks I was able to sleep like normal.

My nose ran every morning for the first 12 months. I would also sneeze a lot in the mornings. I never thought that would end. My car was constantly full of dirty tissues from the drive to work. I still get the odd day where this happens again but it is far and few between now - like the hot flushes/cold sweats.

Like you said - I was able to function fine. I could perform all of the duties relating to my work after only 1 month. However something in my pleasure systems was completely out of whack. I remember looking at all of the significant dates on a calendar and not feeling anything. Not a thing. I don't know if you can relate to the feeling of looking forward to something good coming up, Holidays, seeing family, a movie you want to see is coming out. That feeling was completely gone. I would then attend these events with the same feeling. I could get through it - no worries, and it wasn't too draining, it just wasn't pleasurable. Nothing was pleasurable. Sex was kind of pleasurable - but not in a contented happy kind of way - more in a manic tension release way. In the first couple of months I realised how people become addicted to sex as it was like a fix to fill the void for me with nothing else available (I would not even allow myself sugar as a means to get a quick buzz, as this is no different to drug addiction in my viewpoint), so I abstained from it also. On the same note - buying things didn't bring me that normal pleasure that us consumers feed upon. I would go shopping and just feel nothing. Even when buying products of a subject nature that I used to be excited about - nothing. I would order a parcel in hope of being excited about it's arrival - nothing. This is good in a way I suppose - that isn't really a healthy way to get satisfaction - but I wasn't getting any happy points from positive social experiences either - spending positive time with loved ones, doing things for others - nothing, no feeling just a baseline of nothingness. Well, those days are gone now thank god. Haha I can go shopping again and get excited! I have several events in my calendar and daily I think about how far away they are and it energises me. I spend time with family and friends and I am left feeling content and happy afterwards. All of the things a normal person takes for granted have returned and I am so thankful.

Anyway, I understand what you are trying to do here, and if what I am saying doesn't fit into that - I am happy to withdraw my comments. I only want to help, which is why I came out of the darkness and presented my point of view - but for the same reason, am more than happy to retreat back into the ether. I do feel somewhat exposed out here anyway hehe. :)


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PostPosted: Sun Oct 04, 2015 6:28 am 
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Good on you Pat!
It sounds like you did everything possible to minimise the physical and mental discomfort in preparation of and during your WD from subs. Thanks for sharing your journey Pat, I'm pleased your in a good place now.
Wishing you all kinds of wonderful..


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PostPosted: Sun Oct 04, 2015 2:16 pm 
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As I've been studying psycopharmacology and psycopathology, one of the things that has stood out to me is that there are people for whom a somewhat depressed state is their normal. The depression ebbs and flows over the years, sometimes causing those feelings of emptiness and then changing back to a less depressed state.

Many people who have had problems with depression start abusing substances to combat it. Because opiates are natural mood enhancers they feel better, maybe even "normal". Depression sometimes starts during adulthood. It could very well be that a person on bupe could mask the depression that they would otherwise be feeling. When the addict goes off bupe the depression that was masked would no longer be masked. Even very healthy, optimistic, and active people can become depressed.

So what if the depressed state you experienced after coming off bupe was your normal at that time? It could be that you came off bupe in the midst of a depressed state, but that you are now out of depression because the nature of some depressive disorders cause them to come and go.

I'm just offering up an alternative explanation. I'm sure there are some addicts out there who would have developed depression at some point in their adulthood, but never known about it since they were abusing opiates at the time, or they were on a maintenance medication.

Please don't feel that you have to go or erase anything you've written. You are offering your experience which is valid from your perspective. I appreciate that like I appreciate Dr. Junig's experience with his hundreds of patients over the years. I am offering another idea that could explain your symptoms, but I'm not pretending to have absolute knowledge. No one here is omniscient. Thank you for your story.

Amy

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PostPosted: Sun Oct 04, 2015 6:22 pm 
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Thanks again for your replies.

It is possible what you are saying. It doesn't ring true for my situation, from my perspective - and without going into my entire life story, from my experience either. I guess that will remain to be seen in the future if the condition returns.

There was definitely a gradual timeline of improvement which initiated with the highest severity at the time I jumped, and then steadily improved all in line with each other. Can depression cause a runny nose? and what about hot flushes when exercising? The hot flushes were intense 3 days after jumping and gradually improved over a 20 month period.

More symptoms that I haven't mentioned were:

Issues with spatial awareness (I consider myself to be a good driver, but for months after the acute phase I would accidentally turn into other vehicles path's and feel 'unaware' behind the wheel of a car.)

Memory issues. My vocabulary was significantly decreased, and I would often pause searching for words. On the same token I would forget the name of songs, movies and people. It would always seem to be on the tip of my tongue - but I just couldn't make the connection.

Both of these were most severe from the point I jumped and have gradually improved since.

The reason I was contemplating removing my comments - it has now become apparent that I could be inciting people who have serious emotional disorders to not seek treatment, and that could be dangerous. I was only really thinking of my own situation, and not contemplating the bigger picture.

I am seeing a lot more experience and qualifications here than my own single experience so I must yield to your point of view on this matter. Having said that - if I was to try and describe a mechanism giving Bupe a different withdrawal phase than full agonist opiates, I would suggest it had something to do with partial agonist properties and the long half life. Even with the most sustained source of full agonist opiates at your disposal - perhaps it never maintains such a continual connection to the receptors as Bupe? With a constant engagement of the receptors over such an extended period of time, is it not feasible that certain changes occur from atrophy of the normal systems?


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