Kicking Suboxone: The Last Milligram

By Dee Roberts 01/14/15

I could not let go of that one last milligram per day and I needed help.

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I had become a cliche. Recently divorced, overwhelmed and addicted to painkillers. After two years of swallowing hydrocodone plus acetaminophen tablets the lining of my stomach was torn up. I got sick when I took the pills and sicker when I didn’t. The relief I’d once gotten from a Vicodin-vodka cocktail stopped working; this run was really over. I started doing Internet research and found that a new medication had been recently approved. It promised no downtime from work, no rehab stint and absolute discretion. Perfect for a professional pretending not to have a life-threatening problem.

I was one of the first waves of people who were prescribed Suboxone when it became available in 2003. From the start, the protocol for the medication’s use did not include an exit strategy. Not one doctor who saw me suggested I consider going off the drug. I stayed on it for over 10 years until the side effects added up, motivating me to make the final jump.

This process has been no walk in the park.  I’ve heard Suboxone maintenance referred to as “withdrawal avoidance.” The truth in that statement stings. I developed a deeply rooted, overwhelming fear of not having medication with me. My behavior on Suboxone and while using had some alarming similarities. 

I was started at 16 milligrams and stayed there for seven years. During that time, the laws around the use of the drug and my insurance company’s willingness to pay for it changed several times. I spent over $50,000 out of pocket on doctor’s visits and drug co-pays. The physicians involved in prescribing it evolved into a mixture of ethical, eccentric and downright shady providers. My dependence was a secret weight I carried around with me. If it weren’t for an adrenal imbalance, I may well have continued for many more years.

Since there have been no long-term use studies on Suboxone, side effects are often downplayed or ignored by the medical community. After a couple of years, I had personality changes. I felt oddly disconnected from events in my own life. It was like watching someone else’s story play out. The sad part is that things were going badly. My career was on the skids, and I felt helpless to do anything about it. I was unable to put words to the experience at the time, but I knew something was deeply wrong with my responses. The fighter in me had retired without notice. On top of that, I had developed a skewed appetite. Regular meals held little appeal, and I found myself living from sugar fix to sugar fix. The final straw was my hair falling out. Seeing my scalp shining through strands of hair after a shower shocked me enough to  take action. I had a battery of tests done to try and figure out what  was going on. My hormones and thyroid function were the source of some of the symptoms, but I was too scared to tell anyone about the more frightening things inside my head. At the beginning of my taper I was 40 pounds overweight and totally miserable. 

After several consultations I found a doctor who was willing to help. While the stigma of addiction is tough, finding a doctor to help me end this dependence was harder. Doctors were not thrilled to encounter a patient who wanted to taper off Suboxone. As if waving a voodoo doll, I was warned multiple times about tempting relapse. By the time I made the decision to get off this drug I was 11 years past my last illicit prescription. I have never had the desire to go back and visit Vicodin. Maybe because of how sick I was at the end, any thought of a Watson 357 ended with the memory of vomiting blood. My original addiction was never a social one. From the start it was a dark and isolating experience. That, in itself, offers no immunity to relapse. Just the same, each time a doctor told me “no” I became more committed to going through whatever it took to be free. 

I went down two milligrams every two weeks until I was down to four milligrams a day. I gained confidence during those first 12 weeks. That all stopped when I hit the wall.

The jump from four to three milligrams was when my fear kicked in again. I started having pains in my stomach and in my legs at night. Insomnia ensued. I stocked up on melatonin and other herbal supplements that were recommended to me. After a couple of weeks I was able to sleep through the night again. During this process, it had been difficult separating real withdrawal symptoms from psychosomatic ones.

The jump from three milligrams to two was slow, but uneventful. I still experienced some random stabbing pains in my stomach, but they passed. Two milligrams was my personal ceiling dose. It took several attempts to get the tiniest amount under it. On the positive side, lowering the amount of buprenorphine in my system swept the cobwebs from my brain. I woke up as if someone doused me with an icy bucket of cold water. Very suddenly, I began to make connections and come to conclusions about what was going on in my life. Mental clarity is a double-edged sword. While I started working overtime doing damage control, I was often seized with regret over so much wasted time.

I scoured the web for forums where I could share my tapering experience with others. The results were mixed. I got tips from people who had titrated by cutting the strips into tiny pieces,  slowly lowering the dose every week. There was other information I may have been better off not reading. People shared horror stories of their final “jump.” Months of depression and weakness, inability to work or care for families. The YouTube videos were the worst. I watched clip after clip of people talking about getting off Suboxone, but were so intoxicated on other substances that their comments made little sense. I would hear about a symptom, and then a few days later I would experience it. The situation started looking grim.

When I hit 1.5 milligrams all hell broke loose. I got extremely emotional. Some days I’d wake up in a full blown rage, and other mornings I would awaken in tears. My mood got so dark that it frightened me. I began having suicidal thoughts, and decided I was a worthless burden to to the man who had been at my side from the very start of this odyssey. Luckily, during this time I had made contact with a few people from the online forum whom I started talking to. I took complete strangers into the darkest corners of my thinking. I will always be grateful to the people who checked in with me when I disappeared from the online conversations, because without their support, I might not have had the courage to keep going.

It took six months to stabilize at 1.5 milligrams. I was having temperature dysregulation, which means that I would go from hot flashes to freezing cold throughout the day and even more intensely at night. I also had horrible headaches, and the continuation of stomach and leg cramps. I had about 8 “good” hours a day when I could go to my office and be productive, but then it was over. I would drag my self home, and crawl upstairs to bed, unable to sleep or function socially. 

I got lucky, and going down to one milligram was less difficult than the previous titration. The next hurdle was getting below that level. At this point, I adopted a puppy. The decision had nothing to do with me, and everything to do with my eight-year-old Labrador, who was showing signs of depression himself. I hoped the new excitable boy in our family would perk up our elder dog.

The new puppy (I’ll call him "Spot") is a Border Collie mix. This breed has to run for at least an hour every day. If they don’t get enough exercise they start exhibiting obsessive behavior like tail chasing, clothing and blanket consumption and generalized anxiety. My days started at 5:45 AM when Spot would wake up and  literally pull me by my pajama sleeve out of bed. There was no avoiding exercising him. I started by walking Spot three miles a day. Then, apropos of nothing, I began to run with him. I was shocked by the results, both Spot and I were transported to a different mental state. I found out that dogs experience endorphins at three times the level that humans do. No wonder Spot just had to run. While I didn’t love getting up while it was still dark outside, I was exhilarated by the change in attitude intense cardio gave me. Our runs started increasing in duration.

There were a couple of false starts before I got comfortable at .75 milligrams. Physically, I was still having hot and cold flashes, and my emotional state was all over the place. I did, however, see the light at the end of the tunnel, which was a powerful motivator.

I decided that the week between Christmas and New Year’s was my best opportunity to make the jump.  I started whittling away at my tiny orange pieces, and got down to .50 just in time for holiday madness.

It took about three days for my body to react to the lower dose. This new hell rendered me unable to get more than a few hour of sleep per night.  On Christmas, I stayed awake for 24 hours, and then slept fitfully for the next 16.

From my extensive research on Suboxone withdrawal, I discovered that some people are unable to stabilize below a certain dosage. It’s different for each person, but once that place is reached, you might as well jump. After six months of monitoring and documenting every symptom, I was anxious to get the last part of this drawn out ordeal over with. I decided to stay at .50 for another 3 days, go to .25 and then step off.

Sleep deprivation is an enhanced interrogation device for good reason. After a couple of days a new reality sets in. Any sense of certainty was shaken to the core by my inability to get regular rest. I’d fall asleep between bouts of sweat-inducing heat and covers-snatching cold and then sit straight up at about two in the morning. Some nights, I would try to visualize the warm and cozy bedroom I lay in, with 2 dogs, a cat and my partner, all sweetly dozing. Occasionally it worked, and I’d spend the hours feeling safe. More often, I was gripped by nameless fears, and a sense of impending doom. I was reminded of withdrawals I had put myself through 10 years ago, and the reasons I kept going back to a drug that was wrecking havoc on my body. The pains in my stomach now extended to all of my joints, which made getting comfortable impossible. The most difficult hours came between three and five o'clock in the morning. It was during that time when my ability to imagine a normal future for myself started slipping away.

Fortunately, no matter how miserable we feel, the sun rises on another day. With the sunrise came the familiar tug of Spot’s muzzle on my nightclothes. On two ill-fated days I was unable to go for our usual run, or even get it together to go out and walk. I felt so weak and shaky that I couldn’t imagine leaving my room. Spot’s reaction was to quietly begin eating his toys, his bed and even a pair of panties. By evening, the poor creature was seized by a terrible bout of nausea. He gagged and cried, sporadically retching up a piece of what had been his favorite playthings. The next day, I forced myself to take a run with him and was shocked to see an undigested black lace thong trailing from his backside. Clearly, Spot was having as bad a time of it as I was.

When I used to wake up hungover, I remember no greater joy than the hour of four in the afternoon, when headache and jitters subsided. Because of the misery endured in the hours before, just feeling normal felt extraordinary. I can say the same about Suboxone withdrawal.  My sleep is not consistent but I have more hours of feeling okay every day. My love of music has been revived. I don’t remember "Angry Rock" ever sounding quite this good. The volume also got turned up on my libido. I guess you could say I’ve reverted to an adolescent state. If this is a mid-life crisis, I don’t mind.

I’m by no means done with the jagged edges of the experience.  My emotional state remains tenuous. This morning at 9 o'clock, I was ready to get in my car and just drive. For right now I am not going anywhere. I feel like a newborn mouse, freezing without a coat, unable to see or hear clearly. I’m going to sit tight and not make any decisions until my skin fits right again, which could take a little time.

If you or anyone you know is considering Suboxone, or wants to get off of it, there are some resources that I found useful. This one is brutally honest, but focuses mainly on the negative aspects of the drug. Drugs Forum has some good information, but be aware of posts from people who are still using. Dr. Steven Scanlan is one of the few doctors who treats clients tapering from Suboxone. His article has been the most helpful to me, because of its unbiased tone. I wish all the best for anyone walking the path back to “real life."

Dee Roberts is a pseudonym for a former Vicodin Addict from New York with a Border Collie as a sober companion.

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