Friday, June 23, 2017

The Real Solution, Part 3: Climbing Back Down the Mountain

While we often readily imagine the challenges associated with a task like scaling a mountain, it does not come as readily to mind to remember that after feeling the catharsis that must assuredly come with achieving such triumph--particularly for those who decide to specifically tackle Mount Everest--that the victor cannot dwell on that moment for very long before beginning what must, in its own way, be an equally-challenging descent back down the mountain. Everyone knows that "you cannot get something (good) for nothing" and also that "if it sounds too good to be true, it probably isn't true." So here are some of the "cons" that go along with the decision to try Buprenorphine for chronic pain relief instead of other opioid solutions....

As is true for all opioid medications, the slight variations in the structure of the molecule means that for different people, some medications will work very well and some will not. There would need to be a way to determine quickly whether or not Buprenorphine worked for someone or not, and then a means of determine which would be the best "next alternative" to consider if it did not work for someone.

The harsh reality of my life is that because of the intensity of my pain, I have tried many different opioid medications. While most were weaker in their pain-relieving potency when compared with Buprenorphine, other opioids do not have any "ceiling effect" associated with them, so the more you take the more pain-relieving effects can be felt, and eventually, once the pain sensation has been completely blocked, the individual begins experiencing feelings of pleasure as well. That is almost never going to happen with Buprenorphine. In fact, Buprenorphine will likely not, by itself, completely relieve the pain of anyone whose pain is above moderate levels.

For me, this is acceptable because the trade-off is that Buprenorphine gives me back the mental strength that helps me to better cope with the pain on my own. To me, this is more valuable than raw pain-relieving power because I also need that mental clarity to continue teaching as well.

I have been fortunate, though, to have worked for many years with a progressing pain-management physician--one of the pioneers and leading experts in the field. He and I worked together to try nearly every opioid legally "prescribe-able" along with a few other medications that have been known to have secondary effects of pain relief. Interestingly, many of the medications that I tried, a few of which are even considered especially potent for pain relief (i.e., Fentanyl, delivered directly into the intrathecal space of my spinal cord), made it more difficult for me to fight off the pain because of how they robbed me of my higher brain functions. It creates an interesting dilemma: do I so want to rid myself of the pain that I am willing to just progress through the rest of my life in a mental fog, sleeping most of my day away and being a drain on society and on everyone who cares for me, or am I willing to sacrifice some pain relief to get back my mind and use that mind to fight through the pain and still be alert enough to live life, socialize with loved ones, and contribute to society? I ultimately chose the latter.

For many months during the first few years of the onset of my condition, the tandem of Methadone for long-lasting (8-12 hours) relief along with Oxycodone for "breakthrough" (more intense) pain (2-4 hours) worked best for pain relief. It was not perfect, but it was the best combination of opioids that took the edge off the worst of my pain and got me through my school days well enough so that I could get home and collapse from exhaustion. (Amusingly, despite the fatigue from fighting off the pain all day and the sedation of the medication, I have always struggled to get any significantly restful sleep since the pain started. As a natural cynic, I appreciate the irony that I am completely exhausted and yet struggle to stay asleep for more than 30-45 at any time.)

Well, as I continued to try different medications, without significant success, it finally came time to try one final medication, this Buprenorphine. However, unlike the others, my doctor said that I would have to completely wean myself off of the existing regimen of medication before I could try the Buprenorphine. I would need to go without any pain relief except for what I could get from my spinal cord stimulator for 48-72 hours while my body worked through the existing supply of Oxycodone and (particularly the) Methadone. It was a scary prospect for trying a medication that might not have any relieving effects for me at all, particularly because it would take another 48-72 hours following my last dose of Buprenorphine before I would able to restart my original opioid regimen.

You see, Buprenorphine doesn't get along with other opioids. Unlike my previous regimen of taking both Methadone as a slow-release medication and Oxycodone for the most intense, "breakthrough" pain, Buprenorphine is only for long-lasting relief and cannot be combined with any other pain relievers. It will completely block the pain-relieving effects of the other opioids in your system so well, that it is now replacing Methadone as the drug of choice to help people overcome addiction to narcotics.

Having very few options, because the status quo was simply not acceptable, I waited for a longer break during the school year (I believe that it was Christmas time) to cease those regular opioids and try the Buprenorphine. Fortunately for me, I noticed other benefits right away, as did my family. Within two days of switching to Buprenorphine, while my pain was reduced a little less effectively, my thinking ability, memory recall, and even my personality (which I hadn't even noticed was as affected as it was) came back. For the first time in a couple of years, I felt like "me" again, and while the medication did not relieve the pain as well as the Methadone-Oxycodone tandem, with my mental faculties back again, I was better able to cope with the moderate pain I was still feeling. The combination of the spinal cord stimulator and Buprenorphine had brought me to a point where I was able to reclaim much of what had been lost with the onset of my pain disorder!

Making the switch to Buprenorphine and reclaiming my thinking, memory, and personality was like reaching the peak of Mount Everest, but I needed to muster up all of my courage and put together a safety net of loved ones around me to support me through the process. Without those things in place, the temptation to just give in and go back to my regular meds without even trying the Buprenorphine would have been the most likely outcome. However, now that I achieved that, I am still enduring the process of scaling back down, a journey I suspect will last me the remainder of my lifetime. 

I still struggle daily to fight off the moderate to severe pain I am always feeling, but I know from experience that without the neurostimulator and Buprenorphine, my pain is both constant and so excruciating that I doubt I would last more than a couple of days in that state. As it stands now, I have enough of my mental faculties to use my own coping skills to make up the difference I need in pain relief to get through my day until the next day begins anew. It may not be the kind of life that I imagined, but it is a life and I am grateful to be around and coherent enough to appreciate the feeling of helping a student do well in my class or playing catch with my son or watching a movie together with my family. None of this would be possible if I gave into the pain and laid in bed all day.

So my miracle drug is, I believe the solution to this so-called opioid epidemic. It will not only greatly decrease the amount of other opioids in circulation, but there would be virtually no incentive or appeal for those seeking to get high to obtain Buprenorphine.


It would mean a significant movement in re-education though--both for society at large (especially those in pain) and also for the entirety of medical professionals and pharmaceutical companies. More on that in the next blog.

The next blog ("In Conclusion: How the Medical Profession Needs to Change") will be posted on or around Sunday, July 2. Please do whatever you can to refer others to this blog series, especially if you happen to see a TV report or read an article anywhere regarding this so-called opioid epidemic.

UPDATE: This series and my concluding thoughts on the matter of Buprenorphine is currently on hold. I will seek to resume it and conclude it shortly after the 1st of January 2019.

Wednesday, June 14, 2017

The Real Solution, Part 2: Climbing Everest

In May 2006 I had had a successful surgical intervention with an implanted neurostimulator, but by December of that year things started slowly worsening again--a consequence of this genetic defect within me, this strange variant of Complex Regional Pain Syndrome. I was at a low point in my life--afflicted with constant, severe pain and taking a regimen of Oxycodone and Methadone that was negatively impacting my ability to teach at the level and quality I desired to deliver to my students as they prepared to face their future academic challenges in college.
It was then that I had a hard conversation with my doctor and was willing to make a desperate attempt to save my career. My doctor told me about a medication that worked differently than other opioids. This medication, Buprenorphine, is unique among all other narcotic pain-relievers in existence. It is what doctors call a "partial agonist." There is an excellent graphic that explains the difference in how Buprenorphine works in the body and why it is better than other opioids that you can see by clicking here.
In short, the way Buprenorphine is processed in your body is not unlike how it processes Vitamin C (in the most general sense--it's obviously a very different chemical processed by a completely different system, but the analogy works). You can take tons of it, but your body can only handle so much and it then funnels the rest directly into "waste extraction." In essence, it is extremely difficult to "get high" on Buprenorphine. For me, in terms of the pain relief, we initially took a few months to determine how much of the medication I needed to get equivalent relief, but Buprenorphine is much more powerful than most other opioids despite the fact that it metabolizes so differently than other opioids.
Morphine is the typical standard that is used from which to compare opioids, and even though there is a lot of personal factors associated with metabolism and height and weight that need to be considered, but all things being considered equally, Buprenorphine is considered to be about 40 times more potent than Morphine and Vicodin, and about 400 times more potent than Codeine. There is a very comprehensive chart at this link that shows the relative strengths of pain relieving effects in the body including some synthetic drugs are are only used to sedate large animals.
I have now been taking Buprenorphine for about nine years and it still continues to meet my needs--that is, along with my neurostimulator this medication makes what is considered the most intense pain condition known to medical science tolerable enough for me to maintain a full-time position as an educator teaching physics to college-bound high-school students. To me, this is a miracle drug and has restored my life. While I know that each person's metabolism is different and this may not work for everyone and every kind of pain, you have little to lose and so very much to gain.
I remember feeling an epiphany ...a moment of tremendous clarity when I realized that my personality had changed radically along with the loss of my higher levels of thinking and memory. Once I started exclusively on the Buprenorphine, I felt like I was emerging from a fog and I could see the Sun again after literally months of deprivation. It hasn't been perfect, but it has definitely been worth it and the best decision I have made even above my decision to get the neurostimulator.
However, like the decision made by a few daredevils in this world, I liken this decision to climbing mount Everest because it requires significant mental and physical preparation and building up an endurance to make the long haul of what I believe will be several more decades of my life living in constant moderate to severe levels of pain interspersed with occasions of excruciating pain. I imagine that there are some would willingly die to sooner end the torment not unlike those whose corpses litter the path to Everest's peak. Indulge me a little longer while I describe the pros and cons of making this choice....
Next blog post ("The Real Solution, Part 3: Climbing Back Down the Mountain") will be posted on or around Wednesday, June 21.
Post-script note: For those who are being treated with Buprenorphine for addiction, I think that there is a reason why so many centers that used to use Methadone are making the switch. By interfering less with the higher brain functions, in the same way that I now rely more on my own ability to cope with the pain, those who are truly interested in recovering from addiction will appreciate having the mental strength to do so.
Methadone was once the only real option for heroin addicts wanting to clean up their lives before an overdose ended them, but Methadone--despite being synthetic--is still, itself, highly addictive, and heroin addicts in the past were often only trading on one addiction for another that was only regulated better without necessarily being better. I believe that Buprenorphine holds the same potential for a miracle for addicts as it does for chronic pain victims, and greatly increases the probability that a "former addict" can reclaim much of what was lost of their past and who they were as well as hope for being a positive contributor to society.
I would love to hear from any former addicts who are now taking Buprenorphine, particularly those who once took Methadone, but any experience--even if it does not perfectly validate my position--would be a welcome contribution to this blog.
Post as a comment or email me at info@relentlessagony.com if you would prefer to maintain your anonymity, and just write your words in such a way that there is nothing personally identifiable so that I can pass it along without having to paraphrase it.