Putting out fires is ALWAYS the highest priority!

OK, yes, it has been well over a year since I last posted. I wish that I could say that my reasons for holding off so long are that I no longer have this condition or a need to promote its awareness, but today of all days, it is important to make sure that my message is not lost amidst important elections occurring tomorrow and other crises around the United States and the world.
Although I understand and empathize with those who feel the need to focus and promote things like the "Me Too" movement and "Black Lives Matter," when your own life is in personal crisis--for example, you have a debilitating pain disorder that causes you to be in constant, moderate to severe to excruciating pain--the important of nearly everything else is diminished.
As best as I can explain it, I think it is something like you are in danger of being terminated at work or perhaps failing a course in school. Now as critically important as that is, and important as it may be to address that matter right away, now imagine that you suddenly discover that your home is on fire or a pipe has burst and is flooding the lower level in your home. This distinction is what Stephen Covey categorized as "Quadrant 1" matters that are both important and urgent versus "Quadrant 2" matters that are important, but not urgent. Most social and political matters fall into that latter category, and for me, the pain I feel can so dominate my senses that other than deliberately distracting myself with work-related tasks or issues involving my wife, children, or immediate circle of friends, even some things that I would normally consider important turn instantly trivial.
For those who have felt offended by me or even friends who have felt abused or neglected at any point over the past 15 years, I can only partially explain my selfishness in this way. It has to do with something now affectionately referred to around the Internet at the "Spoon Theory." It is well explained at this site but I don't know whether someone who does not themselves suffer from some kind of chronic pain can really understand. In many ways, I think it is very much like Blacks telling Whites that they could never understand how it feels to be Black, or women (particularly those who may have been raped or assaulted) telling men that they could never understand how it feels to be a woman. While it is true that everyone knows what it is like to experience pain, to experience the worse pain imaginable and to have it persist over weeks to months to years... you just can't know what it is.
Now, I don't say it for the potential sympathy or pity that it may elicit, but rather just to point out that I have a perspective on life that most cannot understand and that it colors my view of everything--especially my future, but also my present, especially when emotions are involved. It has been easier for me to simply shut myself down emotionally, and it took some long and blunt discussions with Stacey for me to understand how being emotionless with those who care about you can be as bad as being mean or hateful with the things you say or do.
So I am sorry if you are among what I am sure is a large host of individuals to whom I could (or should) have paid more attention or given more of myself. The way I see it, that kind of thing is often difficult for some and missteps occur even among those who consider themselves outgoing and engaging personality types.
I will not ask for forgiveness per se because I do not think I need to from anyone, but I will ask for your understanding, and if our friendship has ever had any meaning for or importance to you, then perhaps you could reconsider the significance of whatever perceived offense you feel excuses you for being mad at me or not talking to me?

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.

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.

The Real Solution, Part 1: Bedeviled by Forbidden Fruit

[After further contemplation, I opted for a different title, and reorganized the blog so that it was not as long. It is my intention, however, to complete this series by the end of June and then edit and compile all blogs-to-date in a PDF brochure-type document that can be printed and shared.]

Everything really serious with my condition started really in early 2004, but it was only a couple of years into its progression that things really . The exact diagnosis had not yet been ascertained and I was not even sure that I would even live much longer. From the procedure that first set off this condition of mine, it took relatively little time for me to progress from Vicodin (a combination of Acetaminophen and Hydrocodone) to much more potent medication like Percocet (Acetaminophen and Oxycodone) and then eventually to just Oxycodone. Then I started taking progressively higher doses of Oxycodone, but the intensity of the pain would return every few hours and when it did, it was a miserable block of time waiting until my next dose could be taken and then "kick in." Finally, the best solution was to combine the Oxycodone with Methadone. Without experiencing any benefit from the pleasure-filled, euphoric effects that makes drug users seek so intensely after these very medications, I continued needing more and more of each medication--less because I was building up a tolerance to them, but more because the intensity of my pain continued to significantly increase as time when on.

A little more than two years after the initial incident, I was faced with the very real prospect of having to retire early from teaching. I had reached a point where I was taking 10-15 mg of Methadone and about 30 mg of Oxycodone every day and relying heavily on stirring up my own Adrenaline to punch my way through five consecutive work days so that I could recuperate over the weekend. Even at those dosages, however, it still only took the sharpest edge off of my pain, and my ability to think clearly and remember things accurately was fading in very obvious ways. That, along with the intensity of the actual pain, made solving physics problems quite challenging, even for me with both a college degree and a natural gift for physics and math.

Following the surgery in May 2006 to implant my spinal cord stimulator, I was able to enjoy a few months following the surgery where I went down to just a half dose (2.5 mg) of Methadone and only using a single Oxycodone (5 mg) when the pain was at its worst, but it was so much better (relatively speaking) that I thought I might be able to go back to a nearly normal life. Unfortunately, it took less than a year before I was back on a regimen of Methadone and Oxycodone that was again interfering with my thinking and memory recall.

This is the perpetual danger that those with chronic pain conditions must face: there is an ongoing temptation to rid yourself of pain, but the only way to effectively do it is to take so much opioid medication that you effectively change your personality and lose your ability to think as clearly. While the pain eats away at you and takes away the things that make you human, the medication that eradicates the pain does little better. While functional, when using the traditional (what doctors call "full agonist") opioids, your personality is radically altered and you lose bits of your working memory, so you become a different person. Either way, you are no longer you.

Either way, once you become afflicted with a pain condition, your life will change. The only thing over which you have some control is how it will change. As is true with so many other things in life, you are faced with determining, and then subsequently choosing, the lesser of the evils.

But what if there was a third option? One that required sacrifice, but one that was the "least" evil?

Next blog (to be posted on or around Wednesday, June 14th): The Real Solution, Part 2: Climbing Everest

Bad Solution #3: Just Deal with It

Another way to look at this solution is just to not look at it, or let the status remain "quo." 

The most popular way of dealing with this problem is to simply ignore it. It's the path of least resistance because most people who have a chronic pain condition slowly fade out from the lives they used to have. They stop going out with friends. Many lose their jobs and are no longer able to work at all doing anything because employers are no required to accommodate conditions that are completely intermittent and unpredictable in their intensity and duration, nor should they be. However, one consequence is that those with chronic pain soon become a forgotten people and no one remembers them who do not go out of their way to maintain those bonds.

That, of course, is hard to do because if you do care, you feel helpless when you cannot do anything to comfort that individual and you may even think that you are harming the situation to visit and remind your friend of the life that they used to have. While there is certainly some of that, it wouldn't be inappropriate to have that conversation directly with your friend. Just ask the friend directly; they'll be glad you recognized the need and cared enough to ask.

Other than the incident of a person who overdoses (and apparently was some kind of angel right up until that incident), the media and society don't seem to care much about those with chronic pain. The issue of opioids and who is taking them doesn't seem to matter until someone gives in to their addiction and takes too much.

You won't, however, often see a pain victim overdose on opioids. We can't afford to risk that. If we are at that point of being genuinely suicidal, most will do something far more abrupt and more likely to be successful than taking pills. Pain victims also live in fear that any act of straying from their prescribed regimen might put them at risk for a doctor cutting them off from more medication, making suicide the only option left.

Sadly, depending on how bad the pain is, some chronic pain victims can't reach that euphoric state that makes opioids so tempting for others. Without even considering issues involving tolerance build-up, chronic pain victims first have to relieve their pain before any pleasure can be felt. The amount of medication needed to achieve that would be enough to cause serious problems and slowing respiration.

I hope that this series has been informative for you thus far. My next few posts should be more regular now that the school year is ending... not that don't work over the summer months. Even after 20 years, I still spend many days over the summer preparing things and planning lessons for the coming year.

As the blog continues, I will present my thoughts on a real solution for the so-called opioid epidemic. My solution is not complicated and it is a genuine solution. My solution is one that doesn't blame or hurt those already dealing with a legitimate pain disorder and and also one that acts prohibitively against abuse from those seeking to get high leading to the complications of overdose.

Next post "The Real Solution, Part 1: Remove the Temptation," will be published on or about May 28, 2017.

Bad Solution #2: Aversion Therapy

Another flawed solution to this "opioid epidemic" is born out of good intentions, and it is the one at the top of the FDA's list of solutions to the problem. It involves making prescription opioids "unappealing" to those solely interested in the euphoric component and "getting high."

Naltrexone and naloxone are two medications that are used in addiction recovery. Both of these drugs work in the body to directly counteract the effects of opioids. These and other similar medications are now often being paired and manufactured with opioids. They can be formulated so that, when the opioids are taken "properly" they will pass through the individual and eventually be harmlessly purged through urination and perspiration. These are prescribed for those feeling pain and work just as effectively as the traditional opioid-only prescription medications. If, however, the medication is misused--like when a pill is crushed for snorting or for processing into an "injectable" form--the opioid-blocker part of the medication kicks in. Although manipulating the medication in this way would normally increase the speed at which the opioid is metabolized and increase the speed and intensity of the euphoria experienced by the user, the "partner" in this medication tandem prevents the opioid from working altogether, and can actually induce the unpleasantness of withdrawal effects.

The downside here is that the medication must be inappropriately manipulated in order for the opioid blocker to activate. There is nothing to stop someone from keeping the medication in tact and then still overdosing on the medication in its natural form. This idea is, however, being touted as the best solution to this opioid epidemic as though any attempt to abuse the medication will prevent it from working, but it must be misused in a very specific way for this solution to work. In short, it prevents misuse, but not abuse, of the medication.

The alternative would be to find a way to manufacture a drug that prevents abuse which is a far greater problem than the misuse I was just describing. "Antabuse" (not kidding, that's its name, but the generic drug is called Disulfiram) is a drug that has successfully been used to help alcoholics shake off any "desire" they might have to drinking. This medication creates the nauseating effects of binge drinking every single time a person drinks. The premise is simple, have the brain either associate something negative (like nausea, vomiting, and a headache) with the intake of certain substances. It is a very effective program, and certainly, something similar could be developed to pair with opioids, like ipecac that would make a person violently ill every time they took the opioid. However, the downside with this tandem is that you have to take it voluntarily and only a person who wants to avoid the euphoria and break their own desires for that "high." Obviously, it would have no appeal for those legitimately taking opioids for pain relief. It would only serve those who have made a conscious choice to associate the effects of opioids with something negative.

Neither of these options are good options in the sense that one (the first) operates completely on a principle of distrust and the other only works in an environment of total trust.

The net result of these approaches, and, to repeat, the first one is being touted by the FDA as the best solution to this current societal problem, is that it treats all opioid users, including the predominant users who are in genuine pain, as the criminals responsible for causing the problem. And yet, the worst of it is the reality is that anyone intent on abusing opioids can still freely do so.

Next post "Bad Solution #3: Just Deal with It," will be published on or about April 30, 2017.

Bad Solution #1: Association Theory

There are several ideas for how to best handle the "Opioid Epidemic." One of the approaches focus on demonizing the individuals who are "contributing" to the problem--those who are originally prescribed the medication. Some of these are people who were at some point in their lives experiencing a significant amount of pain and for whom, the usual methods of quelling that pain were insufficient. They did exactly what they should do in such circumstances: seek help from their local family doctor if they can get in quickly enough or the more likely case of seeing whichever doctor happened to be on-call at the local Urgent Care center.

These doctors, in response to the expectations and limitations of what insurance companies have deemed acceptable practice, gave these individuals the narcotic of the day. Why some doctors favor hydrocodone (Vicodin) over oxycodone (Percocet) over codeine (Tylenol #3 or #4) is anyone's guess since most general practice or family practice doctors know very little about the difference between those medications other than they are part of what has become standard issue. However, in whichever the case, doctors are allowed to prescribe up to a month of medication and since the likelihood of seeing that patient again is small, they have to gauge what is an appropriate amount to tide the patient over based on their assessment of the patient's pain level with a recommendation to seek assistance from their family doctor who will then be able to make a referral to a pain management doctor if they feel that is warranted and the pain continues to persist beyond the 30 days of script.

Of course, pain that does persist beyond 30 days of opioid relief would technically be considered chronic pain and require the intervention of a pain management doctor. However, getting in to see a pain management doctor will likely take a few additional months at a minimum and leave the regular non-specialist in charge of managing the patient's opioid scripts.

Well from the very first script administered, there is no telling how effective the original opioid will be. There are subtle differences between the different opioids out there (beyond potency) and those differences will mean that while some will work fantastically well for relieving an individual's pain, others will have almost no pain-relieving effects and still others will have direct effects or side effects that are unpleasant in the least and nearly fatal at most.

One of the most significant consequences of this, very typical, situation is that people end up with an abundance of prescribed opioids that they are adverse to taking, yet fearful enough of the pain to not want to simply dispose of them. Never having had the need to secure their medication in a locked encasement or at least hide it from anyone, most individuals new to taking opioids will treat them no differently than any other medications they have been taking at various times in their lives. Then, the local and national media puts out stories about how enticing these drugs are and rather than risking getting caught in some salacious drug deal, everyone from innocent and ignorant teenagers to genuinely malevolent drug seekers find that they suddenly have easy access to either easy money or an easy high or both.

Meanwhile, there is an important, but smaller subgroup of chronic pain survivors who are doing what they need to--safeguarding their opioid medications because without them, they are living in extreme and incessant pain, or as I refer to it: relentless agony. They are not responsible for the influx of opioids on the street and in the local schools. However, the reaction by legislators and the media is to lump everyone who picks up a script from their local pharmacy as someone who is responsible for the idiot kid "with the bright future, who never did drugs before this incident" dies from an overdose because he didn't seem to understand that a person who isn't in pain and hasn't been issued a prescription shouldn't take three times the daily maximum of that opioid at one sitting.

Sorry, but the real demons here are the ones committing the felony by selling and dealing the drugs, and the ones who are taking those drugs deliberately intent on getting high, and the idiot legislators and media reporters. Before society can understand what the best solution to this problem--this "opioid epidemic"--is, they need to understand that associating chronic pain survivors with drug dealers and drug addicts is unfair and, itself, contributing to the ongoing problem.

Apologies for getting this post out a week late. Beginning with this post, I will be back on a two-week schedule. Next post, "Bad Solution #2: Aversion Therapy," will be published on or about Sunday, April 16, 2017.