tysmyboo said...
WHERE IS BEN!?!??!? I meant to ask yesterday but I have really been struggling...
I'm sorry to have disappeared. I got out of the hospital on July 14th or 15th, having withdrawn from oxycontin and undergone a second course of IV ketamine infusion. My thought had been that the benefit of not having to deal with the side effects of narcotic painkillers would be greater than the resultant increase in pain. After all, what's a bit more pain when on a very good day you don't drop below an 8 out of 10 on the pain scale? After more than six years of this my perception of pain has become rather...obfuscated?--at the very least it can only be evaluated on my own terms as I've long since lost any memory of what "pain free" feels like to compare my current status to.
However, it turns out that when pain reaches a certain intensity, a change in its magnitude, which I felt would be experienced as a quantitative increase (which wouldn't mean very much given a wholly relative pain scale, having lost all points of reference), instead caused a rather qualitative change, increasing my suffering far beyond what I expected.
One thing that I've learned is to differentiate between the concepts of pain and the perception of pain (or pain and suffering). My pain level has been unceasingly very severe for years but the deggree to which I've suffered has varied a great deal even when the pain levels have gone unchanged for some periods of time. While I haven't given up all hope of a solution to my persistent headaches, realistically I have no expectation that they will abate any time soon. It's fair to say that I have very little control of the pain itself (having tried every treatment available {though not every treatment that there is...a point I may get to later}). But through actions such as exercise, meditation, rest, activity, drug therapy, etc. I have significantly more control over my suffering, or how the pain affects me.
Thanks to the neurally inhibitory and dissociative effects of ketamine I was able to try to take control of my suffering after I was discharged from the hospital with significantly greater pain. Though I initially felt that the pain was wholly unbearable, I did find that moderate low-impact aerobic exercise could, at least temporarily, break up the almost petrified state that my brain was going into from the uncontrolled pain. The first week that I was out of the hospital I went to the gym every day, more out of necessity than commitment. I was able to cope initially because of the "reset" of sorts that the ketamine treatment gave my mind--a reset not of the pain but more of the trauma that my brain endures in the accumulation of nonstop pain over long periods of time. Unfortunately, in enduring very severe pain for more than a week after my hospitalization it all started stacking up again, reestablishing that sort of "second-order" suffering that develops from having suffered so long in the first place. I'm sure this is something that many of us have experienced and is, in my opinion, the essence of the problem of chronic pain.
So I really became overwhelmed and have been trying very hard to deal with it. Unfortunately the pain is so great that even when I can bring myself to endure the primary experience of it I find that my personality is all but absent. I disengage socially and rarely speak even when something crosses my mind that I would normally share. I knew that ceasing painkiller use would make things harder but I expected it to get slowly easier as I acclimated to the increase of a pain that was already very much there, and also regained between mental acuity. But, again, this hasn't been the case as the continuous suffering accumulates into a level of mental trauma greater than what I had experienced before the hospitalization. So I think I will probably start taking pain medication again, though hopefully at a lesser dosage and frequency. And I admit this with no shame--realistically it seems like the only rational choice at this time, as much as I wish that the circumstances that necessitate it were different. And I do have some interesting new ideas about
some new direction in my treatment.
Anyway, this has mostly been a mashup of describing the hospitalization as well as what 'm going through now, but I'd like to say a few things about
the ketamine treatment itself. First I want to say that I think that ketamine is very possibly the best treatment for severe intractable pain available. I say this even as one suffering a great deal now despite having had ketamine infusion twice in the last 13 months. When I went in last year for the first time my reaction to the treatment was regarded by my neurology team as rather strange--that I experienced no decrease in pain whatsoever but reported that it was the best treatment that I had been given for my chronic pain in six years. Now this is not looked at as abnormal. Research has begun to be published that suggests that ketamine actually is not often very good at treating pain but is an indispensable tool for pain
management.
It's primary use is still for the treatment of CRPS (
which, by the way, I believe works almost exactly the same way as new daily persistent headache does--if you're interested in learning more read up on "wind-up pain" or "central sensitization") but it has shown a great deal of promise for a wide array of other neurological disorders, notably in treating trauma patients. I credit this success, in many ways, to ketamine's dissociative properties. It has the effect of dissociating, or breaking up (so to speak), our conscious thought patterns, or our mindsets. I think it goes without saying how destructive our mindsets can become from the continued experience of severe pain (or other trauma). To look at this is a more scientific way, ketamine is a strong NMDA receptor antagonist. It blocks the excitatory neurotransmitter Glutamate which is released en mass in response to pain stimulation (nociception). Most daily preventative medications for headaches work, at least in part, by decreasing the activity of glutamate.
As some of you may know, ketamine therapy is actually carried about
in two very different protocols. The first is what was used for my ketamine infusion and the ketamine infusions of every other patient in the US who receives ketamine therapy. It is administered at a low dose (not to exceed 1mg/kg/hr) over a period of five days. Generally this type of ketamine therapy is helpful to patients but rarely, if ever, has any substantial long-term or curative effect. The other protocol is the administration of ketamine at anesthetic levels--levels high enough to induce coma. This much high dosing is closely monitored and the patient is kept in a coma state for, I believe, 7-10 days. It has been reported that nearly half of patients who undergo this more radical treatment experience FULL recovery and more or less all of the rest experience substantial long-term relief. This type of treatment is illegal in the US. Currently medically induced comas may last no longer than 3 days. The FDA will not consider approving ketamine induced coma due to (in their words) the absence of any double blind trials being published (yes, that does beg the question of what exactly could be used as a placebo for a coma). Also, it has been pointed out that the cost of operating centers to administer this type of therapy would be very very high. Given the influence of insurance company lobbying I do not doubt that these financial considerations are given equal weight to safety concerns. As it is, many of those who can afford it fly to Germany for this treatment, frequently at the advice of their American neurologists. However, with the cost exceeding the level of tens of thousands of dollars very few have the opportunity.
Well, I've said a lot and I'm sorry for the utter lack of organization in my post. There's a good deal more that I've learned about
the pathophysiology of chronic pain as well as potential treatments. If anyone wants to learn more, please let me know. But in the interest of keeping this post "readable", I'll leave it at that.
Ben