3 years ago today: Subanesthetic Ketamine Infusion #2

originally published 3/22/2011 -- republished to honor fred


I'm pretty blue, pretty exhausted.  Can't think of a reason why yesterday's treatment should be behind either of those states, but heck... who knows?

They upped the dose to 90 mg and infused it in about 2.5 hours.  It was not pleasant but I apparently did a good job hiding that from Fred.  The nurse somehow knew I wasn't having the time of my life, and gave me a pep talk at discharge about how finding the right dose takes time and then several treatments at that dose, or higher.  Monique, her name was Monique.

Without saying much, she said a lot.  Like how this may be pissing into the wind because I am starting so long after onset.  Nine years.  Nine years.  Nine years of this.

She wouldn't use the port (that's right -- after all we went through to get it in before the second infusion -- the doctor having said he would refuse to treat me if I showed up without one...) because it was so new, the site very... raw.  It's swollen, bruised, and just not healed at the "edges."  I could see Fred eating his outrage before bending to his book.

Instead of sitting by my side, he sat in the wheelchair at the foot of the guerny, so as to stay out of the way of the nurse and tech, who do vital signs frequently -- like every 15 minutes.  He was beautiful to behold, at least in my tripping mind -- standing out against the bleak fluorescence of the hallway, a silhouette I've come to love, a faithfulness I surely do not merit.

I remember crying. My legs spasming, relentless.  The i.v. tubing, the blood pressure cuff, the oxygen monitor --each thing assumed terrible proportions just by tapping against my skin, each tap scathingly painful. I remember thinking that so long as I didn't open my eyes, I'd be fine.  That's probably why Fred thought all was well, thought I was sleeping through it.  Not so.  Not even close.

I asked for my purse there toward the end.  I had wanted to take a clip of the statue in front of the hospital.  Instead, while completely out of my mind on ketamine, I took a video of the ceiling in my cubicle, the curtains surrounding my cubicle, the empty hall near my cubicle, and...

...the most comforting of comforts, perched in the wheelchair there at the end of everything, my sentinel, my guard -- the best argument, the best reason I know for opening the eyes...

Next week, an even higher dose.  Then, the following Monday, an assessment and decisions.



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From the Journal of Pain

The Specificity and Mechanisms of Hemilateral Sensory Disturbances in Complex Regional Pain Syndrome

Lone Knudsen , Philip M. Finch , Peter D. Drummond
Murdoch University, Perth Pain Management Centre, Perth, Western Australia

The Journal of Pain
Volume 12, Issue 9 , Pages 985-990, September 2011

ABSTRACT:
Hyperalgesia often extends from the affected limb to the ipsilateral forehead in patients with complex regional pain syndrome (CRPS). To investigate whether this is more common in CRPS than other chronic pain conditions, pressure-pain thresholds and sharpness to a firm bristle were assessed on each side of the forehead, at the pain site, and at an equivalent site on the contralateral side in 32 patients with chronic pain other than CRPS (neuropathic or nociceptive limb pain, radicular pain with referral to a lower limb or postherpetic neuralgia), and in 34 patients with CRPS. Ipsilateral forehead hyperalgesia to pressure pain was detected in 59% of CRPS patients compared with only 13% of patients with other forms of chronic pain. Immersion of the CRPS-affected limb in painfully cold water increased forehead sensitivity to pressure, especially ipsilaterally, whereas painful stimulation of the healthy limb reduced forehead sensitivity to pressure pain (albeit less efficiently than in healthy controls). In addition, auditory discomfort and increases in pain in the CRPS-affected limb were greater after acoustic startle to the ear on the affected than unaffected side. These findings indicate that generalized and hemilateral pain control mechanisms are disrupted in CRPS, and that multisensory integrative processes may be compromised.

PERSPECTIVE:  The findings suggest that hemilateral hyperalgesia is specific to CRPS, which could be diagnostically important. Disruptions in pain-control mechanisms were associated with the development of hyperalgesia at sites remote from the CRPS limb. Addressing these mechanisms could potentially deter widespread hyperalgesia in CRPS.

REFERENCES

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Earlier this year, in the fourth issue of Volume 12, Knudson and Drummond published this prefatory study investigating hemilateral mechanisms in pain modulation:

Cutaneous limb inflammation produces analgesia to pressure pain in the ipsilateral forehead of healthy volunteers
Knudsen L, Drummond PD.
School of Psychology, Murdoch University, Perth, Western Australia. Lone.Knudsen1@post.au.dk

Abstract
To investigate the pain-modulatory effects of a local inflammatory stimulus on pain elsewhere in the body, capsaicin was applied topically to the forearm of 14 healthy female volunteers. Pressure-pain thresholds and sensitivity to sharpness were assessed on each side of the forehead twice per day during 48 hours of capsaicin treatment, and in the treated and contralateral forearm before and at the end of treatment. Heat was applied to the treated area to rekindle pain at times of forehead assessment. Hyperalgesia to sharpness, but not pressure pain, developed in the treated area whereas sensations remained stable in the contralateral forearm. Sharpness ratings decreased bilaterally in the forehead after 6 hours of treatment, and ipsilateral analgesia to pressure pain developed in the forehead when the capsaicin site was heated after 48 hours of treatment. These findings suggest that pain modulation involves unilateral regulatory mechanisms in addition to local and generalized pain control. The dissociated changes to sharpness and pressure pain indicate distinct cutaneous and deep central pain pathways. PERSPECTIVE: The findings lend support to an increasing body of research which demonstrates that pain modulation involves hemilateral mechanisms in addition to local and generalized controls. Elucidation of mechanisms that modulate ipsilateral pain processing may help to clarify the pathophysiology of complex regional pain syndrome, which is characterized by hemilateral hyperalgesia.
Click HERE for References.

Honey, Catching Flies

The short version:  My hands may be a little bit less painful but not remarkably so, and not so clearly as a result of the third ketamine treatment (@115 mg) that I'm willing to sing hosanna in attribution, in "agreeably positive connotation."

The longer short version:  This "subanesthetic" experience was unpleasant.  The only redeeming moments came in conversations I may (or may not) have had with Fred, again The Sentinel at the foot of the bed.  I confirmed with him today that we had a lightening-fast, telegraphic conversation about Stéphane Grappelli and Django Reinhardt.*  He guessed that I was speaking of Reinhardt by my mumbling something about "stride guitar" -- which, of course, is not the preferred terminology.  [That would be "parallel harmony."]
He laughed today at my experience under ketamine -- me high as a kite, inventing guitar terminology from barely understood piano language, and him, so correctly discerning, so remarkably inferring that we made some serious, actual conversational headway about European jazz in the 1930s.

Of course, in the very next instant -- an instant in K-time being anywhere from a nanosecond to two hours in length -- though, in width, it's longer -- anyway, in that next instant, I was perplexed by the screw-top to a Diet Coke.

I did not sleep and pray that next time I do, that next time being iin two weeks, as I begin another cycle of three infusions, the dosages going ever higher until I find "my" dose -- the least effective dose.  Hmm. The lowest dose that is effective.

I cannot stop my body from... doing things.  I found it incredibly helpful to remove each extremity, as much as was possible while wired up and attached to monitors and pumps, from any extraneous touch.  I held my arms carefully in the air, my fingers configured into what must have looked like a tantric claw in my effort to escape those currents of air that only I could feel, and *did* feel, as pain.  Worse, though, are cords, wires, plugs, tubing... dear God, if doctors and nurses honestly understand this, why do they not know that the wire from, say, the pulse-ox thingy attached to a finger becomes an instrument of torture in a person with allodynia?

Also... lanyards holding hospital ID badges, and stethoscopes hanging around *your* neck that hit *my* leg when *you* attempt to adjust a blood pressure cuff on my *left* upper arm by leaning across the bed from the *right* side...

Yeah, I know, I am done with the *x* effect.  Sorry!

Everyone, once again, was remarkably proficient and kind.  The promises of relief are now being tempered with words of vague doubt, with caveats, emptor and otherwise.  My case is "severe."  My case is "rare."

I listen to the woman on my left, in Bed Five.  She does not know why she is there.  She does not know what drug she is about to receive, and even when they tell her, she does not know.  I listen to her being asked to sign an informed consent form.

I listen to the man on my right, in Bed Seven.  He is an old pro and does little beyond cracking wise and snoring.  The doctor stops by to see him and jokingly rips him a new one for having gone to the emergency room for pain meds.  Fred rolls his eyes.  I roll mine.

I have "a moment" when the same doctor visits me and says my informed consent form is now "out of date," and would I please sign a new one.  I tell him I've never signed one before and he briefly loses the capacity to speak.

It's true.  The doctor who interviewed me in the clinic deferred that bit of paperwork, claiming he wanted it done "at the last minute," when they were sure they could get a line in (plus other bits of verbal melodrama, including blithe references to my particular "risks").

I signed it.

The rest of my hallucinatory experience was a kaleidoscope of sepia (yes, I saw in sepia, sometimes without opening my eyes), being trapped in monolithic ice bergs (a recurring nightmare), and hilarity that I wish I could have shared with Fred -- or even the Lady in Bed Five.

Because her whimpering broke my heart, over and over again.

I started crying and I remember an aide repeatedly asking "What's wrong, honey?"
[As I think my hands were extended in the air like spastic crabs and my feet were twitching to some bluegrass that only I could hear, I'm pretty sure she was worried...]
But instead of explaining how the Lady in Bed Five, who didn't know what was happening to her, was breaking my heart, I kept saying:

"I hurt."

Not exactly a news flash.

So the Lady in Bed Five was up and out of there a good twenty minutes before I regaled Fred with stories of how far away the floor was as he valiantly tried to load me in the wheelchair so we could beat rush hour traffic (yes, we have rush hour in Tête de Hergé -- we are just rushing toward something different, differently).

One regains normalcy very quickly -- within minutes of turning off the drug, actually.  Physically, there are a few problems, at least for me -- headache, nausea, dizziness -- but nothing to a magnitude that merits much complaint.

I am always hungry, in spite of the nausea.  And, as Fred rushes me a little, I have ended up in dire need of a restroom once we hit the highway, where there is, alas, no restroom.  Then I get a wee bit crabby.

Yes, so it is fine, afterwards.  You can, I believe, choose to remember everything that happened, or you can forget it.  Your choice, really.

The bottom line to everything.

My difficult times come in the evening, when I realize that my pain is no better, and is even sometimes worse, by virtue of what I put my body through.  And the day after, I am so exhausted that I do little beyond sleep.

Why am I doing this again?
Because there is nothing else.

Next week, I see the doctor and dread it.  He is something of a cult figure there.  Let's just say, when other patients blog about their treatments at this place, you can read their bated breath at his mention.   He smiled.  He didn't smile.  He was in a good mood, a terrible mood, an indiscernible mood.  I could give a royal shit... I want to know my magic number.  I want him to crank up that damned dose, give me some of this famous pain relief. 

Or maybe I'll stroke ego, as needed.  Honey, catching flies.

[Oh, the port?  Still unusable!  It boggles my mind the number of people who kindly pulled together on my behalf so this stupid port could be installed in my chest, "immediately" -- just so Dr. CultPersonality might be appeased.  The infection is better, but the rate of healing seems to be a tad slow.]

I'm sorry for being Depressed instead of Grateful, Bitchy instead of Hopeful.  I vacillate.  Grateful and Hopeful don't inspire many blog posts but I assure you that they are among my favorite emotional dwarfs.

* tip of the hat to Tully