Thursday, September 26, 2013

Return to the Chemistry Experiment

What is it like, this chemistry experiment, you ask.  Somebody did ask, honest.

Prozac Monologues strives to be journalism, not journaling.  I write for education (mine first, then yours), not for therapy.  So when the story turns to the Chemistry Experiment, a topic I write about so often, it gets its own label, I have tried to season my prose only lightly with my personal story.

But the Chemistry Experiment has been excruciatingly personal these last several weeks.  And nowadays, the personal story is one way that journalists frame their reporting.  So here goes.


The Chemistry Experiment

Psychiatrist: I get really good results from this medication.

Patient: What kind of results will I get?

Psychiatrist: We won't know until we try.

So we try.  We put chemicals into my body/test tube, and stir.  Then we pay attention.

Or, at least, I pay attention.  I never went off my meds because I missed my highs (ha!)  But I have done it because the people conducting the experiment were not paying attention. Eventually, I learned how to pay attention and record results myself.  Which is fine, until things go suddenly so wrong that the test tube is unable to recognize the signals and carry out the abort procedure when it becomes a really good idea to do so.

Starting Again

Anyone who has been at this for a while knows about weighing costs and benefits.  How much side effects do we have to put up with to get how much symptom relief?  It's a trade-off.  We pay at one end or the other for whatever DSM flavor has claimed us.  But to some extent, we choose our own price point.

Two months ago the doc said the goal is 100% symptom control and 0% side effects.  Sounds wonderful, doesn't it?  It's the one thing he said that gave me pause.  Psychiatrists say that sort of thing to patients all the time.  I have never, ever heard a patient say it.  Because we never, ever get it, 100% symptom control and 0% side effects, that is.  Only the innocents starting out even expect it.

I have been off the heavy duty psych meds for a couple years, just wasn't getting enough bang for the buck, costs and benefits-wise.  I wanted my life back, such as it was.  Like, I wanted to be out of bed for at least 14 hours a day; I wanted to drive; I wanted to find the ends of my sentences.  I might have been flexible about the driving thing.

So I have been making do with one PRN med that takes the edge off the anxiety and another for emergencies that keeps me from doing something stupid when the depression/agitation takes me to the danger zone, and mostly relying on every other recovery tool in the box besides medication.

But then I learned that a bipolar expert is just over the Cascades from me.  I got an appointment for a consultation.  And the expert said the reason I had such trouble with meds in the past is because they were always the wrong meds.

I couldn't argue.  It's not just that they didn't work.  They came from the wrong shelf.  And I always said I would take medication in a heartbeat if there were one that worked.  So put up or shut up.  I agreed to try one from the right shelf.  Away we go.

Terms of the Experiment

So I have some targets I want the med to address:
  • sleep
  • anxiety
  • mood stabilization.
I have some instructions:
  • start at 125 mg./day
  • titrate up another 125 mg., every 4-7 days
  • stop when a) I feel good, or b) I get ravenous (precursor to weight gain), or c) I hit 750 mg.
And I have my mood chart on which to record results.  The weakness in my method is that I had gotten lax, and don't have records leading up to the start, so I don't have my base line.  I never expected to walk away from this consultation with a scrip in hand.  But it is what it is, and I figure I can tell the difference the med is making as I titrate up.

Note that language: titrate.  Put on your lab coat.

Oh, yes, and some safety glasses for the issues.  I have issues.  Boy, do I have issues.  Good thing I have a therapist to go with the issues.

Results Come In

Now this is not my first rodeo.  I understand that psych meds suck, and they especially suck at first.  Some of the suckiness goes away or gets within tolerable limits, as the body adjusts to the weirdness that has been introduced into the system.  And what one deems tolerable will shift, like my attitude about not being able to drive, if the med actually starts to work.  I have to give this time, ride out a few bumps, problem solve to ease the pain.

Anxiety and Confounding Factors

Day 1 -- The first dose, 125 mg., my anxiety is going through the roof, and the roof's edge is calling to me.  See, the problem with replacing test tubes with human beings is -- you get all these confounding factors.

Am I anxious, because the action of putting the pill in my mouth turns the ignition switch of my personal time machine, taking me back to past experiments, with their delusional thinking, paranoia, helplessness, caretakers who are not taking care -- (Comorbid PTSD)? Or am I anxious because the med itself is making me anxious?  It is supposed to do the opposite, but I am no stranger to paradoxical effects.

How will you sort that one out? -- that's my therapist asking.  I decide, if the anxiety is caused by the act of taking the med, then it ought to fade, as I pull myself together.  If it is caused by the med itself, then it will get worse as I increase the dose.

There will be more confounding factors to come.

Meanwhile, I do start getting a consistent eight hours sleep each night.

Day 6 -- At 250 mg., I am more depressed and more anxious -- not what we want.  We have not hit our mood stabilization target. We are not in the ball park.  But at least we have not left the parking lot.  I am no worse than I was before I began as far as mood swings go.

Unfortunately, at this point I stop writing -- don't have the band width for it.  That's when I realize, we constructed this experiment the way pharmaceutical companies and the FDA do, with a list of symptoms to eliminate and a list of side effects to avoid.  But we have not articulated the goal -- a life worth living.

My goal is to write.  I can tolerate how I felt before starting the med.  I cannot tolerate not being able to write.

But once again, this is not my first rodeo.  Things may get better.  I give myself a pass on the first week's blog post.  I may as well, because I cannot bring myself to care.

Weight Gain and Confounding Factors

Oh, we have not yet begun the confounding factors.

I am supposed to lower my dose if I get ravenous.

Weight gain is not acceptable to me.  I don't know if the doc gave me instructions about weight gain because it is not acceptable to him either, or if it was a strategy to deal with my resistance to taking medication.  A number of his behaviors were designed to deal with resistance.  Mostly they worked (except for that 100% and 0% thing).  I did fill the scrip.  I am putting the pill in my mouth.

Okay, weight gain -- The thing is, mental illness takes 15-25 years off a person's expected life span, mostly because of metabolic issues caused by weight gain caused by medications and ignored by doctors.  Since heart attack is my family's favorite mode of exit, I am not willing to increase my already significant risk factors for heart disease by gaining weight.

On the other hand, sometimes my life feels like a life sentence.  Heart disease might give me fifteen years time off for bad behavior.  Hmm... More work for my therapist.

The doc assures me that weight does not creep up with this med.  It is preceded by a clear out-of-control appetite.  Two weeks into the med, I am up four pounds.  On the other hand, two pounds came before the med, while I was traveling.  On yet another hand, I usually gain while traveling and lose immediately upon returning home, which I didn't this time.  I just keep going up, a pound a week.

Is that feeling in my stomach a ravenous appetite?  I do feel hungry immediately after a meal -- what he warned me to watch for.  Is it nausea?  Maybe -- and maybe I am gaining because I eat a bowl of Cheerios in the middle of the night to settle my stomach.  Can I adjust my meals, eat more little meals, more protein at night to make this thing work?

Now that I am taking it, I really do want it to work.  So I push ahead.

Woozy

Day 13 -- 375 mg.  BOOM!

I already hit my sleep target at 125, surpassed it at 250 and was dragging through my days.  At 375, I am struggling out of bed at 9 (instead of 7) and not functioning until after lunch.  I stop driving -- tired, dizzy, confused.  My wife notices me grabbing kitchen counters for stability.

Well, the anxiety is gone.  Pretty much everything is gone under a 375 lb. weight.  I wonder if I will get to a maintenance dose in time to get the blood work done before my follow up appointment.

This One Could Kill You

Day 15 -- Off and on I am feeling sharp pains in my abdomen, first on the left, later and stronger on the right.  The doc warned, the one thing about this med that could kill me is pancreatitis.  The pharmacist backed him up, when she required a consult before she handed me the bag.  That sharp pain is my signal to call for help.

So I schedule a brother-in-law consult.  My brother-in-law had pancreatitis before, and what he describes is way beyond what I am experiencing.  So I don't call.  Again, I give it more time.  Maybe it's still the anxiety.  Maybe it's last night's fish and chips.  This experiment is conducted outside of lab conditions.  So it's hard to tell.

Besides, if I die suddenly in the middle of the night, I can quit the chemistry experiment.

Did I mention I have issues?

Sigh, the Runs

Day 19 -- Maybe that pain was my bowels sending up their first distress signal.  I have had the runs for four days now, even after overdosing on loperamide.  The runs are my body's favorite side effect, for three entirely different classes of medications, taken for different issues over the last several years.

With plummeting energy, laying around on the sofa all day, missing my birthday hike (did I mention I had planned to hike around Suttle Lake on my birthday -- but I couldn't, because I was woozy?)... I decide to back off the dose to 250 mg.

Suddenly, at 250 mg., I get two days when I wake up alert.  Maybe if the runs resolve, this is going to work, after all?  Hang in there.  I eat my yogurt every night.

Day 24 -- I count.  It's now ten days running.  My bowels are not adjusting.  They are daily more displeased.  As my bowels fall, so does my mood.  This is ridiculous.  In the past I have hung in for too long with meds that eventually I had to quit anyway, leaving me with the sense that I had not treated my body with kindness.  I am ready to bail.

I cut to 125 and leave a message for the doc -- couple more days, I'm through.  When he gets back to me after the weekend, he suggests I stick with it an additional four days, paying attention to any benefits I might be getting out of the lowest dose.

Results

Sure, why not.  Benefits... well, six days into the runs, I stopped gaining weight.  At thirteen, dehydrated, the scale headed back down.

How about my original targets?

Sleep -- Yup, it knocked me out, alright.  As long as I was on the med, the problem wasn't sleep, it was getting up!  The thing about psychotropic medications that help with sleep, whether a side effect or on purpose -- when you go off them, you have to learn how to sleep on your own again.  So now I have an old problem back with a vengeance.

Anxiety -- It was a full time job, but I reeled in the anxiety.  I decide my original anxiety was about taking the med, not caused by it. My later anxiety was about side effects. Without those -- I don't know what the outcome would have been.

Mood stabilization -- This med officially is a mood stabilizer.  Here is where we would expect the payoff.  Nope, that was pretty much a bust.  There were a few good days, when I thought it was going to work, when I gave myself permission to wonder what it would be like to live out from under the cloud(!)  But when I was empty, literally as well as figuratively, I nose-dived.  In any case, the goal was not good days.  It was stabilization.  Combine good days with nose dives -- that is de-stabilization.

Lots of maybes, mights and I don't know's here.  It is possible the med would have hit its mood stabilization target eventually.  It overshot on the sleep issue, but my body might have adjusted.  But side effects (the runs) raised the cost beyond the reach of yet potential benefits.

One plus -- My brain is stronger for all the cognitive therapy practice.  I haven't worked my brain so hard for a long time to keep myself afloat.  I did reps: Not my first rodeo.  I know this drill.  I can get back on track after the effects wear off.  I will feel miserable for a while, but I know how to drop the weight, sleep normally again.

Issues to the end -- when I was tapering off, I said to an old friend, I feel like, once again, I have betrayed my body.  He answered, Your body knows you are doing the best you can.

How much of my troubles were the nocebo effect?  [Nocebo is the opposite of placebo; it means when meds don't work because you don't expect them to work, or when side effects emerge because you do expect them.]  It doesn't matter.  I am doing the best I can.

I gave it my best shot.  -- See?  I'm still doing reps.

Learning from the Chemistry Experiment

So that is the Chemistry Experiment.  Stick a chemical in your mouth.  Pay attention to what happens next.

Why keep such excruciating detail?

As you may have surmised from this tale, psych meds suck.  The Chemistry Experiment is painful for the test tube, especially if there is no pay off, but even if you hit a bull's eye.  But timely and effective problem-solving can reduce the pain.

Monitoring results reveals patterns that suggest solutions.  The doc is not in a good position to discover patterns, since the doc interacts with the test tube 10 minutes, 30 tops at a time, with weeks' gap between appointments.  If the test tube is not keeping track, the doc is likely to receive less than helpful data, whatever strikes the test tube as the most compelling in that little sliver of time.

For example, those pains in my gut did not recur.  They were not pancreatitis.  If I had not kept track, if they happened the day before the appointment, precious minutes would have been spent speculating about a distraction, not on the real issues.

However, having kept track, and having experimented with diet changes, I could report that there was no dosage level at which the runs went away.  They kept getting worse, as long as I was taking any dose at all.  That was bad news -- I had to discontinue and cross another med off my list.  But at least I didn't waste time trying whatever intervention occurred to the doc in those 30 minutes, enduring that pain another few weeks.

Recording the information is an aid to memory, improving the quality of the data for both doc and test tube, and making those little med checks more efficient.  I kept referring to my mood chart to answer his questions.

Meanwhile, keeping track and devising ones own solutions gives the test tube a sense of control.  I am a lab rat.  But I will be a free range lab rat.

Recovering from Treatment

Today I am back to my normal, mild depression mixed with some good days.  As my sleep hygiene efforts start to pay off and my energy returns, I can do things that absorb me, take me out of myself, give me satisfaction.  I am singing now, and learning to play the piano.  I can go for hikes by myself again.  I am preparing my first sermon in over four years.  These activities really do help me manage my bipolar, and have never made me sick.

Medication is a powerful tool in the treatment of mental illness. Having faced that monster down in the deep, I would like that tool in my toolbox.  I imagine I will try something else some time later.  today my therapist had a new idea.

I am saving my safety lenses.

flair from facebook.com
photo of various pills used under Creative Commons license
photo of Angry Father by Akapl619, used under the Creative Commons license
painting of sea monster in public domain
cartoon of weightlifters in public domain
drawings of Alice in Wonderland in public domain

2 comments:

  1. Whoa....what a rough road! I am in awe of your wisdom and strength. Do you mind telling mw which medication this was?

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  2. Readers, Holly is a friend from school days, and I answered her privately. The post skips the name of the med because I want to focus on the process, though that will cost me some Google hits from people looking for a message board. Fill in your own med, your own side effects, your own doc...

    ReplyDelete