Taking the A-Train, Part II (I Think)

This is a follow up post to Part I.  But I repeat some of that post here.  So maybe forget Part I.  But there is new stuff here so this is really Part 1.5. (Shut up and tell the story already!) If I “shut up,” though, I can’t technically tell the— (Really? This is how you talk to people?)

Okay then.

Aong the myriad changes to my life this summer, I began taking a new drug: Adderall.

After visiting a new ADHD specialist, I started on Adderall XR 20 once a day.  After a few days, the plan was to taper in Wellbutrin as well, after I described my depression as “severe” (with accompanying documentation)  The first day I took the Adderall, I felt relaxed and clear.  I took it in the morning and did my usual mental check.  How do I feel about finances?  Job? Mortality?  All topics returned positive thoughts.  It was a Saturday, and my wife and I had a good long talk about difficult topics: the finances, aging parents, our kids’ autism, our younger son’s cancer, etc.  I felt unburdened; I could send my thoughts anywhere without the automatic anxious responses. I could see my way to fixing many problems that have been ongoing, even those that I have always had trouble with since leaving home for college about a bazillion years ago (okay, it was 1989).  Those things being finances and getting things done in general.

But I cautioned myself.  Being on Adderall was a new project.  It was fun and untainted and full of possibility and lacking any failure suitcases.  After a second day of feeling good and getting some things done, I took a risk and had an antihistamine.  I have seasonal allergies, but I find that taking any kind of medicine for them gives me bad mood side effects (in that I seem to hate everyone and want to crawl under the bed) so I endure the allergies rather than experience those side effects.

English: Adderall

I slept well that night and started the Wellbutrin the next day. I felt confident about the anti-depressant because I had taken it years before and it had worked adequately. The idea of the new stimulant together with the antidepressant seemed like a potent combination to battle my sitting-around-ness.

However, something in that mix did not sit well with my brain.  My wife and I ended up in a big fight about nothing and I ended up taking a long walk around town to cool off. My wife called a friend over to stay with the kids and went looking for me in the car because I seemed too unpredictable.  I was sure it was the antihistamine and took another Wellbutrin the next day.

I didn’t have another tantrum, but I ended up with the same problem when I started Wellbutrin years ago: insomnia.  I wasn’t willing to wait it out this time, though, and felt like the depression had lifted with the Adderall anyway, so I chucked the Wellbutrin idea.

For the first two weeks, it felt like the positive change I was hoping for was just around the corner.  I saw clearly how to fix broken things in my life, and the steps were attainable.  There were so many of them, though, that I had made little actual progress.  That, and there is always the backdrop of my son’s cancer to consider.

I started to notice the first side effect of the Adderall: jaw tension. Adderall cuts me off from certain body signals. I can have a bad night’s sleep and still function okay and not have the crushing sense of fatigue that I’ve always felt. I am also less hungry.  Instead of stress affecting my whole being, stress seems only to affect my mouth.  My lips get tight and I have the urge to clamp my front teeth together.  From doing yoga and practicing mindfulness, I know I typically carry anxious tension in my body, but my normal jaw clenching is my back teeth.

tiny mouth

tiny mouth

On Adderall, when I start getting “tiny mouth,” I have to think to figure out what’s going on with my body.  Oh yeah, haven’t eaten in six hours. Or only got four hours of sleep last night.  The jaw tension also happens when the slope turns and the stimulant starts to wane. Normally hunger and fatigue would be right there without my having to think about them.

The Adderall effect feels different from the Ritalin.  On Ritalin, I’d upswing (which I hesitate to call a “high,” because that suggests a hopped-up feeling) for an hour or two.  I’d feel energized and calm and, on good days, have a sense of well being.  Then it would drop off and I’d feel like my baseline anxious mess of a self.  And then take the next pill.  I’d take as many as five a day and be up and down that roller coaster.

If you’re a coffee drinker, my Ritalin experience was like having that first good cup of coffee after you wake up and then within two hours going right back to just having got out of bed and everything sucks feeling. And doing that several times a day.

At the end of the day I’d feel exhausted from all the yo-yo feelings, and my depression would creep in there and make me feel hopeless.  God forbid I’d wake up in the middle of the night.  I would be so far away from Ritalin at that point that I would feel like I was dying. Some nights I was sure that I had completely stopped breathing in my sleep and only through some miracle had woken myself up and started breathing again.  Try going back to sleep with that thought in your head.

I had tried to remedy the roller coaster feeling with Concerta.  The timed release is supposed to give you a more steady feeling.  On straight Ritalin, I took 40 to 50 mg a day.  On Concerta I was up to 54 mg a day without the positive effect.  Also, with the Concerta, I had no options after it wore off. It was impossible to work in the evening.

English: Kirnu, a steel roller coaster in Linn...

The next option was to boost the Concerta, but I couldn’t understand why 54 mg of Ritalin inside the mechanism of Concerta did not work as well as 40 or even 30 mg of plain Ritalin.  My doctor was also concerned about my blood pressure which was testing at borderline high.  More Concerta could increase my blood pressure.

I now know that my family doctor was the wrong person to manage my ADHD meds.  The new doctor, the ADHD specialist, said several things about why my treatment wasn’t working.

  • First, some people respond more to the slope of the medicine rather than the level.  Concerta has a more gentle slope, so it’s not uncommon to need more of that than straight Ritalin to get the same effect. And plain Ritalin has a vicious down slope.
  • Second, if I was taking time release pills, I needed to have a “booster dose” of non-time-release stimulant on hand if I needed to work late.
  • Third, the way my family doctor measured my blood pressure was all wrong. I’d barely get into the office and after the nurse would ask me a stream of stress-inducing questions (when was your last physical [25 years ago] did you have your flu shot [no] why not [um . . .]). Then he or she would take my blood pressure while I sat uncomfortably on the edge of an exam table.

My new specialist waits until we’ve been talking awhile and lets me sit in a comfortable chair the whole time.  If I test high, he moves my arm to a more relaxed position, lets me breathe a couple times and then remeasures.

He said the other method virtually guarantees a wrong reading.  I bought a home blood pressure kit and thought it didn’t work because the readings were so different from in the family doctor’s office. (My other doctor was aware of this “lab coat syndrome,” but his solution was to get it monitored somewhere else on my own. To quote Bugs Bunny “He don’t know me very well, do he?”)

The upshot of all this was that I had plenty of room to go upwards on the Ritalin/Concerta route if I wanted to.  I was ready to be done with Ritalin, though, and he thought the slope of Adderall would work better for me anyway.

Adderall XR felt very good, but left me without much benefit after 4:00 p.m.  He told me to call if I needed a booster dose, so I did and left a message.

If you don’t know, ADHD stimulants are controlled substances because people abuse them.  My personal and unscientific opinion is that if Ritalin and Adderall were naturally occurring in coffee beans, they would be a regular part of our society, and if caffeine were only synthetic, it would be a controlled substance. I had plenty of friends who abused caffeine in school; No-Doz and Jolt were the study aids in my day.  Plenty of people are addicted to caffeine and use it daily as a “crutch.” Also I can’t make out why alcohol and tobacco are legal and marijuana is not. (Climbs down off soap box.)

Because stimulants are controlled, they are less convenient.  They can’t be called in, no refills are allowed, and there’s a limit to how many you can get at one time.  I have to physically take a paper prescription to the pharmacy and often have to show a driver’s license. I worried about how this might be a problem with my new specialist being an hour’s drive away.

I called and left a message and didn’t hear back and was feeling worried that maybe this was not the best place for me to be going after all.  I was thrilled to be proven wrong when a new prescription sheet arrived by mail within three days.  And it had a neon green sticky note attached with a reminder of my next appointment!  The significance of this cannot be overstated: not only are sticky notes important to my life, but neon colors are essential; pale yellow ones just don’t cut it.  This practice knows how to work with ADHD people.

Overall, the feeling of Adderall is more steady.  It is indeed a long slope and does not have that horrible drop off.  I do have the occasional what are you doing anxious thought at night, but without all that inconvenient existential dread.  I feel almost like a normal person sometimes.

On the downside, I am more blunt in my speech and say things that I intend to be funny that come out as mean.  I forget to eat sometimes and I eat less overall, but I can afford to miss a meal or two. (Dear Taco Bell: Fourthmeal?  I scoff at your paltry little number!)  I have to be careful not to take a booster dose too late or have too much caffeine or I have trouble sleeping. There is a slight decline in sexual response.  And the weird mouth tension thing.

But overall I felt much more positive and focused and less anxious and avoidant.  Until the end of my summer got messy.  But that’s for Part III.  Or maybe Part 2.25.  Can you do decimals in Roman numerals?

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The Cancer Conversation

Nice Reception people at DICE in Stockholm

Hello.  How may I inadvertently devastate you today?

There’s no easy way to tell someone your seven year old boy has cancer.  It’s true that having a son with cancer is the worst thing I’ve ever had to endure.  I’ve had several experiences of feeling like my world has been suddenly restructured, and this has been the biggest. But it’s also true that, all things considered, his treatment is going pretty well. He has to go through a lot, and I feel bad for this interruption of his childhood, but I feel pretty positive about the outcome.  His cancer went into remission early on and hasn’t shown any sign of coming back; we’re dealing more with controlling the side effects of the chemotherapy. In short, this all sucks, but we’re used to it.

But having the cancer conversation is hard. Casual conversation can be a minefield.  A simple “How was your summer?” and I think do you really want to know?

I had one such conversation the other day.  I had to reschedule my doctor’s appointment because my son’s chemotherapy session got moved.  I’ve switched to Adderall recently for my ADHD, and I have less of a filter and things come flying out of my mouth.  The receptionist asked me “what are good times and days for you?”

I didn’t know how much to explain.  I’m on family leave right now, so I’m not working.  But my son’s treatment varies.  I ended up saying, “I’m pretty flexible.”  Then, in my filter-challenged state, I added, “My son’s chemotherapy got moved, that’s why I had to change the appointment.”  Shit.

Not that I don’t want to talk about it, but I don’t want to devastate someone in a casual conversation.  Which I just did.

She said, “Oh, that’s terrible!  When was he diagnosed?  I’m so sorry to hear that.” And so on.  Which are all sensitive and appropriate responses.  I mean, someone could say, “At least you’re saving money on haircuts!”

But I ended up, as I often do, consoling the other person.  “He’s responding very well, and he’s doing fine right now.”

The cancer thing slipped out not just because I had the Adderall talkiness going (which is why I could make a phone call in the first place) but also that I always feel the need to justify myself, even when the other person doesn’t care.  It took me a long time to realize that if I forget to pay a credit card bill or something and I call up the company, the person who answers the phone doesn’t feel personally offended that I didn’t pay the bill, and probably would be more offended to listen to my litany of excuses.

But I still feel like if I have to move an appointment, even for a justifiable reason, that I have to make that reason known because otherwise someone will think badly of me.  If I drill down far enough, I think I explain excuses to show that I am a good person because I often feel I am not.  Through years of coming up short and having no real excuse (that I understood) I perfected the art of excuse making.  Having a child with cancer is the ultimate excuse card.  I regret when I use it that way.  But of my many personality quirks, a big one is that it is deeply uncomfortable to have someone think poorly of me.  I don’t take criticism well (ask my wife) and put off things that involve facing criticism (ask my publication record) or apologizing for my faults. In fact, the thing that angers me the most is unfair criticism because, goddammit, there are plenty of justifiable things to criticize me for!

Ahem.

Anyway, the conversations I’ve had have actually gone pretty well.  People have been remarkably sensitive and generous.  The only insensitivities have been the non-conversations, the people who pretend not to see me in the grocery store because they know and don’t want to get all serious life-and-death-y in the middle of picking out some apples.  Or the parents and kids at school who stare. My son seems to have no self-consciousness in that regard; he doesn’t want anything to do with a hat. For me, the best thing to do in that situation is to just be routine.  Yep, picking up my son at school, same as you, boring old routine.

It also gets a little weird at the local hospital.  We have a setup where if Alec just needs a blood test, we don’t have to drive all the way down to the clinic for that and can do it at the hospital down the street.  There’s no oncology clinic at our local hospital, so there are no bald children running around everywhere like in our usual setting.  Lots of people stare with pity in their eyes.  By contrast, the clinic is one of the best places to hang out because, while there are some kids suffering through bad times there, there are also lots of bald kids just hanging out doing normal kid stuff, and you can just chat with parents without it being a minefield.

The best group (besides people in the oncology clinic) has been my poetry writing group. Everyone’s been through hard times and we just address it in our work and our conversation.  There’s a sort of directness there that makes it easy.  We’re not all that concerned with politeness, though everyone there is kind.  It just goes with the nature of the work.

So if you see me, you can have the conversation with me. Like I said, we’re used to it.  There’s no avoiding the cancer in our house when we have to give him medicine daily and take him in to the clinic at least once a week. It’s our new normal.

Taking the A Train, Part I

Two months since my last post, whaaaat?

Summer time is always busy, but geez. Being Cancer Dad will sap your time.  At the moment, I’m staying in the hospital with my son (we’re on day 5 now) so I’ve got to write or risk climbing the walls.

On the AD(H)D front, I went to see an ADHD specialist about six weeks ago.  He’s a physician who specializes in ADHD treatment.  I had a recommendation from a friend about a year ago to see this guy, but, ahem, ADHD.

I went to see him on a Thursday morning his office is in East Grand Rapids, a tony part of town (there’s a yacht club, for Pete’s sake!).   EGR is about an hour from my house, and I had taught a class the night before in Grand Rapids and decided to stay over with my brother who lives downtown GR.  I did not sleep well, unfortunately, and was quite tired that morning.

I found my way to the Sundance Grill for breakfast, had some fabulous breakfast tacos, but felt weird dining alone at a place with table service. I kept eavesdropping on all the business meetings going on all around me.  The best conversation was at the next table; a business man from Ecuador was being entertained by a local guy.  At first, I thought the local guy was being kind of rude, all he had to go on was stereotypes.   You like soccer down there, right?  But it turned out Mr. Ecuadorian returned those stereotypes right back. You all play baseball up here, yes? Mr. Grand Rapids said he actually didn’t like baseball all that much.

I got to Gaslight Village early, found the doctor’s office, then hit the Starbucks down the street to wait. My nerves were getting the better of me.  As I said, EGR is a tony part of town, and I was surrounded by very successful looking people in sailing, tennis, or yoga outfits, with the occasional hipster thrown in for seasoning.  I’m more at home in the university crowd with a bit of earthiness thrown in by going to my local Biggby’s in a college town, where someone wearing Carhartts might have just arrived from a construction site or an art history class (or both).  In all honesty, the pending appointment probably kicked up my hyperawareness a notch; my first meeting with a psychologist many years ago I started to question the choice of magazines and muzak in the waiting room.

I forced myself to wait long enough not to arrive too early, and then walked into the door of the doctor’s second-floor office at five minutes before my appointment.  The office was empty, not even a receptionist.  Knowing that this doctor himself has ADHD, I wondered if he forgot my appointment.

Instead, he appeared at the door and said “You’re early!  Remarkable!”  I guess not too many of us ADHDer’s show up on time.

I took a seat and he got ready for me.  I went in a few minutes later and we started the consultation.  I had very thorough testing before, so he didn’t see the need to re-test me, and instead we talked about why I had come.

I talked about being on Ritalin and that it was sort-of working sometimes.  I got about two hours of benefit from each 10mg pill and then felt terrible when it wore off.  I had filled out extensive paperwork ahead of time with medical history and self-reporting of symptoms and we went over that. (Another sign that they were used to dealing with ADHDer’s: the staff would not schedule an appointment for me until after I had filled out and returned the paperwork.)  I also talked about my son having cancer and my needing to have more executive function so as to be more reliable and available to support him and my family.

We talked about my issues, such as not being able to get things done on time, not being able to stop doing things that I get involved in, my unreliable performance, etc.  I also talked about how I couldn’t understand why Concerta didn’t work for me.  On straight Ritalin, about 40mg a day seemed right (four 10mg pills) but the constant roller coaster was exhausting.  I felt constantly fatigued and downright hopeless most of the time.  On Concerta, I never got the full feeling of benefit even though I was taking 54mg (Concerta is Ritalin with a time-release mechanism).  And I had been working with my GP who basically let me decide what to try (“sounds like the wrong person is driving that bus,” he said).

The doctor had the simple answer to this confusing problem: “Some people respond more to the slope than the level.”  Ritalin has a sharp up and down level in the bloodstream.  The dose of Concerta I took had had a higher overall level, but a relatively weak up slope.

Oh.

We talked through various other things and then he said I had sat long enough for my blood pressure to calm down.  My blood pressure always measures as borderline, but I was just the high end of normal, even though I had been nervous.  “Perfectly normal for a stressed-out dad.” At my GP’s office, they take my BP as soon as I get there, so I always measured higher than when I measured at home.  He also took my weight and height and, demonstrating his ADHD, forgot what my weight was in the time it took to walk over to his computer to record it.

He went through a lot of PowerPoint slides on his computer, showing me the different slopes of different drugs and talking about brain scan studies.  He was careful to say that the brain scan stuff is easy to oversimplify and overdetermine, but (putting it simply and deterministic) my brain is inefficient because it tries to use emotional motivation for almost everything instead of more logical motivation when it is appropriate. (And that everyone is always a mix of emotional and logical motivation.)

That trend in my brain is both inefficient and exhausting.  It means I have to be “in the mood” for everything, even routine things that should not have an emotional investment, and that I spend my life trying to generate mood and feelings to motivate my work. I felt that was an apt description of what I feel going on in my head.  I told him that when I need to write, one trick I use is to Google Image search for writers, writing desks, writer’s studio, etc. Looking at those pictures gets me in the mood to do the work a lot of the time. He thought it was a great example of using creativity to work the problem.  One of the biggest problems I have is switching gears.

So I left with a prescription for Adderall XR and Wellbutrin. He had noted I was reporting depression symptoms and asked me to rate my depression on a scale of 1 to 10. My answer was 8.5, hence the Wellbutrin.  I was to start the Adderall first for four days, then start on a low dose of Wellbutrin.

I also had an appointment in a few weeks and a fat bill I had to pay up front.  This office does not bill insurance.  That’s something that made me put off getting my first appointment, until I read this in Jennifer Koretsky’s Odd One Out:

In the United States, most insurance companies reimburse health care providers so little that they are forced to see 4–5 patients an hour just to make a living. This is unfortunate. And it’s particularly dangerous when a healthcare provider who sees you for 10 minutes a visit is your psychiatrist, or other doctor prescribing your ADD medication! I always recommend that my clients see a psychiatrist for their ADD medication. And, due to the current state of the U.S. health insurance industry, it’s not uncommon for a psychiatrist to stop taking insurance once they have established a practice.

While this doctor is not a psychiatrist, the insurance bit seems to apply.  I have good insurance, so it will be paid for, but I have bad follow-through and may not get around to submitting my claims.

Next installment: All Aboard!

You must take the "A" Train ...

You must take the “A” Train … (Photo credit: keithcarver)