One pill makes you larger and one pill makes you small...

 When you're diagnosed with ADHD, one of the first words you'll come across is "medication".  

Back when I was a kid, there was a lot of talk of kids being "over-diagnosed" with ADHD and thus "over-medicated".  Your typical rambunctious boy, it was argued, would these days be slapped with the label of ADHD and doped into submission, rather than simply accepting him for who he is and teaching him vital life skills.  Both "South Park" and "The Simpsons" had episodes about this exact issue.  There was a big question about whether or not ADHD even existed, and if it did, whether or not it should be medicated.

Nowadays it's a general consensus that ADHD does indeed exist, and medication can make a huge difference to our lives, increasing focus, improving memory, and reducing impulsivity.  But it's still controversial.  The go-to drugs given to most people suffering from ADHD are stimulants, and those stimulants are very closely related to street drugs such as "speed" or methamphetamine.  And there is enormous potential for abuse.  

When I was diagnosed, like most people, my psychiatrist's first port of call was methylphenidate, more commonly called Ritalin.  It was...odd.  I remember saying that my brain felt like an over-excited horse being forcibly held to a walk.  Looking back, I suppose it was the first time I had any real tangible indication of how differently my brain worked, that almost physical sensation of my mind being slowed down.  

The Ritalin worked for me for a few weeks, but shortly thereafter I felt it was losing its effectiveness.  Since then I've been told my doctor should have been slowly titrating my dose up.  It's possible he did, honestly, and I don't remember it.  My memory, like that of many ADHD people, is unreliable.  It's possible as well that I was simply growing accustomed to the drug and noticing its effects less, but having done some research I've found that Ritalin is at its most potent therapeutically in the short term.  Whatever the case, I was taken off the Ritalin and placed on a different stimulant: lisdexamfetamine, sometimes sold under the name Elvanse or Vyvanse.  That is where my nightmare started.

At the lowest dose, I could feel the benefits, but they weren't strong enough to make much differense in my life.  Gradually my dose was raised to the maximum of 70 mg.  

And I began to go mad.

Stimulants have an odd effect on the ADHD mind and body.  First of all, they markedly increase focus, attention span, and working memory.  And I did see all of these benefits upon taking Elvanse.  But what I also felt was extreme anxiety, exhaustion, irritability, and a constant sense of...is terror too strong a word?  I don't think that it is.  As a stimulant, Elvanse gives you a massive jolt of energy shortly upon taking it.  Paired with my natural anxiety and lack of tolerance for any sort of pressure, however, that energy did not translate into motivation or ability to do more...it became fear.

In addition, one of the things doctors won't tell you is that most people with ADHD find stimulants have what is called a paradoxical effect; they do the opposite of what they should.  In other words, stimulants make you sleepy.  But they still have the same physical effects that they would on neurotypical people.  By mid-morning I would be desperate for a nap, but going back to bed resulted in nothing more than me staring at the ceiling listening to my heart thunder in my chest.

I stopped eating.  One of the most common side effects is a loss of appetite (which is why it is so commonly used to treat binge eating disorder), so I expected that I wouldn't be hungry during the day.  I did not expect to find even the thought of food actively repulsive until the pills wore off.  I lost over 40 pounds.  This was a very good thing in the long run for me (I was obese, verging on morbidly so), but it likely was not the healthiest way I could have accomplished it.  There was a constant sense of panic, nibbling at me like a rat gnawing the numb extremities of a leper.  The slightest thing could set me off.  I nearly ran out into the snow naked because my husband and I had an argument.  The thought of cooking dinner made me burst into tears, even though all I had to do was grill some sausages.  The sword of Damocles dangled over me on a fraying thread.  Life had become fear.  And yet I was also afraid to stop taking the medication, because I didn't want to disappoint my husband and family.  My ADHD made life infinitely harder for them, and while this situation wasn't ideal, my symptoms were still mitigated.  

I lived like this for over a year.

I finally broke in the car, when we were driving home.  I'd been skipping doses (one of the few plus sides of stimulants; most people don't have withdrawal symptoms) in a desperate effort to keep myself sane, and yes, hiding the fact from my husband, which still shames me deeply today.  But on this day, I broke.  I started crying, saying I couldn't stand how these pills made me feel, I felt like I was losing my mind.  And bless my good man and his good good heart, he held me and said we would get me help.

This is the part of the story that really makes me angry, because this is where the system fails so many people like me.  I was able to stop taking the Elvanse immediately (remember, no withdrawal), but this left me back at square one; ADHD and unmedicated.  We contacted the specialist hospital where I'd seen the psychiatrist who prescribed the Elvanse, but their waiting list was astronomical.  For a simple medication review I was looking at waiting for up to six months.  So my choice was half a year unmedicated or half a year going crazy.  This is what happens when your public health care system is catastrophically underfunded.

I was one of the lucky ones.  I had a very kind mother-in-law who agreed to pay the 500 (!?) pound fee to get me to see a private psychiatrist, a specialist in adult ADHD.  And I was lucky in another way; the first drug he prescribed, atomoxetine (Strattera), a non-stimulant medication known for being particularly successful for people who had both ADHD and autism (ie: me), proved to be the right medication for me. 

But not right away.

Atomoxetine is a wonderful drug.  It works as both an ADHD medication and a mild anti-depressant, which meant I could ditch the Duloxetine that wasn't working particularly well for me anymore.  It's non-stimulant, so no anxiety or heart palpitations.  It has no potential for abuse.  It raises the dopamine levels in my brain, making me happier and calmer.  It increases my focus and attention span without making me crazy.  I could even drink while taking it.

It also takes eight weeks to start working properly.

The psychiatrist warned me it would take this long.  He also warned me the side effects would be hard to deal with while my body adjusted, especially since I was also coming off of anti-depressants.  I mentally prepared myself.  But nothing really could prepare me for the eight weeks of utter hell that followed.  

The most common side effects of atomoxetine are all different words for "tired" (lethargy, somnolence, fatigue).  Others include depression and mood swings.  For eight weeks I sat on the couch, or I lay in my bed, and I slept and I cried.  I wondered why I was torturing myself.  I wondered why all the medications that were meant to make me feel better kept making me feel worse.  I wondered if I would ever have energy again.  I wondered if I would ever get my life back.

Eight weeks passed.  The side effects eased.  Another way in which I was fortunate; I was able to endure those side effects for those eight horrific weeks, and they did ease.  And I felt better.  So much better.  My mind was clear...not as clear as it had been on the Elvanse, mind, but that all-consuming, crushing terror was gone, and that, for me, was a more than fair exchange. 

I wonder what would have happened to me if I had been medicated as a child.  Would I have coped better?  Would I have found it made my struggles any easier?  Would my life now be better, or even different?

I wonder what would have happened had I decided not to take any medication at all, and just stayed on my anti-depressants.  Would I ever have reached the somewhat stable, even place I am now?

Do I really want to know the answers to those questions?  Does it matter?  

The Beginning

 So.

Where do I begin this?

I was always aware of the possibility that I might be autistic, at least from the time I learned what autism was.  I was awkward, with my peers, always bonding more quickly and tightly with my teachers.  But with other children I found it impossible to master or judge social norms.  My interests were eccentric, esoteric, and frequently morbid.  I seemed to lack the instinct that told other children and adults what actions or words were or were not appropriate.  It was all something of a puzzle to me.  So when I reached my late teens at the very end of the 20th century and autism was becoming the de rigeur childhood disorder, it struck something of a chord with me.  I even told my friends that, had I been born twenty years later, I would like have been labelled autistic.  

But ADHD?

Ah, that was a different animal altogether.  ADHD meant the little boy in the classroom who couldn't sit still, the noisy and disruptive child, the one who couldn't even focus long enough to read a single sentence.  That was a label that seemed to fit my loud, gregarious, outgoing brother far better than it did myself.  I was a voracious reader, able to finish an entire novel within a day.  I could lose myself for hours in projects that interested me.  I was effortlessly got good grades in most subjects in school.  If anything, those around me said that I was too quiet, focused as I was on my books or my writing.  I remember sitting for half an hour at a zoo, waiting for a turtle to move off a rock.  Of course I was a dreamy kid.  I would make careless mistakes in my school assignments, sometimes to the point that I'd get a failing grade.  I would sail through subjects I was interested in, but struggled with those I disliked.  But that was just because I didn't apply myself.  I'd rather daydream through the class than listen to the teacher.  But ADHD?  Ludicrous.

The early 2010s were a bad time for us, both my husband and myself.  I went through a very traumatic event that sent me into a severe depressive episode, and I was eventually put on anti-depressants.  I lost several jobs.  I had a severe health scare and was hospitalised for about a week.  We moved from Canada to the UK.  My husband's health, mental and physical, began to decline.  And I was finding it increasingly difficult to function.

I was forgetting things.  My vocabulary, always expansive, was declining.  The car door would be left open after we came home, the keys dangling.  I would lose items I had been using less than a minute before.  Knowledge that it seemed I'd had near to all my life all but vanished from my brain.  I would lose my train of thought mid-conversations, forget promises minutes after making them.  There was a brief period where I considered some form of very early onset dementia.  My mind, my cognition, my knowledge...it was crumbling, the pieces scattering, dissolving like sugar in water, like pollen in a breeze.  I was losing myself.

It was my husband who said it.  "I think you should be tested for ADHD."

Really?  Me?

Even at the time, I found the idea rather laughable.  Even then, I knew ADHD was a lifelong disorder, and all of this had only happened in the past few years.

Right?

We were fortunate.  There was a temporary clinic doing consults in our town, featuring psychiatrists who specialised in both ADHD and autism.  My husband secured an appointment for me, and I received what seemed like reams of forms and questionnaires to fill out.  And I remember the growing sense of disquiet I felt as I read through them:

How often do you have trouble wrapping up the final details of a project, once the challenging parts have been done?

How often do you have problems remembering appointments or obligations?

When you’re in a conversation, how often do you find yourself finishing the sentences of the people you are talking to, before they can finish them themselves?

When you have a task that requires a lot of thought, how often do you avoid or delay getting started?

How often do you have difficulty unwinding and relaxing when you have time to yourself?

The interview was more of the same.  Pieces of my life, issues I had always dealt with.  This is normal, it happens to everyone, I just have to push through.

And here I was, being told that it does not happen to everyone.

A childhood survey was sent to my mother.  Her responses were yet more confirmations.  I had been the stereotypical "Little Professor" so beloved of Hans Asperger.  I would throw tantrums if a single stuffed animal was missing from my crib, and would count them every night.  I flapped my hands to show excitement or eagerness.  I would much rather sit and discuss science and books with adults than I would run and play with other kids.  I would become fixated on projects or subjects and it was impossible to tear me away from them.  It all came together.

And so, at the age of thirty-five, I found myself diagnosed with both autism and ADHD.  

This blog is my attempt to process that.