ADHD meds: adventures in Vyvanse, part one

So, I have been on 30mg Vyvanse for a whole (checks diary) four days. I was diagnosed with ADHD on Wednesday, and today is Saturday. Probably I should wait a bit longer before I deliver the truth bombs, since my brain’s response will adapt, but everyone is keen to know the deal, and I do have stuff to say already, so here goes (I can update as this changes).

Vyvanse is a slow-release version of dexedrine. It has a lysine molecule attached to it which apparently slows metabolism and delays the overall release and processing of the drug. Instead of getting a four hour effect and having to take three doses a day (which is what I would have to do on dexies), it’s supposed to last for 12 hours.

The actual studies report that it kicks in two hours after taking it and lasts for 12 hours, so there is a reported consistent effect from 2 to 14 hours after ingestion.

The downside (because I like to finish on a high note)

I metabolise things quickly. I always have. Painkillers and other drugs with a noticeable effect kick in sooner and taper off more quickly than expected. I get about two hours relief, max, from painkillers that are supposed to last for four hours. Alcohol hits me hard, but on the upside, I sober up very quickly (to the point that it confuses people who are expecting me to still be drunk). I wouldn’t test this by, say, trying to drive, but my impulse control and ability to make decisions after I’ve done this rapid sobering up trick are… pretty solid (as long as I haven’t completely destroyed myself, which I haven’t done in a very long time, since I decided it actually wasn’t fun; and last time I did, it was by accident! Long story involving my neighbour making me Long Island Iced Teas and having trouble with the measuring…).

So, what does this mean for Vyvanse?

It means it kicks in at about 90 minutes and it seems to drop off at about 9-10 hours after I take it. Which means I’m getting 7-8 hours of effect. Seems good, right? I mean, why complain?

Except that when it wears off, I drop into an anxious jittery mess. I get anxiety that lasts for about half an hour, and then after that I’m all twitchy and ADHD and can’t focus and Twitter all the time and what were you saying and brain fog and fuuuuuck…

So one of the things that I want from treatment is the ability to actually relax in my downtime: that is, to sit down, to read, to watch TV, to be present in the moment with friends, husband and self. I’m unable to relax when I’m being ADHD and it’s been a problem for a long time. The other problem is that most of the writing I do is done in the evening. That’s my writing time, my sit-in-the-snuggery-with-the-cats time. So I really, really want those extra four hours of Vyvanse effect.

What’s the solution? Well, it turns out this isn’t an uncommon problem, and some people only get four hours out of Vyvanse and crash MUCH harder than I do (so far; like I said it’s early days). I suspect (for reasons mentioned below) that my starting dose is too low, which would be quite common as well; but increasing the dose won’t increase the duration. I could split my dose throughout the day (they’re capsules, so it would involve dissolving them in water and leaving them in the fridge, which is hard if I’m at work and get home late). Or, if my dose went up, I could take two of these a day, which would be easier (although would require phone reminders – that’s okay, that’s already my life). Or there’s the possibility if an instant release (IR) booster, like an actual dex pill, to take in the afternoon. Apparently there are things I can do which might increase duration: eat high fat meals for example (HELLO KETO except I’m not keto at the moment because I ran out of spoons due to insane life, long story, and can’t get back on it until mid-May due to travel).

Obviously, I can’t really do any of these things without consulting my specialist, and the appointment isn’t for six weeks. I’m considering emailing her office with a short list of questions about what I might do in the meantime, but otherwise, I just have to tough it out and deal with the fact that life is going to be unpleasant at about 5-7pm (depending on when I take my meds).

The other downside there is that the Vyvanse wears off at roughly the same time that my body is about to call it quits. I have (suspected, probable) Ehlers Danlos Syndrome which includes (definite, absolute) hypermobility, which means that my muscles work twice as hard as everyone else’s do just to hold me up, so after a day of being me, I’m wrecked (not also: autonomic dysfunction, low blood pressure). Even with good sleep. Even with eating right. Those things help, but my body just… is done. My joints just can’t even. So around that time, having the Vyvanse wears off is kind of like being knocked over with a brick. I would prefer to have those things occur at different times.

The upside: this stuff is so fucking good

Here’s the positive stuff: the meds definitely work. I’m able to make decisions without panicking that I’m not making the absolute best decision and going over and over my choices (we’re talking “what to have at a café for lunch”). I’m able to be on time for things (well, I’ve done it once, but I’ve only tried once so far, so watch this space). I’m able to plan my tasks more effectively and accept that I can’t do everything because I’m more aware of time. I do still get stuck in loops with Twitter and so on due to indecision and executive dysfunction – which is why I think my dose is too low – but part of my brain is aware of it and it’s easier to break out of it.

Concentration

I read a paper yesterday, in the car (we’re on a road trip right now). I cheated a bit. I picked a paper on a topic that I’m very interested in, and that I don’t have any imposter syndrome or anxiety about (crinoid taxonomy. I’m very comfortable with crinoid taxonomy, it’s my jam). But even though there was a podcast playing in the background, and I occasionally got distracted, I was able to get through it (and as a bonus, found one of my papers cited at the end! Which was very nice and gave me quite a thrill). And I did have to reread some bits, and I did skip the species descriptions (although that’s my personal bugbear: I don’t feel there’s a point reading species descriptions unless I have specimens right in front of me for comparison. They are necessary but very boring). But I finished. And it made sense.

I even downloaded another paper that was referenced out of interest and I’m not terrified of trying to read it.

Now, I’ll be honest – and this is another reason I think my dose is too low – it was exhausting, and afterwards I did feel like my brain had been through a shredder, and I needed to close my eyes and not focus for a while.

But I did it.

All the FEELINGS

Emotional dysregulation is a very common part of ADHD (and ASD, incidentally). It means we basically don’t have the same brakes and filters that everyone else does when it comes to feelings. I can be crushed by really very minor setbacks and my whole day is ruined. Now, I’ve been aware of this problem since at least high school (although “Katie, you’re so sensitive” was the song of childhood so… hm), and I’ve been developing coping strategies – conscious, decisive strategies – since early uni. I have a lot of “calm down, it’s okay” in my head, a lot of “take a break, think of something else, remind yourself this isn’t a big deal” voices. There’s a lot of effort, actual tiring effort, that goes into presenting myself as a calm person who’s not upset by every tiny little thing.

Part of this was because I’d never get through a day if I kept thinking “I can’t believe I missed the tram, that’s so fucked up, I’m such a loser” before I even got to my chemistry prac (literally the day that I started consciously practicing this “mental redirection” stuff).

Another part is that if I actually lost my temper the way my brain wants me to? I’d have no friends. So there’s a lot of “[x] means well and is my friend and loves me and doesn’t mean to hurt me and doesn’t know that behaviour sets me off” and “[x] will see things that way because their life has been different to mine and their feelings are valid, it makes sense, don’t get angry”.

Now, these strategies don’t work for genuine panic attacks and flashbacks due to trauma and abuse, which I have, and it’s important to separate those things I can’t control from things I can mediate. But they’re super effective strategies for normal, day-to-day life.

Here’s the thing: they’re hard. They’re so deeply ingrained in me now that they’re almost instinctive. But they’re hard, and they’re tiring. I’m constantly talking myself down from an emotional cliff.

…which by the way is also exhausting because of my (suspected) autism situation, where emotions are difficult to access and you feel them before you even are aware of them and you can’t articulate them (and cards on the table, I’m fucking articulate). So I have to play this weird double bluff game where I have to manage feelings I’m not always aware of but I know something’s up.

And on Vyvanse, I don’t need them. I mean, I still do, but nowhere near as much. Nowhere near. And it is… so good, and so relaxing, to not be constantly calming myself from a state of intensity. I can just experience a setback or a disappointment and think “Ah well, bummer,” and move on without getting obsessive about it, or artificially forcing myself to move on by (sometimes) completely suppressing that feeling.

So. That’s a win.

Fine motor control

Something I learned from combing the primary research literature (I am what I am, dammit) is that ADHDers often have quite poor fine motor control. Dopamine is useful for motor control and we don’t have enough of it. I spend a lot of time getting very frustrated because I drop things and can’t do minor stuff like get things out of my bag without consciously thinking about how my fingers and arms should move, or stuff goes everywhere. It’s really frustrating. Confounding factor: ASD people often also have this problem, and Ehlers-Danlos makes proprioception (body awareness) really hard as well.

On Vyvanse, so far, my fine motor control is improved. I make a lot less typos when it’s in effect. That would be a measurable test. I can manipulate objects with greater ease. And, thanks to the emotional effect, when I do mess up, I don’t get nearly so frustrated.

Maybe I should take up knitting.

Less anxiety

So: as my specialist explained to me, anxiety makes ADHD worse, and ADHD makes anxiety worse, and the whole thing is a horrible feedback loop. One of the long term goals with the medication is to break that feedback loop and to ease some of that long term anxiety (the aspects of it that aren’t hard-wired or due to other causes, that is).

I have a lot of anxiety about getting things done, forgetting things, being on time, letting people down, etc. And on Vyvanse, I’m a lot calmer. I can focus. I’m clear-headed. That much-anticipated quiet in my head is really there. It’s not 100%. As I said, I think my dose is too low. I still get a lot of soap bubbles, and some of them pop before I can get to them, but I don’t feel the same urgency to get to all of them as quickly as possible.

I can manage my life and not freak out about how I’m failing to manage my life.

Conclusion

In conclusion: the meds are great. They help. They don’t make me high. They make me a lot more functional. But there are some problems: the crash is unpleasant, they don’t last long enough, and I think the dose is too low. Still, those problems can be resolved or mediated without too much trouble, and I’m optimistic.

Watch this space.

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ADHD and other letters

This is a long story, and some parts of it are really hard to write about. It’s got a pretty good ending (or beginning, strike up the cellos, etc.), so while that’s a spoiler it’s probably worth sticking through it for that. I try to stay factual, but it get personal. Maybe it’ll help other people have epiphanies, who knows?

It starts with some other letters: ASD.

A couple of years ago now, I tied together a bunch of scattered clues and, with a sinking feeling – and then a hopeful feeling – I began to piece together a story of self-diagnosis. I read widely. I tried to stay skeptical. But the pieces fit: the sensory bullshit, the executive dysfunction, the difficulty reading people and emoting, and a long, long list of other stuff which is beyond the scope of this post. It all landed in a giant messy heap that said “By the way, Kate, it’s possible you make your home on the autism spectrum.”

It was useful, and a weight off my shoulders, because now that I knew what the problem was, I could work around it instead of beating my head against a wall trying to be like everyone else and feeling like a horrible failure when I just… wasn’t. I wasn’t just going to grow out of social anxiety or my difficulty task-switching or my reactions to food textures or wool clothing or bright lights or loud noises, much in the same way that I wasn’t going to suddenly sprout wings and fly.

So I put together some strategies, strategies that would help me cope with what I now accepted as a physical reality rather than a personal failing. I did a bunch of research. And I felt at home with this. I didn’t feel the need to go any further with it.

I bounced off the idea that ASD and ADHD are often confused with one another, and also the fact that they’re frequently found together in the same person. Didn’t apply to me. I was a good student, after all. I studied hard. I have a PhD, fer cryin’ out loud. I followed the rules. ADHD didn’t apply to me.

(so… turns out there are some very common misconceptions about ADHD and I had them)

Meanwhile, I continued to suck at time management. To horrible, nauseating levels. I would make endless lists. I would back calculate from my time of arrival. I would allow an extra ten minute – fifteen minutes – half an hour – and still, I would be late for everything. I would consistently and forever fail to understand how long things take, even if they were things I did all the time. Every time I apologised for being late, I felt lower and lower. More and more hopeless. More and more disgusted with myself. Why can’t I get this one thing right? It’s not that I don’t care. I started to lose faith that it would ever get better. I started to feel that my apologies were worthless, because I couldn’t change this. I’ve never been late for a club dive, but that requires Herculean mental effort and it’s exhausting.

(side note: if you’re a person who thinks that people who are consistently late don’t care, please, knock that shit off. There are some pretty solid neurological reasons that people can try and try and try and still fail at that, and it doesn’t mean they’re blowing you off. I understand it’s frustrating. Waiting around is awful. Being made to feel like your time doesn’t matter is really, really awful. You absolutely get to decide if it’s a deal breaker. But just don’t think it’s because someone doesn’t care. Just because it’s easy for you doesn’t mean it’s easy for everyone else)

I would make these long to-do lists for my days at home and drive myself to exhaustion trying to get everything crossed off, and still feel at the end of the day that I hadn’t done enough. I would crash and just take a one hour break to do something that wasn’t work or an errand or a household task and…

…time…

time is unlimited and doesn’t pass if I’m not paying attention to it

in my mind it’s still the last time it was when I looked at the clock

if I don’t look at the clock it’s still five minutes ago

it doesn’t pass

oh shit

a whole bunch of it just passed while I wasn’t watching

while I was reading

while I was playing a game

while I was trying to relax and calm down

I don’t have enough of it, I can’t afford to have it just disappear like that.

And now I can’t relax, because time will disappear. I can’t trust it.

Slippery motherfucker.

I was reading a forum where this issue of being on time was discussed (actually, it was Captain Awkward), and a bunch of people piped up that yeah, that’s something that a lot of people with ADHD struggle with, and even setting a bunch of reminders doesn’t work (I set two reminders on my phone for every appointment).

Oh, I thought. That’s… interesting.

But no. Not me. That would just be an excuse. I have enough diagnoses, right? I have Crohn’s Disease and Ehler’s Danlos Syndrome (suspected), I’ve had endometriosis, I have major depressive disorder and seasonal affective disorder and I’m almost certainly autistic. I’m just looking for an excuse.

I can’t have ADHD.

But that’s… interesting.

Work days, days which were stressful due to commuting and the sheer panic of being around people all the time (because even when I like people, I’m still pretty sure I’m ASD), were kind of a relief. Because being at work was a break from my at-home list of do all the things right now as soon as you think of them because you’ll forget

you’ll forget

you’ve forgotten already

what

what was I thinking

just now, it was important, I know it

it’s gone

I will sit down on my bed in the morning, one shoe on my foot, glaring at nothing, waiting for that thought to come back, in case it’s like a cyclist in a velodrome and it’s going to be back on another circuit any minute now, when in reality thoughts are like soap bubbles and my brain is a giant foamy bathtub.

Sometimes they come back.

Mostly they just pop.

I started bullet journaling recently. I thought it might be a good way to get on top of my time management and my forgetting and all that jazz, especially as it’s recommended for ADHD people and I was beginning to suspect. The plan was that when I had a thought of something I needed to do or get on top of, I’d write it down.

I can’t describe the relief that I felt when I first started doing this. The relief that I’d written it down, and that all the things I wrote down were all in the same place, and I could find them again, and it was under control. The stress drained out of me.

But I learned something.

I learned that I think of things all the damn time. It never stops. My brain never shuts up. I reach for my bullet journal every five minutes until my daily to do list covers multiple pages and I’m desperately trying to make sure I get everything done because if I don’t I’ll fail again. Those soap bubbles just form and form and form and they don’t stop. They pop. Constantly.

It’s loud in here. I can’t think. I can’t sit still.

I have a lot of ideas. That’s great.

I can’t focus on any of them.

The lists help.

Then they overwhelm me.

I can – barely – watch a 22 minute show on Netflix. I can’t watch a 30 minute show made for Netflix that doesn’t need those eight minutes for ad breaks. I twitch. I check my phone. Constantly. I pause to see how much time is remaining. I get distracted. I check my phone again. Do I need to put the laundry away? Shit. What just happened on the show? I missed it.

I can’t watch movies, not by myself. I can’t watch TV shows longer than 20 minutes- not any more. It’s different if I have company, someone else to ground me. Sometimes I can do cross-stitch and that helps. Cross stitch can get me into a kind of pseudo hyperfocus. I can’t sit still.

I try. I used to be able to sit for one hour lectures. Mind you, I took a lot of notes. That kept me going. There was physical feedback and information and the rush of learning. That I could do. That I’m good at.

I’m really good at it, and being good at something is enough of a rush and reward to get me through it.

But I can’t get through a session in a conference. Shift. Move. Twitch. Fidget. My postural muscles suck, I’m hypermobile, but it’s not just that. My brain skims out. Wanders. I bring it back. I bring it back. I can’t focus. I take notes I know I’ll never read, just to try and keep my mind on track.

I can’t think.

I have to leave. Every couple of talks I just have to discreetly leave the room and walk around, sit down, because my brain has filled up with white noise and it has an almost physical weight and I’m exhausted from sitting still and focusing. I feel sick with it.

I can hyperfocus with writing. Sometimes. If it’s going well.

But more often: the slightest distraction and… it’s gone.

“I’m sorry, I missed that?”

I zone out in conversations all the time. In meetings. It’s normal for me. I’m constantly correcting, bringing my mind back into place, politely asking people to repeat themselves if I can get away with it, because everything they said just faded to white noise. Background to the noise in my head.

It’s not that I don’t care. It’s not that I’m not interested. I just get… distracted.

I’m a scientist. That’s my job. That’s my bread and butter. That’s what I do.

I can’t read a paper all the way through.

I haven’t read a paper all the way through in 12 years.

Do you know how humiliating that is to admit, for a working scientist?

The key issue is all the way through. I have strategies for coping, for making sure I get the relevant information, making sure I can still critically address the paper, but it’s difficult. It’s hard. It’s exhausting. I need to put my head down after a couple of pages. I feel literally nauseated. It’s like forcing my brain through a cheese grater. Exceptions are papers I review, because then I have a physical task: critique and write notes. But reading a paper just to absorb the information?

Colleagues send me papers to read, with cheery comments: “hey, this will be of interest to you!” and I just want to cry. Because I can’t. I can’t. I’ll sit down. I’ll get a cup of coffee, maybe a snack, and I’ll get comfy. Pick the right music, maybe that’s it. Maybe that’s what will make the difference. I had enough sleep last night. I can do this.

And I will try to force my brain into it.

The general low quality of scientific writing as a form of readable communication does not help. Well-written, eloquent work will be easier. But it’s still a slog. The fact that we have to write scientific papers as dispassionately as possible, and the fact that the methods section will always be dry because that is how it’s supposed to be and that’s a good thing and- I can’t read it.

And I can’t do it. My brain won’t sit. It will take in three sentences. GOSH THOSE WERE SOME SENTENCES. THAT WAS GOOD. LET’S GO DO SOMETHING ELSE. No, read the next sentence. WHAT WAS THAT FIRST SENTENCE AGAIN? I LIKED THAT ONE. LET’S READ THAT ONE AGAIN. No. Next sentence. LET’S SKIP TO THE RESULTS. DO WE EVEN HAVE TO DO THIS. YOU’RE OUT OF COFFEE. SHOULD YOU GET MORE COFFEE? DID YOU LOCK THE DOOR THIS MORNING? DID YOU REMEMBER TO ASK YOUR BOSS ABOUT THAT THING? HEY, YOU SHOULD MESSAGE YOUR FRIEND ABOUT LUNCH. NOW. BEFORE YOU FORGET.

WAIT.

YOU KNOW WHAT. I WANT TO KNOW HOW FITBITS HANDLE SLEEPWALKING. DOES IT KNOW YOU’RE ASLEEP?

WAIT.

WHAT WAS THAT FIRST SENTENCE AGAIN.

Let me tell you, I skim. I am pro at skimming. I’m very good at scanning paragraphs and picking up the words I need. The depth and the detail and the discourse? I miss those. I need conferences to get those.

And I keep sitting down with these papers. Maybe if I take notes. Or highlight things.

I can do this, I say, but I just. Can’t.

And I just want to throw up. Or cry. Or both. Because I’m not stupid, and I’m not lazy, and I’m good at this shit, but I can’t do it. And I feel both very stupid and very lazy.

And I go back to the drawing board and try to find another way.

Colleague on voyage: “I was up reading papers last night.”

Me: “ah, my sympathies.”

Colleague: “oh no, well, you know, reading papers can be fun though.”

I want to punch him.

Everyone on this voyage is working on their science. They’re reading papers and writing them. I feel like a fraud. I open up my paper draft, and I feel genuinely nauseated and I want to cry. Everyone else can do this. I’m smart. I have a PhD. Why can’t I do this?

Fuck this, I’ve got a few more episodes of The Flash to get through.

I can’t even read epic fantasy novels any more. The payoff is too slow. I can’t focus. This shit is getting worse, not better.

It turns out that’s a pattern. It turns out women with ADHD actually often hold it together pretty well – through school, sometimes through uni if they have a lot of structure – and then somewhere in their mid-20s or mid-30s, they crack. It falls apart. That’s when routine changes, when life gets less structured, and also when hormone levels change (that’s a factor). It’s not true for everyone, of course. Some get diagnosed early, in childhood. But mostly, in kids, people are still looking for a loud disruptive boy, and not a daydreaming girl with a wandering mind who – it turns out – can do very, very well at school without having to study, or concentrate, and so who slips under the radar.

No-one would think there’s anything going on there. She gets straight A+s, she behaves in class, she’s polite. Some social problems, but ah well, that happens, doesn’t it? Smart kids, and she’s a bit chubby and bossy, so she’ll have problems. But ADHD? ASD? No.

In her own way, she becomes invisible.

For a long time.

Until she’s 36.

ADHD is profoundly genetic. This does not surprise me in the least.

We tell stories in a very particular way in my family.

It gets convoluted, and dramatic, but it’s very entertaining. If you want an interesting, loud, overwhelming evening of entertainment, come to dinner with my brother, my father, and myself. You will not get a word in edgewise. You will hear some weird shit.

But I promise: you will not get bored.

I had my specialist appointment today. I was nervous about it. I’ve been anticipating and dreading it for months, because what if I don’t have ADHD, and I really am just lazy and don’t know how to focus? I’ve tried so many things, what can I possibly have missed, I try so fucking hard

I have ADHD. Yes. I really do. That’s why I keep trying and failing. I have Attention Deficit Hyperactivity Disorder and I don’t have enough dopamine in my brain and the whole system is just borked: poor executive function (ability to make decisions, organise, task switch), emotional dysregulation (I feel things super keenly and too much and I can’t watch sad movies or read sad books because it will destroy me and I’ll be miserable for days and it will actually affect my life, I am not joking or exaggerating), poor short-term memory, poor impulse control (BUY ALL THE THINGS), tendency to hyperactivity, and – as is in the name – difficulty focusing.

Specialist – very warm, approachable, super-competent – listened to me babble at full speed for 20 minutes (and if you don’t know me, my full speed babble is… amazing. It’s just a string of syllables but apparently it was coherent). She took notes. She asked questions. She gently brought me back on track when my mind wandered. She had me take a couple of questionnaires, even though she was fairly happy to diagnose me on my history, because my medical situation is complicated and there are some confounding factors.

I’m not sure if she diagnosed me on history or my 20 minutes of light-speed topic-jumping babble, to be honest, but no judgement if it was the latter.

And now I’m on medication.

And I’m not lazy. I’m not stupid. I have been trying. I don’t think meds are the be-all and end-all, or actually magic. I expect to have to still use coping strategies – but now I think they might actually work. I look forward to the possibility of watching a TV show by myself. Or sitting down to write and actually writing and not doing a hundred other things instead. Not reading papers, because that would be a miracle, although… a girl can dream.

Or maybe I could be on time for something. That’d be pretty sweet.

But what I want most of all is for my brain to shut up, because the noise is exhausting. I want to focus. I want to think.

In six weeks I’ll go see her again, and we’ll see how the meds are going, and then when the edge of it all is taken off, we’ll discuss other coping strategies, and talk about how to assess me for ASD now that the confounding factors of ADHD symptoms might be a bit less… confounding.

In the meantime, I feel vindicated, relieved, and embarrassed. I have a lot of labels now, and a lot of diagnoses, and it feels like a bit much to get my head around, but mostly what this means is I can try and cut myself some slack; because it turns out this shit isn’t my fault. I can relax a bit.

Well, I can try. We’ll see how we go.

And I know there are people out there who will think that taking meds is the “easy answer”. Maybe it is. Maybe there are other tactics I could use. But fucking hey: I feel like I’m fucking entitled to a few easy answers at this point.