ADHD science ramble – a comment response
So if you know me at all, you know I have ADHD and also a neuroscience degree. Meaning sometimes I ramble a lot about the science behind ADHD and ADHD meds. Generally, people appreciate it at best, or ignore it at worst – but apparently not on reddit! So, I'm coming home – forgive me for straying, Tumblr, please give me back my belief in people's ability to understand nuance.
The comment below was in response to a post asking about ADHD medication, including concerns about stimulants and addiction, and the question of "will I quit these meds or is this a life-long thing". They also mentioned "rejection sensitive dysphoria" (which is not a medical term!) and asked for other people's insights on any of these things. I tried to give that. The original post is now suddenly deleted, and the comment was invisible even before then for whatever reason (I won't speculate whether it was censored by the mods or not, it doesn't matter.)
But since those are all pretty general topics and this was a lot of effort to write, I'm re-posting it here in the hopes someone will benefit from it – it may just read a bit odd at times because it addresses the OP of that post. So if ADHD medication, treatment approaches, stigma, or emotional dysregulation are at all relevant or interesting to you, give it a glance. There's a TL:DR at the bottom as well.
If Tumblr could stop bitching at me about the formatting that'd be great. Please ignore potential oddities with the list levels.
COMMENT RESPONSE IN VERBATIM
OKAY SO, buckle in my friend because you have activated my ADHD research deep dive mode. For the record and some context as to where I got all this; I have a BSc in Psychology, and did a research masters in cognitive and clinical neuroscience. Throughout both degree programs, I've written every single paper I could choose the topic for about some aspect of ADHD. (I do not have a license for psychotherapy yet, but I am getting one.) I also just have ADHD myself.
What I’m trying to say is: I know way too much about ADHD and now I must tell you about it because what else am I supposed to do with it — ANYWAY … I should probably structure this somehow so it’s less overwhelming.
We’ll try this:
Medication
Strattera/Atomoxetine (ATX); how it works, why it may or may not be working for you
Stimulants; how it works, evidence regarding the risk of dependency and abuse, connections to other substance use (since you mentioned nicotine)
Long-term treatment plans; factors to consider / questions for you to evaluate for yourself
RSD — probably a rant, first; why buzzwords are counterproductive even if the experience is 100% valid
Emotional dysregulation; research again, also potentially about meds
rejection sensitivity slkjdsjfs it escalated, help
Community and peer support
Yes? Yes. Feel free to skip any parts that are too sciency, if that doesn’t interest you!
First of all, congratulations on your diagnosis! You’ve already made one of the hardest steps. But let’s get into it, shall we?
ADHD Medication
Non-stimulants / Atomoxetine (ATX)
I must say, I am quite surprised that you were prescribed ATX as your first option, given that stimulants are very firmly established as first-line treatment.
Regardless, a couple of facts about it:
ATX is a selective noradrenaline (NA) reuptake inhibitor, which also affects dopamine (DA) levels, specifically in the prefrontal cortex (PFC) because— well because brain chemistry. (I’m trying very hard to keep this simple, can you tell?) Basically, the idea is to regulate DA levels through an indirect mechanism via NA. And that works pretty well, generally. ATX is effective for approximately 50-60% of people, and the effects reach moderate strength.
Now you said that you don’t really notice any effect; that can have several possible reasons:
It just doesn’t work for you; 50-60% of people show a response, sure — but the other 40-50% do not! Unfortunately it is possible that you simply are part of those 40-50% non-responders.
The exact mechanisms of that are still unclear, but there are many factors that might influence someone’s drug response, including individual differences in metabolism, genetic factors etc. --- we’re still researching that
ATX, unlike stimulants, doesn’t necessarily have immediate effects. Full therapeutic effects are generally not evaluated until at least 2-3 weeks after starting it. That also means that the effects can develop slowly, which can make them harder to notice because it’s a somewhat gradual change.
On top of that, if your doctor is even the slightest shred of competent (which I hope), they’ll probably have started at a fairly low dose, meaning that;
you might just not feel it yet, but the effect may still emerge
you might need a higher dose; if that’s the case, this increase is generally done step-wise and quite slowly, to monitor the effects (and side-effects) properly. I suggest asking your doctors about what kind of trajectory they have in mind, so you can decide whether that suits you.
You mentioned mood swings; definitely mention that to your doctor! Psychological side-effects of ATX should be closely monitored
Note that this is especially important if someone has (potentially undiagnosed) comorbid disorders. I don’t know whether that’s the case for you, but better to be aware either way.
All that said, I also take ATX and I must say that on its own its effects are barely noticeable for me. It’s only because I know that my symptoms can be worse that I even consider it effective. I am an unusual case, though, regarding med-response etc. and I take ATX in combination with Elvanse (Lisdexamfetamine; LDX).
Which I guess brings us to stimulants. You say you’re reluctant out of fear to form a dependency, if I understand correctly. Well, the research is quite interesting in that regard — but let’s cover the basics first.
Stimulants
Stimulants, i.e., various types of amphetamines (AMP) and methylphenidates (MPH), are the standard first-line treatment for ADHD. Both AMP- and MPH-class drugs essentially increase the efficiency of the PFC —same as ATX — but where ATX only directly targets NA, AMP and MPH inhibit the reuptake of DA itself as well as NA reuptake. This direct effect on DA levels is basically (very basic; oversimplified even) what makes them stimulants. It is also likely the root for your concerns about dependence risks, because DA is involved in our reward-system in the brain — i.e. the thing that tells you “i want more of this”.
So, yeah, these concerns are not unfounded, HOWEVER
It is important to remember/note that a lot of the public narrative around ADHD and ADHD medication is heavily distorted by stigma. The number of people who worry about stimulants being addictive is leagues away from the actual prevalence of stimulant abuse/dependence.
This also kinda ties into your question about whether you will stop taking meds at some point or not; the idea that treatment must be temporary roots in the stigmatisation of mental health treatment.
I’m not saying that life-long medication treatment is a delight and a joy, but I also don’t think that it is the ultimate evil it’s sometimes made out to be. –– EXAMPLE: Think of a diabetic; they will need insulin for the rest of their life, but in their case nobody would ever suggest that them taking it is somehow a bad thing.
Mental health in general is unfortunately still heavily stigmatised, and that also impacts the narrative around treatment options, including medication. And more often than not, public beliefs about psychiatric conditions are downright and blatantly wrong.
In this particular case, actual research indicates that stimulant treatment actually decreases the risk for substance abuse in ADHDers. (Generally, adequate ADHD treatment reduces risks for all sorts of unpleasant things, like comorbid disorders, social isolation, divorce, accidents — I could go on. Not the point.)
The point is that overall, from a research perspective, the risk of drug dependence due to stimulant medication is quite low. Hell, literally everyone I know who takes ADHD meds will go “shit I forgot my meds” at least every other month or so.
Of course that doesn’t mean that we can all just pop stims however we like without a care in the world. As with any other medication, monitoring effects and side-effects together with a doctor is key.
With all that said, there is good reason why stimulants are first-line treatment for ADHD: 65-80% of people show a treatment response, and for a lot of people who don’t initially experience an effect, switching to another type of stimulant will often do the trick (total response rates of ~90%). Besides the fact that they work for more people, they also generally work better than non-stimulants, meaning that the symptom improvements are stronger for stimulants.
Does this mean you should just get over yourself and go for stimulants because they’re clearly superior? Of course not.
Medication response is ultimately a very individual thing; it is basically impossible to know how you’ll react to any given medication before you try it. So in the end, it really comes down to what you want. It’s your decision, based on your priorities and values.
The same goes for your question of “will I take these meds forever” — that’s up to you!
Generally speaking, ADHD doesn’t go away. It is not something you grow out of any more than you can grow a second brain to replace the one you have. And our brains have ADHD. So, symptom-wise, we will always experience ADHD to some degree at least.
Of course, there are plenty of other treatment approaches such as CBT and literal mountains of helpful strategies to learn about and use. And that’s wonderful! Still, therapy alone is generally considered less effective than meds, but it does help. The best treatment approaches are multimodal, i.e. a combination of pharmacological treatment and behavioural interventions. Aka we take meds and go to therapy. Amazing.
So let’s say you’ve taken meds for a while, you’ve gone to therapy, you’ve learnt all the strategies — you decide to quit the meds. What happens?
Well first of all, nobody can know that beforehand, so keep in mind that these are hypothetical assumptions based on scenarios that research described as likely
Anyway, you quit whatever meds that ended up working for you. Ideally, you do that slowly so you don’t have any withdrawal issues, but eventually you’re off the meds. As a result, your brain isn’t getting that neurotransmitter boost anymore that the meds created (though some research shows that some benefits might persist, yay!), meaning that cognitive impairments are stronger again.
Does this mean all your symptoms come back? Well, yes and no. On a basic brain level, impairments return at least in part, but the strategies you learnt in therapy might still help you cope with those impairments better than you used to before.
So you might be overall more functional, thanks to those strategies, yes.
But strategies will not fix your brain chemistry, and if there’s no dopamine there’s no dopamine, and suddenly you spent all day in bed. Or you’re staring at your work open in front of you feeling like there’s a thick panel of glass between you and your screen/keyboard and you just cannot make yourself type. These things won’t go away, and strategies will not always do the trick
Personally, I dread the idea of living my life entirely off meds. My main hobby is writing, which is nearly impossible without my meds — and even if I had a less challenging hobby; I want to do things in life, not waste my time trying to get myself to brush my teeth. But, again, that is a very personal decision that you ultimately have to make for yourself.
Still, here are a few things to consider that might help you evaluate your options:
Need — what are your primary needs? Which symptoms are impacting you most? (Yes I’m getting to the RSD sfksjhgj)
Want — what are things you want beyond the most important needs? Where do your priorities lie?
Benefit — what benefit are you getting from [medication X]? How much positive effect does it have on your symptoms? On your life as a whole?
Need-benefit — do the benefits fulfil your essential needs? —> if not, that’s probably not the right med for you
Want-benefit — do the benefits fulfil your wants beyond the essentials?
Cost — what costs is [medication X] causing you? Do you have side-effects, if so what are they, how bad, how frequent?
Cost-benefit — do the benefits outweigh the costs, on a somewhat objective level? (effects vs side-effects)
Cost-benefit-want — Are the benefits worth the costs, also taking your individual values, concerns and goals into account?
This last one can get quite complicated, I’ll admit, but in the end I feel like this one is what tips the scale for a lot of people.
You could have the most amazing improvements, if you suffer side effects that keep you from something that is important to you, it’s probably not worth it in the end.
Vice versa, in my case, if it means I can write, I will accept that I’ll feel incredibly nauseated on some days for like 1-3 hours. It all comes down to individual choices in the end.
-deep breath-
So, that was a lot, whops. So much, that I should actually go and work, so I’ll try to keep the RSD thing short. Conveniently, the AutoMod already summed up the most important bits:
RSD is not a recognised medical term
Instead of RSD, it is better to use concepts and terminology with solidly established definitions such as emotional dysregulation and rejection sensitivity to talk about the experiences people tend to label RSD
This is particularly important when consulting mental health professionals; well established concepts enable them to assess your symptoms and needs better than vague, ill-defined buzzwords. I have had people tell me they were going to switch to another doctor because theirs wasn’t familiar with RSD --- that is an issue!
Buzzwords like that tend to hinder treatment progress, because they are too vague to be properly informative. Most people have a very specific conceptual definition of RSD --- namely the one that describes their own symptoms best.
That renders it basically useless as a communicative device. Doctors cannot mind-read; you are doing yourself a favour if your communication (including terminology) is as clear as possible.
Obviously nobody expects you to know specialised medical terms --- just try to avoid buzzwords; of any kind! RSD is just a very very popular one and therefore warrants repeated clarification.
Now, just cause it’s not A Thing(tm), doesn’t mean it’s not a problem. And yes, the experience of rejection sensitivity in ADHD is valid and should not be dismissed!
Emotional dysregulation is actually one of the most prevalent and most impacting symptoms of ADHD, but because it isn’t part of the diagnostic criteria, a lot of people aren’t even aware of how much ADHD impacts emotions — and how much that impacts life for ADHDers. Emotional dysregulation leads to all sorts of other problems, like social isolation or comborbid mood disorders like depression or bipolar. So, clearly, it’s something should be addressed when it comes to treatment.
And would you look at that, they did! Yay!
Research shows that stimulants are effective for reducing symptoms of emotional dysregulation; as mentioned earlier, ideally you combine that with therapy.
Especially for emotional dysregulation, therapy — not just strategies, therapy — can be very beneficial, because emotions are hard. A lot of ADHDers, especially those that only get their diagnosis in adulthood, develop suboptimal coping mechanisms throughout their life that are very hard to dismantle without help. But resolving those patterns often makes an immense impact on the general quality of life.
Conclusion: Get a good therapist. It’s worth it. (Good = someone you trust and click with, you have to be comfortable.)
Now, one last thing (almost done I promise), because you said you don’t really have anyone to talk to about this:
I strongly encourage you to actively seek out ADHD communities in a format that lends itself to connecting with people on a personal level.
So, quick story time:
Back in 2018, I (by complete coincidence) stumbled over a video of a TEDxTalk about ADHD on Patreon – who even browses Patreon?! Anyway, I watched it. Cried. A lot. Backed that Patreon immediately, before even looking at the actual YouTube channel it was for. The Patreon came with Discord rewards — I had never heard of Discord but there’s nothing like ADHD impulsivity, so I made a Discord account and joined that server.
Literally my whole life has changed since then. My perspective on ADHD has changed so so much simply through seeing other people having the same struggles, and yet they were still unique. And it was a wild ride. I look at some of the beliefs I used to have and am baffled at myself. But that’s not the main point, though knowledge always does help. No, the main point isn’t another strategy or lifehack.
The main point are friends. True, actual friends who accept you, but also understand you.
When I joined that server, I very quickly met a lot of people. It was wonderful to suddenly be in a space where people related to my experiences that had previously always singled me out as weird or rude or incompetent or whatever. And all those people were lovely, but they’re not the friends I mean; most of them I am not in touch with anymore.
I mean the select few. They are what made the biggest difference for me. I met one of my top two best friends like 2 months after joining the server, when we both became moderators. We later did community management together for over a year, until I moved on to other things — they are still Community Manager there! I flew to the other side of the planet for their wedding. We spend hours on video chat sometimes, both just working and hanging out because we like each other’s company (and it helps us focus). I can tell them anything, even if I hate what I did or didn’t do or say or think.
Those friends.
And I don’t know you, obviously, so maybe you already have that friend, in which case I’m very happy for you. But judging by your statement that you have nobody to talk to—
I’m not saying that joining an ADHD community will magically drop a best friend for you out of the sky, but it’s honestly not a bad start. Simply gaining the peer support of people who understand and relate to your experiences is worth it.
Okay, phew. Now I’m done.
For your convenience;
TL;DR
non-stimulants might still take effect or you might need a different dose
stimulants are heavily stigmatised and the actual risk for substance dependence is quite low if the treatment is properly monitored by a medical professional
ADHD doesn’t go away; we will always have ADHD brains and there will always be issues that cannot be solved with strategies
It’s up to you to decide whether you want to take medication for it, and whether you want to take them long-term or not. I personally am fairly certain that I will continue to take these meds as long as I can. Even though there are downsides, the benefits are more than worth it for me.
Emotions are hard, everyone should go to therapy.
Make ADHD friends! (I personally really like Discord communities; I can recommend the HowToADHD community — that’s the server I mentioned earlier — but it’s unfortunately behind a (very low) paywall. If you don’t know that YouTube channel, I’d also recommend checking out Jess’s videos.)
But back to the point: Friends. Whichever platform you are comfortable with – try connecting with people beyond surface level conversations in public comments/threads/channels. Slide into those DMs!
And that’s all. That was way too long and I apologise. I hope any of it was helpful and understandable, I know I can get a bit sciency sometimes. If anything is unclear just ask.
Good luck with your journey! It might be hard in the beginning, but it gets easier with time, I promise.
END VERBATIM
I hope anyone finds this useful, if only for validation. Shit's hard, but we'll all be fine, together.
734 notes
·
View notes
Cookie Run AU Ideas #8: Timeless Kingdom
what if Pure Vanilla Cookie, instead of being amnesiac outside with Black Raisin, was instead trapped in the Vanilla Castle time loop? But because of the Light of Truth, he's aware of it? he's been stuck there for...hundreds of years, watching his people die over and over again nothing ever changes no matter what he does and then finally, Gingerbrave shows up. I mean, PV may be nice but there are only so many times he can hear the same monologue before he gets reaaaally sick of it gonna join GC on the hate train and he physically isn't able to do anything "out of script". Every time he tries, he sort of 'loses control of his body', since it's a memory time loop you can't just change a memory and since he's a part of it, it'll force him to go along with it. To play his role. Gingerbrave and his friends probably wouldn't even realise he's not a memory at first, that the Pure Vanilla is the real one.
And an extra I wrote for the AU >:3
Pure Vanilla Cookie awoke with a start, his eyes snapping open to the familiar sight of his bed’s golden canopy. His head throbbed, and his mind felt muddled, a fog of pain and confusion clouding his thoughts. He struggled to sit up, the effort sending sharp jolts of agony through his body. As he gathered his bearings, fragments of memories began to resurface—the battle against Dark Enchantress Cookie, the ruins of his castle, and the faces of his friends, Golden Cheese Cookie, Dark Cacao Cookie, Hollyberry Cookie, and White Lily Cookie.
They had arrived to aid him, late, their expressions grim and determined. By then, he had already spent hours running through the chaos, trying desperately to heal his people. But no matter how hard he tried, the cake monsters kept coming, relentless and unyielding. He remembered the wounds they all bore. The exhaustion that clung to their bones as they fought to protect their home, their kingdom. With his magic reserves depleted, there had been a point where he had started reaching into the depths of his being, drawing upon his very essence—his life powder and soul to fuel his spells.
He remembered the final confrontation against her, he had used Dark Moon Magic, a power he had sworn never to touch. ~~The magic most natural to him.~~ The last time he had seen it wielded, it had led to the academy's destruction. But there had been no other choice. He had cast the banishment spell, lifting himself into the air as Dark Enchantress Cookie tore their Souljams, their very souls, from them. The explosion had ripped through the kingdom, the pain blinding and all-consuming. And then, nothing.
Now, here he was, awake once more. Why? How? As these questions swirled in his mind, he felt a strange sensation, as if invisible strings were tugging at his limbs. Panic surged through him as he realised he was moving against his will, his body tracing the exact path of his memories. He tried to speak, to cry out, but no sound escaped his lips.
“No! Run! Dark Enchantress is coming! Evacuate the cookies!” he screamed, his voice hoarse with desperation. But the words seemed to dissipate into the air, unheard and unheeded. The cookies outside moved about their routines, oblivious to the impending doom. Children played in the streets, vendors hawking their wares, and guards patrolled, all blissfully unaware of the threat looming over them.
The nightmare would unfold before him with horrifying clarity. His friends—the heroes—were nowhere to be seen. Instead, dark silhouettes had taken their place, shadowy figures that seemed to mock his efforts. Was it because of the Souljams? Could this memory not replicate them because of the artefacts which housed their power?
The endless battle raged around him, the air thick with the stench of smoke and the cries of the wounded. Cake monsters swarmed the castle, their grotesque forms looming over the terrified cookies. Pure Vanilla’s attempts to heal his people felt like trying to stop a flood with a sieve. Every spell he cast seemed to evaporate into nothingness, swallowed by the overwhelming darkness.
The invisible strings tightened around him. It constricted his movements, squeezing his mind. His autonomy slipped further away with each passing moment. The fog in his mind grew denser, suffocating his thoughts.
He felt every wound, every drop of jam that spilled, every life that was lost. He could see the faces of his people contorted in terror and agony, and hear their screams echoing in his mind. His friends fought, their forms blurred by exhaustion and jam. Yet no matter how hard they fought, the cake monsters kept coming, an endless tide of destruction.
The sky would fill with magic circles, blue eyes of the runes staring down at the target as he used magic that he swore to never use, for the second time. He would see her malevolent grin, and feel the agony of the explosion that followed.
And then, he was back in his bed, the cycle beginning anew. The loops continued, over and over, each one more harrowing than the last. As time stretched into eternity, Pure Vanilla Cookie felt his thoughts growing quieter. Centuries seemed to pass, each loop eroding a bit more of his will. He couldn't move, couldn't speak, and soon, he feared, he would no longer be able to think. In the moments of silence, his mind would turn to White Lily Cookie, the one he had loved so deeply. She had become Dark Enchantress Cookie, the architect of his suffering and the destroyer of his kingdom. Yet, despite everything, he still loved her.
The pain of that love was like rose thorns digging into his heart, a constant, aching reminder of what once was. He had loved her so dearly, had kept her transformation a secret from their friends, hoping against hope that she could be redeemed. But now, as he watched his beloved kingdom and its innocent people crumble time and time again, the anguish was almost too much to bear.
To love White Lily Cookie was to love a rose. To love her was to let the rose crawl up him, letting its hurtful thorns dig into his fragile dough. His jam would paint the delicate petals red, and once gone, wounds and scars would be left to taunt him of his foolish desire.
She had been gifted a bouquet of hearts, yet the only one his moon had taken was his own. She dangled the prize in front of him like a carrot on a stick, and he ran the race despite being the only competitor. She blindfolded him of the fact, and let Pure Vanilla run himself ragged until he could give no more. Then, she left. Left with everything that was Pure Vanilla, left him empty and hurting. Trapped. Left in all her gentle and loving glory, as her beautiful soul was tainted and twisted into the monster that had taken her place.
He did not care for the traitorous thoughts wondering if he was feeling the wrong feelings and thinking the wrong thoughts. He could not care, for he loved her nonetheless. Loved her poisonous, uncompleted promises. Loved her for the nights of waiting by the academy garden, gazing up at the sky, at clouds that would never part to allow him a glimpse of her smile. Loved her for the incomplete dances she swore she would return for, leaving him alone and abandoned in an empty ballroom. He loved her unconditionally. And for this, White Lily Cookie had become his greatest torment.
Each encounter felt like a knife twisting deeper into his heart. The sight of Dark Enchantress Cookie, her once gentle eyes now filled with malice, was a reminder of everything he had lost. She had been his moon, his guiding light, and he had loved her with a purity that he had thought unbreakable. But the darkness that had taken her was relentless, and it had shattered her, and him, beyond repair.
The White Lily Cookie he loved was gone, replaced by the Dark Enchantress Cookie who revelled in his suffering. She was the creator of his endless torment, the reason his kingdom lay in ruins, and his people were lost
What a fool he was.
Pure Vanilla Cookie, awoke in a bed not his own. His limbs were not strung by strings that cut into his dough, and his thoughts were…loud. Clarity such as this was so incredibly rare.
He took in the room, noting how the other cookies, the ones who had…saved him, were still asleep. Quietly, he slipped out of the room, his steps soft and deliberate, as if any sound might shatter this fragile moment of peace. The hallway was dimly lit, shadows playing along the walls. He moved with purpose, though his heart was heavy with the familiar ache of his memories.
Reaching the garden, he paused for a moment at the entrance, breathing in the cool night air. The scent of flowers and earth was a reminder of simpler times. He walked towards the patch of lily flowers, their white petals glowing softly under the moonlight.
Sitting down among the lilies, he stared up at the moon, its pale light casting a gentle glow over the garden. The tranquillity of the night wrapped around him, and for a brief moment, he felt the weight of his sorrow lift.
His thoughts turned, as they always did, to White Lily Cookie. The moon reminded him of her—bright, beautiful, yet distant and untouchable. He remembered their nights in the academy garden, the way she would laugh and talk about the future with such hope. Those memories were bittersweet now, coloured by the centuries of pain.
The garden was silent except for the soft rustle of leaves in the breeze. Pure Vanilla Cookie closed his eyes, letting the memories wash over him. He could almost hear her voice, see her smile. But then the image would shift, and he would see her as she was now—cold, dark, and filled with a malice that seemed impossible for someone who had once been so kind. He hated that he loved White Lily, a love that had once been pure and untainted. But he loathed Dark Enchantress to the point it hurt.
As the night wore on, Pure Vanilla sat alone. Though he could pretend that he was not, that there was another by his side. Perhaps…even four, all five of them together, underneath the starlit sky with the scent of campfire smoke in the air. He did not know how long this clarity would last, how long before he would be pulled back into the muddy thoughts and fog. But for now, he rested in the peace of the garden, and the bittersweet memories of the one he loved.
Under the moonlight, surrounded by the lilies, he allowed himself to simply be. To remember, to grieve, and to love, even if it was only for a brief, stolen moment.
114 notes
·
View notes