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zaharya · 2 years

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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.

#this was a lot of effort #it's literally over 3000 words #pls be proud #i just want a headpat and validation #also i hope it helps #adhd #science #adhd science #research #rejection sensitivity #emotional dysregulation #medication #stimulants #adhd meds #information #comment response #reddit #purely informative

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