This is not AI. I spent 3 hours writing it and some jackass modding the Mental Health community deleted it without reading because I tried to be nice and break it up with headers and bullets to make it easier to read when it got so damned long.
tl;dr: Patients with Aphantasia and a controlled/intentional inner monologue don’t have the words mental health professionals are looking for when it comes to ADHD treatment!
tl;dr2: ADHD is a deficiency in available dopamine and norepinephrine. Different people have different levels of deficiency between them. Dopamine is the primary one, but medication that targets it isn’t going to be effective in patients with a norepinephrine deficiency. If a person with a large deficiency of both dopamine and norepinephrine takes Vyvanse, it will make them sleepy.
Section about my history of ADHD issues -> problems getting accurately diagnosed -> Understanding! What ADHD really is! (and wtf is wrong with me)
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My life / background info
I was diagnosed with ADD as a kid, but my parents didn’t like the idea of medicating a kid and didn’t usually have insurance anyway, so I never got any sort of treatment.
I could sit there reading a book through class in highschool, not turn in any homework, and get everything right on tests plus extra credit and pass the classes without any effort. When I hit college and things suddenly took effort and work, I didn’t put in that effort and it went very badly.
In my late 20s I realized I had a repeating pattern. I’d do amazing in interviews and other situations my brain tagged as ‘emergency’, but after getting a job it would slowly go to hell over 9 months or so and the only times I’d do amazing was in any rare emergency situations that came up. I would lose the job, but then usually use that position on my resume to talk myself in to something that paid the same or better.
I realized that it was the untreated ADHD, but since I’d just lost my job I didn’t have health insurance. I got my hands on a 45 day supply of 10mg Adderall and everything about every day was better. I started jogging and climbing mountains, my place was clean, yard work done, I had a to-do list on my phone and would add anything I thought of thought the day to it and always be working through it. It was a complete change.
I tried to get help with the issue, but after paying $300 cash for a visit was prescribed… Prozac. I didn’t bother picking it up. I said fuck it and spent 10 years ordering pharmaceutical grade amphetamine from the dark net and using a mg scale or volumetric dosing.
Other important info about me is that I have Aphantasia, which means that when I close my eyes I see black or orangish black if there’s light on the other side of my eyelids. I can’t picture anything.
I also have a intentional inner monologue, which means that my inner voice isn’t constantly narrating everything I see and chattering on endlessly. That sounds like it would drive me insane. If I’m taking a serene walk on a snowy night, or petting my dogs, or doing the dishes, or anything else unless I’m actively considering something intentionally it’s just internal silence.
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The Diagnosis and Treatment Struggle
About a year and a half back I finally decided to try getting legal mental health help again. I explained everything and was honest about having self-medicated and how I’d done it. The NP I spoke with prescribed me both Prozac and 30mg Vyvanse. I started taking both as this person seemed to be listening to me and prescribed both.
The first day the Vyvanse was a big help and I got things done. Within 3 days that changed and I realized that even 3-4 hours after taking it I felt more tired than I had beforehand, and that just grew and pulled me down harder as the day went on.
When I went back for my next appointment I told her that the Vyvanse was making me tired. She was surprised by that and asked a few questions. I tried to explain that it was somehow helping in some ways, but also making me exhausted. I didn’t have the words to explain it.
The Vyvanse helped in weird ways. With things I actually enjoyed, I could focus on them and easily hyperfocus on them. Not getting up to go eat. Spending hours and hours stuck doing a thing. If I enjoyed that thing. It wasn’t any easier to go pick up dog poo or mow the yard. The house wasn’t clean. I wasn’t making and using a to-do list. It also made me feel more exhausted than without it.
This went on for 6 months. I kept telling the NP each appointment that it was making me tired, but because I knew that hyperfocusing on things was something people tend to associate with taking or abusing ADHD meds I kept from mentioning that part. It seemed like it would be seen as a red flag that I didn’t need the meds, and I knew that I really did but that something wasn’t right with this one.
Suddenly my Medicaid was cancelled and it took me 3 months to clear that up. I didn’t have any medication for those 3 months. When I finally got things straightened out I was told my NP had left the company and I was with someone else.
This new NP seemed to interrogate me the entire appointment and in the end said she was putting in the order for my Prozac. I asked about the Vyvanse and she said she was cancelling that. I seriously needed actual help with Adult ADHD and was angry and near tears. I told her I wanted to talk to someone else and she said I had to set that up with the front desk.
I left her office and went to the in house pharmacy. They had received the order for Prozac and were filling it. I waited 30 minutes and went back to the window… and they told me the NP had called and cancelled that order.
The front desk told me that the person I’d need to talk to wasn’t available and told me to call them. I went home and called and left a voice message. 2 days later I received a call back. The person on the line told me that the NP had cancelled the Prozac saying that I didn’t want it and only wanted controlled ADHD meds. I had never said that. She put the order for Prozac back in and set me an appointment with a different NP 6 weeks in the future.
I started taking the Prozac alone. It slowly made everything worse. By the week before the appointment I would wake up and just lay in bed with my eyes closed. I couldn’t think of any reason to open my eyes and start moving. I wasn’t feeling sad or depressed. I wasn’t hiding from life. I just couldn’t come up with any reason anything was worth doing enough to be worth the effort of doing it. Food, coffee, movies, video games… nothing. I stopped taking the Prozac.
The appointment with the new NP was amazing from the start. She asked how I was doing and I explained to her that I had sat there for an hour not really feeling like it would be worth it to show up and had only decided to give it a chance at the last moment because someone else had suddenly wanted to go to the library next door and I rode with them. I explained the complete apathy I’d been feeling and how I had stopped taking the Prozac.
She told me I needed the Prozac but clearly needed the Vyvanse too and proscribed both. Instead of spending the entire time typing into the computer she put those order in within like 5 minutes and spent the rest of the appointment just talking and getting to know me. It was great.
I picked up the Vyvanse and took it and the Prozac as she’d said. When it kicked in it was a much better day and I got more done. But once again within 3 days it was making me feel tired and pulled down within 3-4 hours of taking the pill, and that feeling just grew through the rest of the day.
On my next appointment I told her about it. She listened and upped my dose from 30mg to 40mg. It made me feel more tired instead of less. As in there are days where I will wake up, take 40mg Vyvanse, wait an hour before I have coffee so the acid doesn’t make it less effective, drink 30oz or so of coffee, and start feeling tired and worn out 3 hours later. I’ll try to push through the day, but by the end I’m so exhausted I’ve slept up to 13 hours straight several times. 10-11 is just normal now.
And then next appointment I told her all of that and she seemed totally thrown off to hear it. She asked if I wanted to try to increase the dose again, and I said no because despite the tiredness it does help me do more than I would do without it, but increasing it had increased the exhaustion. That maybe a month wasn’t enough time for me to be used to it and it would get better. I knew that wasn’t true but figured I’d just have to deal with sleeping so much.
But when I went home I finally started to study my ass off about ADHD and the differences in meds and what they do and finally figured out the problem.
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The Revelation - What ADHD is
- ADHD is a deficiency in the availability of Dopamine and/or Norepinephrine where it’s needed in the brain.
- The lists of ADHD symptoms we’re used to seeing were begun decades ago with a focus on young boys. They are horribly lacking in describing symptoms of patients with a deficiency of norepinephrine availability!
ADHD is a disorder in the regulation of attention. We’ve all heard that.
When study of ADHD first started it was theorized that it was a deficiency of dopamine. That theory lasted for decades. Virtually everything out there that lists symptoms is totally focused on dopamine.
Only recently it’s been become understood that ADHD is actually a disorder that deals with both dopamine and norepinephrine. Different people with ADHD have different issues and different symptoms depending on their relative levels of the two. Some people with ADHD have a deficiency in only dopamine, some in only norepinephrine, but it’s likely most have some level of deficiency in both of them though one may not be as severe as the other.
You can’t actually physically check the available level of these chemicals where they need to be in the brain in order to do their job while a person is alive. That makes it very hard to really understand, diagnose, and treat from the outside.
Dopamine
Dopamine is used in the brain’s reward center. It’s what makes you feel good for accomplishing a task, eating a brownie, watching a movie you like, or having an orgasm. It adds value to activities. It’s an internal incentive that makes things more worth doing.
If you don’t have enough available dopamine then you get little to no internal reward for anything. Even watching movies or playing video games you theoretically should enjoy seems dull and sort of pointless. With a severe dopamine deficiency an orgasm can consist of one single note of fairly mild pleasure that lasts less than one second.
People with primarily a dopamine deficiency present with the symptoms we’re all used to hearing. Fidgeting, impulsiveness, recklessness, being unable to sit still, seeming addicted to a phone or a game, or constantly wanting sugary foods. The lack of dopamine where it needs to be in the brain means that the internal reward for doing anything is too low, and pushes people to seek out those rewards.
Norepinephrine
Norepinephrine is more complex to explain, but as far as ADHD is concerned you can consider it the fuel needed for mental activities. It’s what we need in order to focus on something we don’t enjoy doing, the thing that helps us stop doing something we enjoy when we hear someone say that dinner is ready, and what provides the overall mental energy to successfully navigate from one task to another and perform them effectively.
This might be the most undiagnosed group in mental health, because it looks nothing like what we’re told about most ADHD symptoms and the complete opposite of many of them. It’s begun to be termed things such as Sluggish Cognitive Tempo (SCT) / Cognitive Disengagement Syndrome (CDS). Research has been catching up and realizing this is a facet of ADHD, but the symptoms are still almost completely absent on anything I’ve read.
If you don’t have enough available norepinephrine you have no energy. You feel lethargic, tired, worn out. You may seem to have sluggish thinking or mental reactions. It may feel sort of like there’s always a blanket wrapped around your mind. Like you’re never really fully awake and present in the moment. You don’t have the mental energy to focus on things you don’t really enjoy, or things that feel like mental work or effort.
If you DO have enough available dopamine but do NOT have enough available norepinephrine then you will be able to focus on things you enjoy. You will have an extremely difficult time stopping doing those things. The fact that you’re getting the dopamine reward for doing something you like is outweighing your lack of mental energy to focus, and you end up hyper focused. But you have no mental energy to focus on things you don’t enjoy, that seem like work.
And with both issues combined you get… me! :/
If you have a severe deficiency of BOTH dopamine and norepinephrine you might seem clinically depressed. I was diagnosed with Major Depressive Disorder, because I went to get help and told them that I had complete apathy and was always tired. Nothing seemed worth doing, even if I should enjoy that thing. In a year I’d watched 2-3 episodes of a TV series I liked and maybe 2 movies, that was all. They heard that and instantly said depression and prescribed Prozac, but it wasn’t depression. That’s why the Prozac alone actually made it worse. I wasn’t apathetic because I was sad. Yeah, sometimes the condition I was in and life as it was vs what it should have been was a depressing thing to think about, but that was because it was a shit situation, not because of a chemical imbalance pushing me to be depressed.
I was apathetic because I have deficiencies in availability for both dopamine and norepinephrine, and both of them are probably as bad as they can get. Nothing at all gave me any sort of reward. The things I should enjoy weren’t worth the effort to bother with. They were as tedious and pointless as the things I never enjoyed, because I had no dopamine where I should for any sort of internal reward. My lack of energy was constant and severe. I felt like that quote about butter smeared over too much toast. Worn thin all the time, even just waking up. It’s not the same exhaustion you feel after a long hard day of physical labor. It’s a lack of the mental energy that drives you do do anything. I could sit there for several minutes just thinking about how much work it would be to lift my arm up off the table. As a physically healthy adult man.
Because I have Aphantasia and an intentional inner monologue, I didn’t have the words they were looking for to describe things. I didn’t have thoughts or images constantly interrupting me from doing anything. Even the base description used to explain dopamine vs norepinephrine is “noise vs signal.” I didn’t have any internal “noise” that needed quieted. I just had no energy, trouble focusing on anything, and nothing mattered or seemed worth the effort of doing. Which sounds to mental health providers like the words for depression.
Vyvanse couldn’t help me. It’s amphetamine, but it’s focused on dopamine.
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The simple med problem
Amphetamine has those two isomers, mirrors of one another. Dextroamphetamine and Levoamphetamine.
- Dextroamphetamine primarily effects dopamine availability.
- Levoamphetamine primarily effects norepinephrine availability.
Vyvanse is 100% dextoamphetamine. It was helping with the dopamine deficiency, which is why I could hyperfocus on things I actually enjoyed doing but couldn’t focus on things I didn’t enjoy.
It’s why I felt exhausted. If you have a dopamine deficiency it’s an internal stressor, and when you fix that it makes you feel more calm and relaxed inside. I still had a massive deficiency of norepinephrine, so I already had no energy. Adding the extra internal relaxation to that = exhaustion.
Adderall IR/XR is a mix of 75% dextroamphetamine and 25% levoamphetamine. It helps with both deficiencies.
It’s also a name that’s way more known than Vyvanse. Had they simply prescribed it from the start it would have saved me over a year and a hell of a lot of stress. They didn’t because everyone is constantly warned about stimulant meds now, Vyvanse is considered impossible to abuse, and I didn’t have the right words to explain the issue.
Procac I’m no longer on. Because even though it’s been prescribed to me 4 different times in life, I never needed it.
Prozac increases available serotonin, but it also decreases available dopamine. That’s why taking the Prozac alone ended up with me laying for hours feeling like nothing was worth the effort of standing up to do it.
I already had catastrophically low dopamine and norepinephrine, and as the Prozac built up in my system all it did was get rid of the tiny bit of dopamine I had.
Thank you, this was a great post! My partner and I have been discussing it.
I have a little CDS-y behaviour with a lot of classic adhd, whereas she’s never flagged as adhd but has noticably slow response times to questions/new info despite being very smart, sleeps 10+ hours. She generally has way better task initiation than me, but often crashes out hard when something becomes slightly unpleasant where i might find that more engaging.
The part that we both bounced off of was talking about aphantasia & inner monologue. I don’t believe anyone i know “sees” objects they imagine. “Picturing” something comes with the sensation of vision (the qualia?) without any image - it’s always just black behind the eyes.
Similarly “constantly narrating everything I see and chattering on endlessly” doesn’t describe our experiences of having an internal monologue. My brain will produce internalized sentences about whatever i’m focusing on, and if i get bored my brain will start constructing arguments for or against things i’m passionate about or doing game design work - i focus on other things i like.
I’d love to hear if i’ve misunderstood the experience you’re describing, or if others have different experiences of imagining objects/internal monologue!
Here’s a great Reddit thread about aphantasia with 1000s of comments.
The first time I read about this I was floored that people could just visualise things at will. It was then I realised that to picture something is not a figure of speech.
Aphantasia surprised me as well. My entire life I thought that when someone said “Close your eyes… now picture an apple” they were using some form of analogy I didn’t really understand. Because for me it was always just that blackness. That isn’t true for everyone, and it not being true for everyone is something only starting to gain attention very recently.
It turns out that the majority of people can summon an internal image of an apple or whatever else. They can picture loved ones faces. I can’t do that, at all. I remember vague descriptors of what people I’ve lost looked like, but can’t picture anyone. I can’t visualize their faces internally and describe those inner images. Apparently that’s not usual.
Inner monologues are something with large variance between people. Some people rarely ‘vocalize’ internally in that way, some do so only when working through a complex topic or trying to learn new information, some do it nearly continually, and some are virtually unable to turn it off.
It’s not something I have a personal understanding of, but it seems that for a lot of people they internally vocalize a lot of what they see or happens around them in some manner. Sort of like an automatic use of that inner voice. The best I can do is describe my own experience.
If while I’m sitting here writing I head a loud explosion outside I won’t respond by internally vocalizing wondering what it was or what happened. If I’m mid sentence and that happens and I decide to go look outside, then the entire process happens in internal silence. Hearing the sound, making the decision to go look, standing, walking downstairs, opening the door, walking out to the porch and looking around, not seeing anything of note, and walking back to continue typing happen in internal silence. There are no form of internally vocalized words or questions or observations about anything.
The effects of dopamine vs norepinephrine availability deficiencies in ADHD patients are often explained with things like “noise vs signal.” Dopamine availability being low are those typical examples of fidgeting, restlessness, unable to sit still of both body and the mind, and with ADHD the mental aspect of that is considered a normal symptom.
That sort of “restlessness” of the mind can also be connected to and diagnostically conflated with the same symptom of “racing thoughts” often used for anxiety.
That last link says that: “Everyone has moments when their brain suddenly goes haywire. They repeatedly fixate on the same thought, like being stuck on a hamster wheel. Or their thoughts aimlessly bounce from one random topic to the next like a pinball.”
The previous link that: "Racing thoughts are rapid, often uncontrollable thought patterns that jump quickly from one topic to another, making it difficult to concentrate or stay calm. In ADHD, these thoughts reflect mental restlessness, similar to physical hyperactivity, but occurring internally. An ADHD mind frequently feels like it’s “always on,” continuously buzzing with multiple thoughts at once. "
I don’t understand the things in either link. It doesn’t match anything in my experience. Unless I specifically decide to think on a given thing, I don’t. My brain goes through the normal process of unconscious awareness where information streaming in from the senses activates relevant concepts so that I have them at hand if they become necessary, but if I don’t decide to internally think on a given thing with or without internally vocalizing on it, then I don’t.
It feels like reading an instruction manual on how to operate one device when the device in front of you has a completely different UI and none of the settings mentioned.
The combination of the Aphantasia and internal silence can mean that a person doesn’t have the frame of reference expected to give the key words used to differentiate between mental health issues. Since mental health is something where diagnosis and treatment both often rely entirely on the patient’s reports with no empirical validation, not having those key words can easily cause misdiagnosis.
I don’t fidget, or complain of restlessness and the inability to sit still, I don’t have racing thoughts, low frustration tolerance, mood swings, hot temper, or problems coping with stress.
Without medication my primary symptoms are lack of energy, nothing seems worth the effort of doing it, I can rarely focus on the things I actually enjoy because they seem as pointless to bother with as things like cleaning or picking up dog poo. I just sort of don’t care about anything, nothing matters, nothing is worth doing, and I feel completely drained of energy.
It’s easy to see why it was labeled as forms of depression multiple times. But it’s not. That can be the description of a person with ADHD who has severe deficiencies in the availability of both dopamine and norepinephrine, and that is something said far too rarely in far too few places that definitely needs more attention on it.
The chemicals the brain needs for it’s internal reward system and mental energy levels both being nearly nonexistent means there’s no energy to focus on anything and nothing brings any sort of pleasure so nothing is worth doing. It sounds like depression, and it even has sadness and other depressionesque emotions that come with it because of course living feeling like that can bring on those emotions.
But cause and effect is flipped. It’s not an overwhelming sense of sadness and depression causing it to feel like nothing is worth doing, it’s the brain’s reward and mental energy tanks being constantly near empty and nothing bringing any sort of pleasure or happiness that causes the person to feel sad and emotionally shitty.
And since SSRIs can often reduce dopamine levels, they can make everything worse instead of better.
Lol TIL my partner and i have aphantasia.
I’ve definitely presumed it was … well not a metaphor, just a loose way of talking, because picturing things is still has the same sensational as seeing a thing just no actual image.
Not really sure what you mean even on the sensation. If I open my eyes and can see a thing, then I see it. If I am not looking at a thing, I can not imagine what that thing looks like. I can remember descriptions and use those, but there is no mental imagery at all.
When someone says to picture a thing I don’t know what to do with that at all. I tried to do a meditation class once and the first thing they had everyone do was close our eyes. I managed that part. Then they said to picture a great big tree. I figured it was a metaphor or something and kept looking at nothingness. Then came like 30 minutes of instructions on picturing branches growing, and all the leaves starting as tiny buds and blossoming out, watching the leaves slowly fall and build up… almost every direction was like that.
“Watch as the hues of the leaves slowly fading from green to brown.”
I just never bothered going back, thinking it was a really weird waste of time. It was over a decade later when I was glancing through a Psych magazine and noticed an article that started out “When someone tells you to picture a cat or an elephant, you can see that thing in your mind’s eye. It turns out that not everyone can.”
I’ve read so many stories of other people that go just that same way. Being told to picture something in your mind comes up sometimes in life, but rarely enough that we all just sort of brushed it off as some weird metaphor we didn’t understand. Finding out people can actually picture things internally is so weird.
And sad. I’ve read stories where people feel depressed because after so many years or decades they can no longer picture the face of a loved one who passed. I never could. Inside my head is just… blank. No pictures, no words. I tell people I read and write so much because my head is empty otherwise and needs words in it. But reading novels has always just been words. I love authors who do into detail worth world building and making realistic characters, so I put up with them also being detailed in describing what things look like… but I just sort of float past those. I can’t picture anything building from the details, and without that those words in a book just slip by not attached to anything.
I mean that when i picture something, it feels how seeing something feels, except there’s no image. It feels like i’m seeing something. Like if i had to guess i’d say the same centers of the brain are lighting up when i see something and picture something - it feels the same in that way.
See i’ve done meditation like that and never thought it was a metaphor. I understood exactly what was meant and just pictured a tree. Buds bloom, leaves change color and fall. I can watch that all happen in my mind. My brain doesn’t conjure an illusionary image and put it before my closed eyes, but i can still access that visual information.
This was literally my first thought! - oh shit that saying about no longer remembering loved ones faces is so much more brutal than i realized.