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submitted 1 day ago by Abyssian@lemmy.world to c/adhd@lemmy.world

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.

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[-] Dave@lemmy.nz 19 points 1 day ago

I guess that's why the two TLDRs ๐Ÿ˜†

I read it all. A lot resonated with me. The comment about being good at interviews and at a job initially but after 9 months going to shit, well I was the same except once I worked it out I spent 10 years getting a new job every year, until eventually I got into IT projects and now get something completely brand new 2-4 times a year and that works well for me.

this post was submitted on 09 Aug 2026
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ADHD

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