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.
Please state your contentions clearly instead of making unsubstantiated claims.
I don’t have to.
No claims in the initial post have been substantiated or sourced. Besides “trust me bro”.
But ok. Let’s start with a few.
First of all there are balances between neurotransmitters that are important. The seretonine, dopamine norepinephrine balance is one of these.
Its also important to note that this balance is different for everyone and each brain reacta slightly differently to medication.
The original post claims that Prozac lowers dopamine.
This is not true. In some patients it elevates seretonin levels and these elevated levels may cause the brain to release less dopamine.
This is not a guarantee and there is no direct mechanism through which prozac affects dopamine.
Thus it is incorrect to say that Prozac lowers dopamine without qualifiers on the how and the when. This is one reason why Prozac does work for some and doesn’t for others. (It also carries the side effect of increasing depression in some cases).
Now let me point out some other things. This person was diagnosed with depression prior to adhd. Which likely means their depressive symptoms were already present. Though this is not the point of their post, one of the symptoms of depression is distractability and low motivation to do things. Likely why they were originally prescribed prozac.
Now, to loop back, Prozac does not work for everyone.
Secondly, what they’re describing on Vyvanse sounds like the colloquial “Vyvanse crash”. Or what happens when your system doesn’t have enough of the Vyvanse to last the day. Typically the way to manage that is to up the dose.
So yeah. I think they got some shit in their post wrong and it should be removed for that.
You start off by responding to someone asking you to state specifically what you find objectionable instead of vague accusations with that.
Everyone is free to verify anything I said they worry may be incorrect. I was writing a discussion forum post on my own issues with ADHD and obtaining an accurate diagnosis, not a formal research paper. You don’t seem to pop in to every post here and complain if users don’t provide sources for every word they say.
I never claimed to be a world leading expert on the topic. I can’t diagnose or prescribe medication for anyone here. I haven’t attempted to diagnose others and wouldn’t. What harm is it you see in my providing my own experience and understanding so that anyone who might be facing a similar situation to learn more on the reasons behind it in my case and discuss those possibilities with their own doctors?
In all of this the only qualm with my post clearly written detailing my own personal relevant history and experience with this disorder, in a paragraph where I explain why taking prozac made me specifically feel much worse instead of better, when I said that Prozac decreases available dopamine I didn’t put a little asterisk there and a footnote to say that clearly not all medication does the exact same things to all people in all cases when combined with any and all other medications and physical and mental health issues.
And…Oh! Look at that. You just said lots of things and I don’t see any sources to substantiate them. Why is it that you feel it’s acceptable for you to do that, but not for me?
What is the point of this? A huge part of the overall point of my entire post was to demonstrate that people who present symptoms commonly associated with depression might actually have ADHD. Those symptoms are rarely listed anywhere for ADHD, and yet very possible for those with a large deficiency in both dopamine and norepinephrine.
Yeah, Prozac does not work for everyone. It especially isn’t doing to help someone who doesn’t have any problems with low serotonin.
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.
Except I mention that we did increase the dose and that resulted in me feeling more exhausted, not less.
I also repeatedly mentioned that it only takes 3-4 hours after taking the pill for me to start feeling pulled down and exhausted.
As you can read for yourself in this handy source due to the time needed to snip the lysine from the chemical and render the dextroamphetamine pharmacologically active, when taking Vyvanse the Tmax for dextroamphetamine is around 3.5 hours.
A person is not going to be “crashing” because an amphetamine medication is wearing off at in the exact time window when that medication is becoming most active in their system. The Tmax is the effective peak.
You were just completely wrong in something you said to try to point out me being wrong. Should your messages be deleted?
More to the point, does one have to have perfect knowledge of all things to speak here? Are the people with ADHD who post and reply here only permitted to do that if every word they say is sourced and referenced and they are flawless beings incapable of being incorrect or failing to fully detail every possibility under the sun?
That’s sort of a strange take to have on a mental health issue that is extremely difficult to study, has undergone several large changes in understanding over the last few decades, and which the biological effects and differences versus average are still being determined and few even risk attempting a guess at a cause other than to say “genetics.”
The most learned neuroscientists and psychologists on the topic of ADHD write using terms like “we believe”, “it seems likely”, and “research indicates” because the internal specifics are nearly impossible to analyze in action in living patients and so even for the things most clearly some aspect of the biological problem we can’t say with any certainty exactly what is wrong or why.
If “some things might be wrong” is the metric for deleting anything on the topic that would be calling for the deletion of pretty much everything about the topic except the few physical studies and patient statements.
You are not a medical professional and so providing your understanding could easily be spreading misinfo to people who need known-good info
That’s actually an assumption. You don’t know I’m not a medical professional, you assume that.
And if only medical professionals are allowed to post or comment and share their experiences with ADHD then we might as well delete the community since that would be the vast majority of everyone here.
It’s insane to say there’s harm in someone sharing their own experiences because they might not be right in all things at all times. If you have an issue with a specific thing, point it out. Say this specific thing isn’t correct. Advocating removing things because there might be something wrong in them would once again mean deleting all user interactions here.
You yourself are advocating my comment not exist because there might be something wrong in it. If you are a medical professional, point it out. Say that specific thing isn’t correct.
Actually, I specifically did not say that. I said “understanding”, and left out saying “experience”, because sharing your experience is not an issue. But you are not just stating your experience. You are making medical assertions about the mechanics of neurotransmitters and medication and the way that they interact without having the necessary expertise to verify those claims.
This is nonsensical. A person does not have to be a research specialist in any given field In order to share their level of understanding of the topic at hand on a social media platform.
Anyone reading is both free to research further information of anything that may seem personally relevant and encouraged to do so. Nothing in any of this is telling people that their medical providers aren’t correct or prescribing drugs to change readers medications. Reading a surface level description of the varying symptoms that can present depending on which neurotransformer has the most severe availability deficiency can’t harm anyone. It can only give them more information to use And speaking with their own doctor or looking for more information on the topic.
You’re being disingenuous.
I’m being disingenuous? That’s rich, considering you have consistently applied a double standard for who must prove what they say and have misrepresented what I’ve said. My sole point, which remains true, is that presenting your understanding as if it were accurate will cause harm if it is not accurate. I don’t know if what you present as scientific fact here is accurate enough to cause more good than harm, and neither do you. At least put a disclaimer or something.
Yes, you were. You started out by saying that I was advocating for your comment to be not exist. That was not correct. I had been telling you that if we held the entire community to that unrealistic standard of only allowing medical professionals and people who couldn’t have possibly said anything wrong to post and comment then no one would be allowed to. You were either being disingenuous in your assertion that I had advocated for your comment to be removed or completely missed a very simple point I reiterated twice.
No, I haven’t. I haven’t asked anyone to cite sources anything. With one person I pointed out that they were complaining I didn’t have citations for everything in my web forum post, yet they didn’t have citations either.
Why would I or anyone else be expected to put a disclaimer on my words because you don’t know what they’re talking about?
I think it’s pretty clear you’re not a medical professional. At the least this isn’t anywhere near your specialty.
As for your increase in Vyvanse from 30-40mg. That’s the minimum, to one step over the minimum. The maximum is typically 70.
As for harm in sharing your experience, yeh. Self-medicating, refusing to take other meds etc is harmful.
You think being honest about self-medicating or not taking a medication that results in you feeling such a severe level of apathy that you would lie awake in bed for hours unable to think of a reason worth standing up is harmful?
I don’t agree at all. Mental health is something that can only accurately be diagnosed and only accurately have the effectiveness of any given medication evaluated based on open and honest communication. It’s hardly a secret that ADHD is one of many mental health disorders that cause people to be pushed internally into self-medicating because something is wrong.
It’s not great to encourage others to self-medicate instead of seeking actual legal help with their issues, and I didn’t do that. Making the topic taboo helps no one, it makes people hesitate to give honest accounts of their experiences and to be completely honest with other people with the same disorder or mental health professionals. It makes them less likely to get help.