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.
Introspection is always extremely interesting to me. You’re using the same brain to compare it to other people/you in different life stages, diagnose, seek help, analyze, commit to a plan, and evaluate effectiveness.
It’s also very hard to pull off successfully. I wish you the very best!
I used to have the quick exhaust problem, too, but the reason was much different in my case: I needed to take breaks, eat and drink as if I were not on meds, even though I don’t feel like I need it. Very counter-intuitive, like I’m in a great streak on a task and just want to continue, but I have to sit / lie down without being tired, eat without being hungry etc. That keeps me going.
Also, when just starting, a very very low dose gave me a brief kick that felt great.
Yeah, your body needs breaks and sustenance. Since I started the meds I’ve needed to take a low dose iron pill daily. With no meds my hematocrit level was always very stable, but with meds it drops too low without a supplement. Other levels aren’t as easy to test, but I imagine it’s a similar story with magnesium and vitamin c, so I take those now as well along with making sure to eat more protein.
Feeling energetic from a stimulant med is very different from getting enough sleep, it can mask exhaustion and people who take them and don’t sleep because they don’t feel tired can definitely end up running themselves into the ground. I think of it sort of like a spell from a book series I grew up reading, it makes you feel wide awake and energetic but you only feel that way so if you push it too far you’ll just fall over dead.
Interesting. Adderall did absolutely nothing for me. Vyvance was perfection but I acclimated to it so fast that I asked to use something else. It looked like it was going to become an addiction chasing the right dose forever. Now I have generic concerta and I can work like a demon, I can think, but I still fidget like crazy and I feel the doom all the time. And it makes me incredibly mean.
I don’t think there’s a way to resolve whatever flavor of neurospicy I have.
bold of you to assume anyone in this com is going to read this in its entirety. I appreciate the dedication to the topic tho and the apparent research you’ve done. hyperfocus go brrrr
I guess that’s why the two TLDRs 😆
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.
Too exist; didn’t skim ☹️
I can’t be the only one who has spent like 20 hours glued to a book and only managing to force myself to get up to go to the bathroom when I was about to burst inside otherwise. :P
Me every single working day of my life. I just keep telling myself I’ll do it in a minute when I reach a “stopping point”. I never do.
I just read this in its entirety, for the record
I did, but I was sitting on the toilet, that helped. :D
You must have been on the toilet for hours. You alright? I know meds can… well, it isn’t always pretty.
Take solace in the fact that there are many people who don’t get a diagnosis for their specific thing because they don’t meet the current criteria, although they could very much use help.
There are many of us. I know it doesn’t directly help, but you are not alone. It sucks. Hold on and keep up the fight in whichever direction is right for you.
I finally got mine. I’m on 20mg Adderall XR every morning and for my specific neurochemistry it seems perfect. That’s part of the reason I wanted to take the time to write all of this out. “Complete apathy” isn’t a thing many providers are trained to consider as a possible sign of ADHD. Trying to convince a Nurse Practitioner who got her license 30 years ago that pure d-amphetamine Vyvanse was honestly making me tired was impossible, she would have never considered Adderall as potentially being the right medication for that symptom wouldn’t have been possible without learning more about the neurotransmitters.
One problem people with disorders that have large changes in the thoughts on what’s behind them and involved and symptoms they can present over a few decades face is that it takes time for those changes in understanding to filter down to the people actually providing the care, even with the required ongoing education since that can never cover all topics in all detail.
There’s a world of difference between talking to a Nurse Practitioner who graduated 30 years ago and a Psychiatrist who specialized in ADHD and graduated 4 years ago.
Gifted student, never studied, until it all fell apart in university. Aphantasia, no internal monologue. Multiple rounds with doctors, insisting on prescribing anti anxiety meds, despite not experiencing anxiety. Getting dropped by doctors, and having to repeat the whole process again… Prescribed a pure dex based medication, which helped, but also didn’t…
The only places our stories really diverge is that I was diagnosed with ADHD as an adult, and I still haven’t had any luck getting a medication that works for me…
Exactly the reason I decided to spend hours writing it out. I spoke with a psychiatrist who specialized in ADHD and she said they’re starting to think that people with the more severe ‘inattentive’ branch symptoms might be one of the largest under or misdiagnosed groups out there.
None of my big symptoms are on almost any of the lists we see everywhere for ADHD. I hoped that writing a big detailed account of my experience with “apathy and no energy” actually being ADHD might help others stuck in the same boat.
The pure dex med helped me focus… on stuff I liked. Even hyperfocus way too much on it. But I was exhausted and the dishes still weren’t done. Changing to the same Adderall that’s been around for ages changed everything. Alert, energetic, focused, present… it’s crazy the difference comes from adding a bit of the exact same amphetamine molecule, but with the chemicals put together as a mirror of the dex.
The way I described dex is that it helped me stay on task, but did absolutely nothing to help me start a task
Yea, this is just a wall of text. Way too much for here, let alone in ADHD, haha.
Interesting starting point about dopamine/norepinephrine and vyvanse though.
If the starting point interested you, the first 2 sections are just background on my history that led to looking for help, and then struggles to get an accurate diagnosis.
If you jump to the header “The Revelation - What ADHD is” about 2/3 of the way down, I go in to detail about dopamine and norepinephrine and the varying symptoms that can present depending on which has the more severe deficiency, or when both do, and then explain why taking Vyvanse made me feel so tired.
Oh, I was more commenting on the irony of posting a wall of text to this community, of all places. It’s kind of funny.
I may get around to reading it.
A lot of people with ADHD love reading and can get hyper focused on it. I’ve spent nearly 24 hours straight stuck in a new book, sometimes only able to force myself to go to the bathroom when I was about to burst.
I see why this was removed and I’m glad it was. This should also be removed here I think. Not because it’s ai or anything. Because the information is most likely incorrect.
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.
I don’t have to.
You start off by responding to someone asking you to state specifically what you find objectionable instead of vague accusations with that.
No claims in the initial post have been substantiated or sourced. Besides “trust me bro”.
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?
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).
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?
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.
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.
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.
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.
So yeah. I think they got some shit in their post wrong and it should be removed for that.
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.
What harm is it you see in my providing my own experience and understanding
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.
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.
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.
It’s insane to say there’s harm in someone sharing their own experiences
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.
You think that users posting to detail the difficulties they had in obtaining an accurate diagnosis and the medication they need, the understanding that finally allowed them to do that, and then explaining a surface level understanding of the neurotransmitters behind the varying symptoms and why their own effective deficiencies of those neurotransmitters caused them to repeatedly be diagnosed with a completely different issue and why the stimulant medication they had been prescribed resulted in making them feel exhausted so that others facing similar issued with symptoms of ADHD not commonly listed or discussed might see something they can speak with their doctor about in order to get help… should be deleted?
Because it’s “most likely” incorrect?
Based on what?
What causes you to say that this is “most likely” incorrect? Clearly you can’t point to anything and say “this thing is incorrect” or you would have done that. Instead you’re just casting vague doubt.
Why?
I’m not anyone here’s mental health provider. I can’t change their prescriptions. What danger is it you see in people hearing my own symptoms, struggles, and the understanding that helped overcome them and being able to speak with their own doctors about those things if they seem similar to their own situation?
What is it that bothers you so much about one person giving their own account that you feel it should be removed and even celebrate the removal of people discussing their mental health in an appropriate community?
I think a person google doctoring themselves is dangerous at best. That’s why.
And I’ve seen criminally large amounts of misinformation in posts like this. And including this. It would also take far too long for me to catalogue all the misunderstandings in it.
But I already detailed in another comment about how seretonin increases do not directly decrease norepinephrine. And do not do so in all people as you have claimed.
I think a person google doctoring themselves is dangerous at best. That’s why.
When did I say I googled anything about this? You have zero knowledge of my education level. That’s just assumption on your part.
And I’ve seen criminally large amounts of misinformation in posts like this. And including this. It would also take far too long for me to catalogue all the misunderstandings in it.
Anecdotal statement followed by another vague accusation of misinformation and the attempt to excuse the vague accusation with saying that you taking the time to read and point out specifically what misinformation you are claiming I gave would take you effort.
When you accuse someone of doing something wrong, you need to be able to point to the specific thing they did wrong.
But I already detailed in another comment about how seretonin increases do not directly decrease norepinephrine. And do not do so in all people as you have claimed.
I already replied to that comment. You’re listing the wrong neurotransmitter here, but more to the point I never claimed that any pharmaceutical works the same way in all people at all times in all circumstances. In a post detailing my personal experiences, in a paragraph explaining why Prozac made me specifically worse instead of better I said that ‘Prozac reduces available dopamine’ without making sure to clarify that different medications can work differently in different people.
That’s it. That’s your complaint. In all of what I wrote. You simultaneously complain that it’s too long to read and point out misinformation in… and that it’s too short because I fail to constantly interject even more words to repeatedly point out that not all things are identical in all patients or all people on all days with the planets in all alignments while wearing hats of varying colors.
Only scanned it, like a good little ADHD girl, but I think a lot doesn’t apply to me. I also think a big issue with ADHD and same with Autism is they both refer to a wide variety of conditions that just exhibit similar behaviors in childhood that are hard for caregivers to handle. I happen to likely have a little of both, though I’ll likely never get a true diagnosis as I was way too old when anyone even suggested I might be anything other than lazy, anxious, and depressed. For me, Adderall allows me to function as I’m expected to for work, but isn’t the right drug at all for actually helping me. Cymbalta (an SNRI) did help for a long time in combination with Wellbutrin. I cut the Wellbutrin when I started Adderall and ended up super tired from the Cymbalta because I didn’t need the strong antianxiety effect once I had more spoons to spend from the Adderall. But really I probably would have been good on it if they offered a lower dosage. I’ve been floundering to find a drug that can help me mask for work but not exhaust me, kill my libido, or cause anxiety.
But really I just need a more accommodating workplace that doesn’t require really early mornings for no good reason, or long hours of pretending to be busy to get in the required 9 hours when I already put in 12 hours worth of work in the first 4 hours. And maybe one week off per year that’s not just random burnout/meltdown mental health days and maybe 3 day weekend here or there since that’s all we’re allowed to take even if we “get 15 days of PTO per year”, but can’t carry it over to make a real vacation in during times when it’s not “too busy to leave” which is usually early in the year before PTO accrues. That’s what would make me have normal brain chemistry. Not more drugs.
But again, just me…or just some of us, I should say.
Thanks for reposting here, I was very curious. That tracks with my experience and everything I’ve read about ADHD etc.
Don’t see why this was removed, it’s not controversal.
maybe the part about ordering stuff on black markets
I hate that. We all know that people with issues like ADHD very often self medicate in one form or another. Something’s wrong and we’re pushed to fix that, and for many it ends up in illegal drug use.
Of all things, mental health should be the one where people are encouraged to be completely honest and have that be seen as a good sign. I imagine it’s not easy to tell anyone you were smoking meth or something because it seemed to help make things better in some ways.
Getting that out to a doctor in a nice suit, while you’re there desperately trying to get help with a genuine issue that’s been derailing your life for decades, and having them decide that you managing that honesty is a problem and makes you less trustworthy is so very backwards. It pushes us to analyze everything. Should we be honest that a medication made us feel “stuck” doing something? Is that a red flag? What will they think?
Mental health diagnosis and finding an effective medication to help depends entirely on a patient reporting how they feel before and after as accurately as they can. Penalizing honesty helps no one.
This was a great read. I’m 40 and still don’t fully understand how my particular brain works. My friends are all on adjustment-type medications and I can’t keep up with all their Rx names and diagnoses. I’ve been hesitant to seek my own help because it’s all so confusing, but I see some of my own struggle in yours and you did a great job here clarifying a significant aspect of the space.
Mid 40s here myself. It’s definitely a complex topic, but understanding your symptoms can help figure out where you need help and then you can research what different meds do or just skip that to start, explain all the symptoms to a good Psychiatrist and discuss med options with them.
It’s worth doing. It might be effort to find a med or combination of them that works just right for you, you might be lucky and have the first thing you try seem to make things all better. Either way, once you get there every day can be so very much better than without.
I’m about your age and I feel like I’m finally understanding how my brain and body work. It’s nice. Like I have a lot of acronyms attached to me, but they all make sense and give me hints on how to adjust Life to best match my constraints. Also lets me shut down the Abusive Parent voice in my head: no, I’m not lazy, I just have a standing heart rate of 145 and need to sit down and drink electrolyte water (POTS, now I’m on beta blockers and my HR is much less objectionable).
Do you know it ritalin affects norephinephrin also?
I don’t know. Straterra was the only medication I really looked into much other than the ones I was taken and the one I’m now on.
I was just hoping that if the symptoms or situations seemed similar to anybody it would help them get a starting point on talking to their own doctor. A lot of my own struggle with going about a year saying that Vyvanse was making me tired and having people interpret that as a red flag of me trying to get more or not understanding why it was possible was because I was having appointments only with nurse practitioners who and not a doctor who specialized in adhd.
Yeah – the norephineprine deficiency description rings so true for me, and when i was briefly taking vyvance, i would get hyper fixated on things and i still wouldn’t have the mental energy to switch tasks.
Did you end up trying Strattera? I still haven’t, but I’m wondering how it felt for you.
I’m not sure what Wellbutrin is supposed to do, but it made me really anxious.
I didn’t. I considered Strattera as an option since it focuses on the norepinephrine transporters, but knowing that can take 2 months to have real effect, often has side effects that can make things worse during that time, and would still likely end up with me needing other medication on top of it made me want to try just dropping everything else and switching to Adderall XR first.
I was lucky to have the Nurse Practitioner I did. The issues weren’t things she was really familiar with, but instead of just assuming I was making things up she was willing to go interrupt the one Psychiatrist who specialized in ADHD the behavioral health center had and pull him in so I could quickly repeat the gist of what I’d said to him and he was willing to pause whatever he’d been doing and come listen.
How’s your sleep?
Sleep is great now. With no meds I’d sleep 10 hours some days and roll through the night others. With Vyvanse I felt exhausted as soon as it really kicked in, that got slowly worse all day, and then I’d pass out for 10-13 hours straight. Sometimes not even getting up to pee the entire time as a middle aged man.
Since I switched I take the med when I wake up, get things done feeling alive and awake and present all day, then knock out for like 7-8 hours and wake up feeling ready to go.
I’ll be honest, I skimmed the last section where you attempted to explain complex neurology you likely don’t understand (I’ve been there). Have you had a sleep study? Have you researched orexin deficiency? I’m not saying you have a sleep disorder but I have narcolepsy and it’s like ADHD but worse and stimulants alone will make the exhaustion worse. Also to your point on doctors not understanding unless you explain your symptoms exactly how they expect the presentation, I remember one visit where I just said “if I don’t lay down right now I’m going to cry” but to me I didn’t feel sleepy, so yeah.
I don’t have any issues with that. My daily life and sleep are both great now that I switched to a med that included the isomer I needed.
It seems a bit weird to say you only skimmed a thing, yet you assume the writer doesn’t know what they’re talking about.
Interesting… I wonder if my own experience would seem familiar to you? I can still enjoy things, and I can keep doing things I enjoy if I’ve already started doing them, but if I haven’t I still don’t want to start doing them. Knowing they’ll be enjoyable doesn’t help much. On a normal day, I only do the things that would cause immediate, severe problems for me if I kept putting them off. That means that on a work day, I lie in bed until I have to attend a meeting at work (but once I do start working, I usually work late because I like my job). On a weekend I just stay in bed all day. I don’t even play video games anymore - I just watch videos of other people playing videogames.
I used to think this was depression, but treatment for depression makes me less acutely unhappy without giving me any more ability to actually do stuff. In other words, without depression treatment I don’t do anything and I hate my life. With depression treatment I don’t do anything and I dislike my life. I’ve tried a variety of depression treatments and that’s all I get from them.
The catch is that I’ve tried Adderall and Ritalin too. They made me feel more alert, but my problem isn’t sleepiness or physical tiredness - physically I feel fine. So they didn’t help. Right now I have no idea what I could try next.
Your experience does seem familiar. With the things I actually enjoy like my favorite types of TV shows or book series or games it was like most of the time I was completely unable to get in to them at all. I would try to start something and within minutes shut it off and go back to doing nothing.
Some rare times I would manage to get in to a thing to the point where I’d binge a series all day. If I woke up feeling like watching more and jumped right back in to it I might keep watching for 2 or even 3 days. But if I didn’t do it right when I woke up, or woke up not feeling interested in it at the moment, then I’d never pick it back up. The minute I didn’t feel like watching it was just over.
It was like something internally was where it needed to be for me to enjoy that thing and so I stuck with it and kept going, but it was rare for me to be in that state and it never lasted for very long. Usually a few hours, and like 2 times over 2 years up to 3 days.
With me the problem seems to have been that dopamine. My body was producing it, but it was seemingly being removed by transporters as soon as it was released before it could have much effect. That meant even things I should like didn’t matter. There was no pleasure or enjoyment in them.
The Adderall works to both push the body to release more, and to stop removing it so quickly when it does. It’s a complete change for me, since my body was making enough dopamine already.
I’m not a doctor, but what you said would make me wonder about a genuine dopamine deficiency where the body isn’t producing enough of it in the first place. In that case taking Adderall wouldn’t really help with the enjoyment of things. It may at first, or occasionally, as it forced the body to push out whatever dopamine it had reserved and kept it present for a while, but if the body isn’t producing enough it doesn’t change that.
That isn’t a thing I know anything about the diagnosis or treatment of. But if you’re not really depressed, and you just aren’t getting enjoyment from the things that should provide it…
Ok. Here’s the most personal example I have for critically low dopamine. My entire life I experienced orgasms as one single jolt of relatively mild pleasure that was there and gone within a second. I thought that the eyes rolling into the back of your head looking like you’re having a seizure thing in movies was just joking exaggeration.
The first time I tried adderall changed that completely. It went from that to 5-6 distinct jolts that were so strong they lingered into something that grew until even after the last jolt ended it took several seconds to slowly fade away. From 1 second of what I now realize was very mild pleasure to like 15 seconds that still seems insane to me. It’s not exaggerating to say it seems like a 1000x increase in pure pleasure.
That’s part of why I knew the Vyvanse was working in some ways but not others. With no meds I go back to nothing in that regard, but if I’m on Vyvanse or anything that increases the availability of dopamine that crazy difference comes back.
I didn’t understand why I didn’t see people all over the internet talking about how insane this difference is until talking to a dr who specializes in ADHD recently they said that makes it sound like my dopamine level was about as low as it gets and that’s why even an orgasm was relatively without pleasure for me. It needs dopamine. So if that sounds at all familiar maybe an area to look in to.
