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.

  • muusemuuse@sh.itjust.works
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    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.

  • Strider@lemmy.world
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    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.

    • Trump Rapes Kids@lemmy.worldOP
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      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.

  • skeevy_scallops@feddit.online
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    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

    • Dave@lemmy.nz
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      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.

    • Trump Rapes Kids@lemmy.worldOP
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      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

      • deliriousdreams@fedia.io
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        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.

  • Ada@piefed.blahaj.zone
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    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…

    • Trump Rapes Kids@lemmy.worldOP
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      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.

      • Ada@piefed.blahaj.zone
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        The way I described dex is that it helped me stay on task, but did absolutely nothing to help me start a task

  • Jul@piefed.blahaj.zone
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    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.

    • Trump Rapes Kids@lemmy.worldOP
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      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.

      • sem@piefed.blahaj.zone
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        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.

        • Trump Rapes Kids@lemmy.worldOP
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          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.

    • Trump Rapes Kids@lemmy.worldOP
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      Thank you. That’s why I wanted to explain it all.

      It’s hell trying to explain “this amphetamine is making me feel exhausted and I sleep 13 hours straight” looking for real help and have the person you’re asking for help assume you’re lying and just trying to get more controlled meds because they don’t understand how that would be possible and you don’t have the words to explain it.

  • Onomatopoeia@lemmy.cafe
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    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.

    • Trump Rapes Kids@lemmy.worldOP
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      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.

      • Onomatopoeia@lemmy.cafe
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        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.

        • Trump Rapes Kids@lemmy.worldOP
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          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.

  • ∟⊔⊤∦∣≶@lemmy.nz
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    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.

      • Trump Rapes Kids@lemmy.worldOP
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        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.

  • infinitesunrise@slrpnk.net
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    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.

    • Trump Rapes Kids@lemmy.worldOP
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      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.

    • smh@slrpnk.net
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      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).

    • Trump Rapes Kids@lemmy.worldOP
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      3 days ago

      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.

  • loonsun@sh.itjust.works
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    3 days ago

    Damn, I’m very similar and I guess I recently stumbled into meds for this as Im on Adderall and Effexor which is and SNRI which boost my neuroepinephrine. It somehow fixed my sleep so that works.

    • Trump Rapes Kids@lemmy.worldOP
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      3 days ago

      Glad you managed to find help too. It’s crazy to me that “complete apathy” can be a symptom of ADHD, or that taking certain stimulant ADHD meds can cause some people to sleep way too much. No one ever mentions anything like that.

      • loonsun@sh.itjust.works
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        2 days ago

        We are still in the infancy of understanding things like ADHD and neuropharmacuticals. I’m a psychological researcher myself in a non clinical domain and let me tell you, we have only started really improving the way we do things in the last 10 years or so. Some of the experts in autism I know for example expect the landscape of how we understand these conditions is going to be radically different in the years to come.

        • Trump Rapes Kids@lemmy.worldOP
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          2 days ago

          Of course. Biochemistry is too complicated. There were dozens of chemical interactions going on in each of the trillions of cells in the body every instant.

          AI was trained on as close to the total sum of accumulated human knowledge as possible, the frontier models now have many trillions of data points in their training. But if there is a complete series of texts on the entire and perfect knowledge of human biochemistry, micro and macro, including all pharmacology it would dwarf that.

          I was never trying to claim to be an all-knowing god, just saying hey here’s my experience and here’s what I learned and why I was having a hard time getting an accurate diagnosis and why a stimulant medication was actually making me feel exhausted.

  • searabbit@piefed.social
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    3 days ago

    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.

    • Trump Rapes Kids@lemmy.worldOP
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      2 days ago

      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.

  • ArbitraryValue@sh.itjust.works
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    3 days ago

    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.

    • Trump Rapes Kids@lemmy.worldOP
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      2 days ago

      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.

  • fakeman_pretendname@feddit.uk
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    3 days ago

    Huh, deleting the original post is annoying as shit. I’d bookmarked it because it had really useful information in it.

    Anyway, I’ll repeat my post from the previous one:

    I’m sorry you had to go through that, but thankful that you took the time to write that up.

    There’s some very valuable info in there, possibly for me, but definitely for someone.

    Thanks for going to the trouble of reposting it! :)

    • Trump Rapes Kids@lemmy.worldOP
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      3 days ago

      Sorry it took so long to reply. I appreciate the reply(s) and hope seeing a personal account of how someone can have ADHD without the symptoms commonly listed for it can help others who might be going through something similar. :)