Post-diagnosis frustrations - CHADD's Adult ADH...

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Post-diagnosis frustrations

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Hi all, this is my first post here. I just wanted to share my story (mostly as a vent because I don't know anyone else with ADHD and need an outlet/support group) but hopefully this is helpful to others out there too.

I am a young adult (26) working in science and had suspicions that I might have ADHD since highschool. I grew up in a relatively medicine-averse household so I didn't work up the courage to ask a doctor until a year or so ago (I was also homeschooled so there also wasn't really any teachers or anything that would've noticed). College was kind of a hell in a way - my first year I performed poorly academically, and then in my second year I developed (what I believe to be) coping mechanisms: nicotine+caffeine and extreme stress. I realized that I could not focus my attention very well unless 1) the subject was already very interesting or 2) I had a bunch of caffeine, nicotine, no distractions, and the deadline was right around the corner. It felt like the adrenaline of possibly failing would finally kick my brain into action. I had so many all-nighters (or even multiple days of not sleeping) due to chronic procrastination which I felt like I couldn't control. I'd overload my schedule (extra classes + work) so I was working around 80 hours a week because it was only in that zone of high-stress that I felt like I could actually do things. I think even though I hated all the stress the procrastination and overloading would bring I was addicted to it because I couldn't perform otherwise (and I found a lot of self-worth in academic performance). I don't how to explain it other than my focus felt like a switch (either all the stars aligned and I would hyperfocus, or they didn't and I couldn't focus at all). At some point I realized this lifestyle was really unhealthy and I tried so many times to change - I bought tons of self-help books on improving willpower, motivation, etc. and tried to implement the ideas but it still felt like it was out of my control. The failure of not being able to change I think led to lowered self-esteem. And at a certain point (a couple years ago, in graduate school) I think I just gave up trying - it was too exhausting and it felt like the amount of effort in trying to focus vs results was simply not worth it; this led to a sort of depression.

Anyways - a year ago (in graduate school, failing to meet almost every deadline/expectation) I realized a lot of these symptoms: chronic procrastination, inability to give focus to non-interesting tasks, hyperfocus on interesting tasks (I could work on an interesting subject for 12 hours at a time, even forgetting that I needed to eat), poor impulse control, etc. could be attributed to ADHD. I mean I had suspicions before, but I decided to really do my due diligence in research (research is basically my job now, heh). I concluded that it was a reasonable hypothesis and worth exploring. I decided to see a psychiatrist and ask, at least for the closure. The first psychiatrist I talked to literally shut me down within 30 seconds of our meeting - he said "I'm not going to lie; if a smart college kid like you comes in here and tells me they have ADHD I'm immediately suspicious. If you got this far you probably don't have ADHD." That really stuck with me. Of course as a scientist I really value and trust the opinions of doctors so even though I felt like his opinion was pretty biased, maybe there was some basis. Maybe I actually just needed to develop more willpower and I was using this ADHD idea as an excuse for my laziness. His wording scared me too... do I sound like a drug-seeker or something by simply asking a psychiatrist to test for ADHD? I had been seeing a therapist for a while, and brought up all of this. he highly encouraged me to get a second opinion - I also found out that the psychiatrist I went to was fired because many other patients had complained about him - this led to me finding another psychiatrist that actually gave me a chance and listened. A month ago I was diagnosed with ADHD and when I found out I just had an uncontrollable fit of tears (mostly joy? but too many emotions to process tbh) - since then I feel like my world has turned upside-down (for the better?). I'm on a relatively low dose of vyvanse (20mg) but am still amazed at how much of a difference it is making (I know ADHD is a neurochemical imbalance so it makes sense, but I'm still in shock). The best way I can describe it is I have far more impulse control, meaning I can kind of just focus on things at a level "7" instead of a level 0 or 10 if that makes sense? But (and I guess this is the main part of my post) oh my goodness there are so many "aha"/"eureka" moments I am experiencing when considering past events in my life that now make so much more sense with a diagnosis. On one hand I am filled with joy that there is so much clarity. I have been re-implementing a lot of the productivity/focus tools that I tried in the past (but at the time felt like they were ineffective) to great success. I had this severe fear that my whole life I'd either have to work at a level "0" or "10" with no in-betweens but now I feel like I could actually hold a 9-5 job and be functional. However on the other hand I am also filled with so much anger and resentment due to how long it took to get diagnosed and feeling gaslit the entire time. I'm upset at the psychiatrist who immediately dismissed me without even listening, I'm upset that I spent so many weekends not hanging out with friends because I needed to get stuff done, only to be an unfocused mess and get 0 work done (which felt *terrible*), I'm upset that I've wasted so much potential in my career, I'm upset that my coping mechanisms were so mentally taxing / destructive yet felt necessary to adapt to my circumstances at the time, and I'm upset that so many self-esteem issues developed as a result of not being diagnosed for so long (its one thing to realize that maybe the foundation of a self-esteem issue is untrue, but after so many years these things are embedded into your psyche and difficult to work through).

I know this is a huge word dump - and I am going to weekly therapy to work through all of this, but I'm really curious if anyone else in the community has had similar experiences... struggling to get a diagnosis, self-doubt, recovering self-esteem, post-diagnosis frustration, etc. It feels like even after getting the right medication that fills the exact hole that was missing in my neurochemistry, there is still a mountain of psychological work to be done because of all the years of unhealthy coping mechanisms and self-esteem issues. It is just so much to process. I think my experience with the first psychiatrist led to a ton of self-doubt, so hearing other people's experiences that are similar to my own is very comforting.

I look forward to reading about your experiences - cheers!

28 Replies

Hi and welcome. I am also new here. I recognize a lot of my own story in what you are saying. Its great that you persisted. I needed even longer to find out, i am a postdoc already. Its hard to swallow. Lets both try our best to let go of the grief and anger about past strugles and missed opportunities and enjoy whats ahead.

Hi ju-eun, Im glad you could relate to pieces of my story! I am so grateful for my therapist because I wouldn't have done all the research or reached out to a second psychiatrist without his encouragement. I just wonder how many others out there are in similar scenarios. You mention you're in academia - I feel like it is an especially difficult environment as I'm sure you know it is extremely competitive and almost everyone has some level of imposter syndrome. I think imposter syndrome is amplified by the self esteem issues that living with undiagnosed adhd can bring. I agree that we must enjoy what is ahead - I am so hopeful for the future now. I just need to process the grief first before I feel like I can move on. Thanks for your response.

Yes, i also have a great therapist, would not have made it so far without them. I am not sure about academia though. Its competitive, yes. And when we adhd people are worn down by long, boring meetings and by unsuccessfully trying to apply advice from neurotypical supervisors and colleagues, it can seem like a hostile place. But that is also exactly what you get in corporate jobs. Academia, in contrast, gives you so much freedom, intellectually and time management wise to do your thing. As we never run out of ideas, and we can do so much work when hyperfocussed, we have a great advantage. Also, many students love us, because we just get their struggles. I am starting to realize that i have too cautiously played the academic game, being too hesitant to accommodate it to my strenghts and weaknesses. So i am now determined to change that. Does that sound familiar to you?

For me the structure of industry made it much easier to do work. Sure I can hyper focus if the work is interesting but my research is quite multi disciplinary and there are parts I enjoy a lot and others I don't - also some parts of research are much less stimulating than others imo (eg figure making or writing). No project is 100% stimulating from start to finish. I found the freedom difficult for me because I'd start up a bunch of projects, work on the interesting part, and then fine myself unable to finish it (all the boring parts), then move onto the next. (reminds me there was this cartoon Jimmy neutron I watched as a kid with a scientist who kinda seemed like he had adhd haha, everything was finished 90%) I actually kind of agree with you that adhd can have advantages, for example in the early stages of research you need to read around, be creative, come up with novel ideas, etc. But all science has its moments where you just gotta crack down, focus, and just put in the hours doing some boring work (unless you trick some undergrads into helping you :P haha).

The absence of deadlines also makes graduate school difficult for me. I tried so many tricks like self imposing deadlines but it doesn't give that adrenaline rush due to the possibility of failure and thus the boring takes are still extremely difficult. Sleep deprivation actually tended to help because your mind is more quiet, and I'd actually (embarrassing to say) try to pinch myself really hard or slap my own face just go get some level of dopamine to push through boring tasks. Also the intellectual freedom is sometimes difficult because I find myself obsessing over every detail instead of just getting it done - I think the fact that papers are "immortalized" in a sense makes me really worried about getting everything absolutely perfect. I could definitely see how someone with adhd could thrive in grad school - however it wasn't working for me at all. I burnt out from years of terrible coping mechanisms throughout undergrad/grad and once I realized how terrible they were I refused to go back. It was then I realized my brain refused to cooperate without its stimuli (took me 3 years to understand this - I was very confused but mostly thought I was just a lazy piece of shit). Medication really opened my eyes to the possibility of some normalacy in my work and all I can say is I'm so grateful (although academia is more difficult for me I don't think I would've survived long in industry either). I'm still processing and I just tear up each time I think about it (tears of joy 😊).

I'm glad you have a good therapist! I am just recently having more conversations with my therapist about adhd and I'm not really too sure how treatment modalities like cbt can help with adhd symptoms (I'm pretty sure #1 thing is just medication since it's fundamentally a neuro chemical imbalance? ), but for sure cbt can help challenge narratives built up during undiagnosed years that lead to self esteem issues. I know this post is super long but I hope you don't mind me asking, was there any exercises or tools you worked through with your therapist that you found really helpful in either managing adhd or processing the late diagnosis? Thanks for your detailed reply it is nice to hear from another person in academia.

I know exactly what you are talking about. But academia gets better after receiving the PhD, i think. Not right away, after a while. As a postdoc you have so much experience you can make use of and you feel more confident when taking decisions, also because people treat you with more respect. That takes away so much of the stress and anxiety.

What you describe seems to me like the "learning years" that also non adhd people find challenging. I am by no means saying that my life is all sunshine now, but its not what the thesis whisperer calls the valley of shit anymore.

And yes, industry jobs have advantages for us. But can they accomodate your free spirit? Your critical thinking? I guess it depends on the area, but i fear the narrowmindedness of bosses and clients i had when working outside of academia. So i am determined to find workarounds for boring or overwhelming tasks.

I have my therapist since a few years, but the diagnosis is rather recent (adhd is not commonly considered in my country). They supported me in taking action, changing my ways, working through past trauma. So everything you should start doing after you receive the diagnosis... i guess this is why i am so optimistic that i will also find solutions for everything that does not work well yet.

Let us know what your therapist comes up with 😄

Welcome to the crew luv_math_and_cats.

I have been on this forum for about 3 months and after reading daily posts I can assure you, most of us have dealt with similar challenges that you have.

I have heard people say no two people are the same, however while that may be true when trying to find the perfect medication, it is not true when it comes to our ADHD struggles.

It took me a full year after my son way diagnosed to even consider, he actually got it from me. Growing up I was disorganized, always late, constantly over talked others, procrastinating constantly, frequently lost items, indecisive, feared setting appointments, functioned off of impulse. All the signs were there but like you after reading all the self help books I thought I could just somehow work harder.

I completely understand when you wrote about not spending time with friends on the weekend, I thought weekends were for cleaning. Monday through Friday I would throw all the clothes out my closet looking for something clean to wear, rip my house apart searching for my keys and on the weekends I would spend the whole time cleaning up. Thankfully now I live more of a minimalist life style, I throw away as much as I can to cut down on the clutter.

When attempting to speak with my doctor he told me it was probably anxiety, instead of ADHD. I have to remember to schedule 5 follow up phone calls with different doctors fill out numerous forms and questionnaire until finally 4 months later I received a diagnosis of ADHD. This forum educated me on the hesitation Doctors have to prescribe to college students, so I was sure to not mention that I started college. I understand the concern because of how addictive this medication can be and unfortunately become so many people abuse it, those of us who truly need it have to jump through hoops to prove we are being truthful.

I think it's wonderful you are seeing a counselor, ADHD has brought on a lot of self esteem issues that I am still trying to overcome.

Honestly for today I am looking forward to the future, when I was first diagnosed I spent so much time feeling sorry for my childhood. I spent so many nights feeling ashamed and sad that I was different.

Being a part of this forum reading post like yours inspires me that I don't have to allow this to hold me back. You have accomplished so much in your 20's, yes you had to work harder but that is what separates you from the rest, you have demonstrated that even when things are hard you still give your all. Congratulations on the graduate program that is a huge accomplishment to take on. Reading your post I can tell you are someone who has resilience and passion for what you do. Keep up the great work 👍

Hi Khyson2019. The part you mentioned about how ADHD can affect home life really rings true for me - I think so many things felt so normalized that it wasn't until I started reading about what exactly adhd was I realized how pervasive it is in every aspect of life. Also the part about your son - I understand adhd is very much a genetic disorder and in my situation I am the son. I actually see a lot of the same signs in my father as myself (level 0 or level 10 working, using stress as a catalyst for work, [Hey turns out, and I'm not surprised, many workaholics have adhd apparently] hyper fixation) and do wonder if he has adhd as well. Like I said though my family is somewhat medicine-averse so I don't see myself convincing him anytime soon lol. I really appreciate the kind words and it brings me hope to see you are in a better place since your diagnosis. Thanks for your detailed response!

On that note, my daughter is ADHD, diagnosed as a child, she's 26 now, duh, I should have known then instead of figuring it out 10 years later and my father is 100 per cent ADD, didn't realize it until my diagnosis as well.

What a sh*tty doctor! I'm so sorry you had to experience that. I saw my primary care doctor for ADHD first who was quick to prescribe adderall. I came back telling him it didn't really seem to help and that I was curious about trying IR boosters because I've read they were effective, he said IR doesnt work and that I probably don't have ADHD. That's when I went to a psychatrist who validated me and explained that different medications work for different people. I tried about 4 different types of meds, but the punchline is that what I'm taking now and is working is Adderall with IR boosters.

I know your frustration, and I know the anger and sadness. I saw someone on here post how the journey to a diagnosis is kind of like the stages of grief. Denial: Oh, I probably don't have ADHD... other people have it so much worse..., Anger: I totally have it and why did I waste my whole life without realizing it. Bargaining: Maybe if I just adopt all these practices to hide it no will be able to tell and maybe I don't need the medication because I have been successful without it...., Depression: For me personally this is the feeling that despite a diagnosis I still have a long way to go to "fix" my low self-esteem, anxiety, fear of rejection (RAD), and other problems caused by ADHD that medication can't fix. I'm still in the depression state. But it's getting better knowing I have some sort of explanation rather than the helplessness of "what is wrong with me??". Some days are harder than others, but be gentle with yourself. Your body and brain are working so hard for you! We've been worn down for years because the world doesn't see how fricken hard we have to work just to keep up. But a diagnosis gives us the opportunity to start to heal our wounds. I think the best we can do is be amazed at how much we have accomplished despite having all odds against us! All the love and best of luck on your journey.

Rsd blew my mind when I read about it. I've been labeled by family and friends as "overly emotional" and I had so many times I'd tear up over small to moderate criticisms of me. At some level I realized it was an inappropriate response (especially in public), but I could not control it. I remember my dad taking me to toast masters to help overcome my fears and I tried to say something but just broke down sobbing after a couple sentences. I'm kind of curious about how different medications might have different effects. Idk if you have experience with vyvanse but I feel like even though it should last "14 hours" by the +8 hour mark I feel like I'm crashing already (I'm only on 20mg though). Do you take boosters as needed or just to extend your coverage? I feel like my psych would be suspicious (it was already kind of a struggle to get vyvanse subscribed lol)

I felt the same way when I learned about RSD!!! I was a marketing/art major in college with naturally led to a lot of class critiques. I enjoyed getting feedback that was helpful but in the moment I’d have to physically hold my breath, smile and nod just so I wouldn’t get super defensive and start sobbing lol.

I was on Vyvanse for a few weeks, I started at 30mg. I was so hopeful because it was also hard for me to get it. My psych says that since its name brand, typically they want you to try as many other stims before so insurance is more hesitant about it. But I hated it. I thought I liked it the first few days during the intense focus periods, until I found the focus counterproductive by making me really antsy and even more distracted, overall just felt way too intense. I also noticed I was crashing after 4-5 hours which was super frustrating, I think part of it was it was hard for me to eat a big breakfast before taking it. Also side note- consuming vitamin C an hour before or after taking ur stims reduces the effectiveness! But I had to be sooo incredibly conscious of my eating, sleeping and hydration to have somewhat managable irritation levels & comedowns. I assume my metabolism is fast which is why the comedowns were quick and intense. I was having complete meltdowns but I thought the “focus” I felt meant it was doing something helpful so I didn’t want to give up on it. I actually first started boosters after asking my psych if that was something that could help comedowns, so we started 2.5mg IR to help me ease off of the vyvanse. It was so hard to coordinate bc sometimes I would miss the timing and get 10 min of the crash but then the IR would kick in and it’d be like a switch. But when I timed it right, it did help. After I was on vyvanse for a while I started to notice myself not having those hyper focus moments, but I was zoning out and being super spacey/zombie like which signalled to me vyvanse just did not like me hahaha.

The main thing i took away though was that when i would take the IR boosters even at low levels, i had the “putting on glasses” moment and realized that was what i should be feeling like with medication. I had tried IR on its own before, but didn’t feel the same effect & got really bad mood swings, so we decided to get me on Adderall XR 15mgv(since i had little side effects from that but also didnt do a lot on its own) to act as a base and then take IR when I want to be in that ideal state. I’m still trying to keep the IR doses low since it does start giving me mood swings if I take over 2.5mg, but it works for me when I need it too!

So to finally answer your question it was to ease comedowns on vyvanse / which also helped extend it, and now I take it when I need. I think you could totally bring up a booster to extend, although for me, if I took the booster after 4pm it was like impossible to sleep at night. Melatonin helped tho. Also if you are having noticeable crashes then give that as an argument as well! Also btw going up in dose doesn’t necessarily translate to longer acting. Learned that the hard way by trying vyvanse 40mg for 3 days. Bad news 😂

Sorry for the lengthy response! Let me know how it goes if you remember/want to share 🤗

Hey humble-rasberry,

Thanks again for your detailed reply! TBH I am pretty nervous to ask my psych about IR medication because I feel like I'll just get labeled as a drug-seeker lol. But I'm glad you found something that works for you! Maybe I can bring it up in the future if I find that just vyvanse alone isn't working so well, but for now I will probably just stick to XR until I understand my body/brain better. I had that same "putting on glasses" feeling the first few days on vyvanse (20mg) but now after a couple weeks I feel a lot of symptoms aren't as subdued as before, I'm not sure if this is a sign that the dosage is too low (I'm like 230 lbs post-quaratine haha)? I understand that as a stimulant your body will develop a tolerance, but I'm assuming that even with a tolerance, stimulants will still work (like, I can drink coffee even after years of drinking coffee and it still has a noticeable affect vs zero caffeine consumption?)

I'm kind of curious about the possibility of adding Straterra or some other non-stimulant in as well. I read some studies that Straterra + a stimulant performed really well and helped a lot with evening crashes. Straterra made me very sleepy but maybe combined with a stimulant they kind of balance each other out? How did you know that 40mg vyvanse was too much? Did you become more spaced-out/emotionless? I'm still trying to understand how to know when the dosage is right. Also I don't know if you are a coffee drinker (I love coffee) I've been trying to experiment with caffeine usage - I noticed in the mornings I was taking my medicine + coffee I was crashing consistently around +6h but if I take my caffeine a little bit after then the caffeine crash isn't happening at the same time as vyvanse comedown (I know the official webiste says 14h but I'm definitely crashing after around 6-8 hours pretty consistently).

Also I'm not sure how long ago you were diagnosed but I'm kind of curious, as someone who has more experience do you feel like there were any adverse side effects to long term stimulant usage (either IR or XR)? I feel like the benefits have outweighed any downsides (that I've experienced so far) dozens of times over (small sidenote: I used to have uncontrollable drowsiness in response to boring things, to the point where even if I was in a very important class I would just knock out even with good sleep + lots of caffeine lol, or if I had a task that I *had* to do but wasn't stimulating I'd instantly feel like taking a nap... I'm not sure if this is a common experience among others with ADHD?) but my scope of experience is a relatively short time-frame.

Thanks!

Hey I’m sorry this is a super late response! Despite having a decent med combo I still have awful habits of procrastinating responses lol. Honestly I still have a lot to figure out with my own medication. Somedays its perfect and others I don’t feel a thing. I try to not take it over weekends or days where I don’t have that much work to do in hopes my tolerance doesn’t get too bad haha.

But to answer your questions! I was diagnosed in the beginning of the year so I’m still very new to this too. I didnt figure out the good combo until 4 or 5 months in and sometimes I’m still unsure if it is my perfect dose.

Vyvanse was super weird for me. I also was like you and felt that glasses on feeling the first few days, but ultimately just think that was just a hyperfocus feeling from stimulants in general. And same as you it felt like it completely flipped after that and did nothing. I noticed I was zoning out a lot and could not concentrate for the life of me. I think I noticed the dose was too high because of the intense crashes, and they started turning into sensory meltdowns. Actually this fact made me consider strattera as well because I thought maybe stimulants were too much since I have pretty bad sensory processoring. But I just know my dose rn works and honestly I’ve been a little traumatized after switching between so many types of medications that I feel like I just want a break lol!

I haven’t noticed any long term effects so far, I know that quitting stimulants can have side effects of depression, so I think that’s one thing I’ve been trying to navigate since I already had depression before starting stimulants as well.

I also love coffee like you, but noticed when I had caffeine on vyvanse days it would make me even more irritated and more wired feeling. But I was crashing after 4ish hours so I understand the frustration!

The last thing I’ll add is about the putting on glasses, i’m not sure how to describe it but that feeling for me was very subtle, but in a big way. Vyvanse made me focused like crazy but it didn’t feel that same way, for me it was more of a gentle nudge and my head felt like it had settled down. I actually remember the first time trying it I was with my friend and just said to her “Wait I feel.. normal” which just kind of made me laugh because wtf even is normal!! I don’t really have the same reaction anymore but it kind of just reacts like you described with coffee. Some days coffee helps a lot and somedays its just kinda bleh. But without coffee its a tired slump so your analogy is spot on! (Also side note: I had a huge napping problem which adderall has majorly helped with but I have to remember it is a stimulant so of course it would help lol).

Also since it’s been like a month I’d love to hear if there have been any changes!!!

I relate to you 100%

Makes me glad to hear that. I'm happy we have this community. I don't know anyone else with adhd so it is quite validating and comforting. Cheers!

struggling to get a diagnosis, self-doubt, recovering self-esteem, post-diagnosis frustration, etc.....

.....there is still a mountain of psychological work to be done because of all the years of unhealthy coping mechanisms and self-esteem issues

Yes all of this!!!

@ 61 and and a diagnosis fairly recently, so you can imagine much "water under the bridge" has flowed.

I too am in a process of mourning my past but trying to look forwards more than backwards and trying not getting too locked into a feeling sorry for myself.

I had a 2-3 year phase of therapy to help me with a personality disordered (now thankfully ex) wife. Via therapy I found the courage to end the marriage. (She is undiagnosed but has enough behaviors and childhood history to indicate Borderline Personality Disorder or something else that makes her hostile and totally unbearable)

My current partner observes that the ex uses the fact that I can get bamboozled by calandar dates to rip me off in negotiations for when I have custody of the kids during holidays or whenever she wants to change the schedual (a lot) Luckily my partner is a great assistance (She has a natural talent for logistics!!! So a great catch)

At presnt it looks like I won't be getting stimulant meds. So I am looking to fill all the leaky holes in my “lifeboat” with non pharma methods. Diet, supliments, meditation, mindfulness, and therapy.

This time round I can approach therapy minus the living hell I had of living with someone with BPD.

I am too much of a friend with my last counsellor now to continue with him! We both agreed recently to just be friends going forwards. He's a pal now.

So I need to find a new therapist. I feel it needs to be a therapist and not an “adhd coach”.

So yes like you, I have a (longer!) past that still needs dealing with. If I were you I would study up on Rejection Sensitive Dysphoria.

My last therapist described retracing your past life and all it’s issues along the way - as a “reparative narrative”. So ‘hovering’ like a helicopter over your life’s journey , looking at it from above, observing and philosophically thinking about it gently over time.

I think you have started your reparative narrative. Keep going!

I am on a 2nd phase of continuing with mine. This time I will retrace and view my life’s journey (minus the hellish wife) through a newer ADHD aware lens

Good luck to us all.

Wow thanks for sharing so much detail Stonesfan,

I have a close family friend where one of the parents has BPD and oh my goodness it just sounded like hell to live through. I think several of the children are traumatized and are going through the process of healing now. I think nowadays, acknowledging and seeking help for mental health disorders is a lot more normalized - I really feel sympathy towards those who continue on living undiagnosed because I think after living with an undiagnosed mental disorder for years and years you start to internalize it (this is just how I am, I always fuck things up, etc.). I'm so sorry you had to go through that but it truly makes me happy to hear you are in a better place now!

I really like that idea of a "reparative narrative" - I think you're right that what I'm doing now (and what a lot of us here are doing) through introspection and these forum posts is kind of like this "reparative narrative".

I'm very curious at your approaches to coping with ADHD without pharmaceutical treatment! In my own journey I have bought a ton of books on willpower/motivation, tried daily meditation/mindfulness, therapy, etc. but I honestly got kind of depressed because it felt like all my efforts were a level 8 but the results I was getting was a level 2. Now that I am on medication I am trying to reincorporate many of those practices and have found them to be helpful but I'll be honest nothing has been as helpful as just taking my medication (from my understanding of the research ADHD is definitely a neurochemical imbalance so it kind of makes sense?...). The (non-medicine) thing I have probably found the most helpful is healing all the self-esteem issues from a lifetime of beating myself up. I don't know if this sounds familiar to you but this is kind of how my mental thought cycle would go on a day-to-day basis:

1) Try to accomplish task X (something boring)

2) One or more of the following would happen

2a) Get side-tracked after a couple minutes

2b) Feel an overwhelming fatigue to the point I can't keep my eyes open

2c) Just kind of zone out

3) Get frustrated / beat myself up that I wasn't able to focus on X, try again

4) Repeat 1-3 for an hour or a few hours and then get depressed, start impulsively doing things that give dopamine quickly (porn, video games, shopping, etc.)

5) Feel like shit/confused/frustrated (thinking, what is wrong with me?)

I've gone through this cycle tens of thousands of times and each time I would feel super guilty about it. After a while I wouldn't even want to start 1) because I was afraid of inevitable 2-5 that would follow. Slowly coming to the realization that maybe it was just a chemical imbalance this whole time makes me feel a lot more positive about myself and a lot more motivated to start 1) (and now, I'm able to follow through and finish... sometimes! :)). But that hesitance to even start is still there and I think I need to break free from the "fear of the cycle".

You mentioned diet/supplements that help do you mind sharing? I started eating less carbs recently because I already get lots of daytime fatigue from boring tasks :). I'm kind of curious if anyone has experience with keto diets or I guess just any specific diets that help with ADHD.

Almost everything you are saying is what I'm dealing with right now. I'm 42 and just realized that all of my struggles have been from ADHD. I have never been hyperactive, so I and my family didn't see it, even though there are plenty of people in the family that do have it. We always assumed my fatigue, lack of focus, and other behaviors were from side effects of my epilepsy, medication, and family dysfunction. Last year I was listening to my friend talk about her ADHD and I almost started crying, because she was describing my everyday life. I then went to my family and they said having it would explain so much. I've always struggled with my relationships and felt so different, assuming it was my epilepsy. Anyways, it took me 10 years to get my bachelor's degree and I start on my master's in a couple of weeks. My neurologist referred me to a neuropsychologist for cognitive testing. On the day of the test which took 4 hours, I was greeted by the psychologist telling me to not "lay it on thick", which is basically saying he expected me to be a drug seeker, he then reported that I just had anxiety and was reaching beyond my capabilities. I was devastated when I got the results in the mail. But, I didn't give up and when I went to my annual visit with my neurologist, I told her that I thought I was being dismissed. She looked at the report in more detail and agreed that the test results showed signs of ADHD and that anxiety is one of the symptoms of ADHD. She prescribed Strattera to start because she wanted to be careful with my epilepsy. It made me extremely fatigued and I requested to try something else. I don't understand why they are so hesitant to just go with Adderall or a common med since they are proven so effective? I'm looking into finding a psychiatrist, but neurologists are considered one of the qualified doctors for treating ADHD. It's pretty ironic that making and keeping doctor appointments are one of the struggles for us, yet that is what we have to fight to do to get the therapy to help us accomplish this type of stuff. On the other hand, I can hyperfocus and spend half a day researching ADHD, which also frustrates me because I now feel like an expert, haha. I expect to have a relief meltdown once I'm actually treated...lol I've felt so defeated through this process, but also have hope for the first time in my life, that I can feel somewhat normal and not feel like I'm climbing a mountain every day to do what others do easily. I joined this group for support and to support others, so hopefully, my story makes you feel a little better.

Hi her42,

Something you said really spoke out to me - I'm no doctor and I may be making assumptions but it just seemed really similar to my own experience so I wanted to point it out.

"I have never been hyperactive, so I and my family didn't see it...On the other hand, I can hyperfocus and spend half a day researching ADHD"

I feel like there is this really common misconception that having ADHD means you are a belligerent, misbehaving child (e.g. standing up, running around when you're not supposed to, being hyperactive at inapporpriate times, speaking over others). But just because a child doesn't exhibit these symptoms that doesn't meant they don't have ADHD - they might even be have some hyperactivity but due to how they are raised they don't express it in ways that would be noticeable (this is especially true as we mature into adults and learn to control ourselves in social settings). As an example of this, I'm reading this book by Thomas Brown on ADHD and he mentions a statistic that even though the ratio of boys:girls with ADHD is about 3:1 the ratio of diagnoses for boys:girls is 10:1 (as children) - this is probably due to the fact that due to gender roles girls are taught to be more obedient/calm/non-disruptive, leading to a shocking under-diagnosis of females (I think he mentioned that as we become adults, most people are self-referring themselves to a psychiatrist, so the amount of male:female being diagnosed is closer to the actual hypothesized ratio of disorders).

Anyways, I was raised in a really conservative strict household and I think I behaved pretty well as a kid. When I was looking into getting a diagnosis I was thinking "yeah if anything I am definitely just ADHD inattentive type because I'm not running around when I'm not supposed to" (literally the official forms they have you fill out have questions like this, they are obviously geared towards children and don't consider how well behaved the child was) - but upon further reflection I realized that 1) I had gotten into a moderate depression due to living undiagnosed for so long, 2) I actually *do* hyperfocus a lot, just only on things that I am interested in (this is why attention deficit disorder is a dumb name - it is an attention disregulation disorder!). Upon introspection I realized wow I could literally focus on code that I was interested in, a cool video game, or researching ADHD for an entire half day without even realizing that I had to eat food/drink water/use the bathroom.

I don't know if this same scenario applies to you, but it was kind of a big realization for me, recognizing that being well-behaved/quiet as a child/adolescent/adult did not indicate the absence of a hyperactive mind.

For me, I think it all makes a lot more sense in the context of neurotransmitter deficiencies. If we are deficient in dopamine/norepinephrine and are trying to do a boring task which does not fill our stores, our mind will wander to other sorts of things in an effort to try and fill the stores. When we are "hyperfocused" on something of interest, our brain is like "oh yeah we are finally filling those stores up, lets not get sidetracked or we'll go back to being deficient again". Stimulant medications release more dopamien/norepinephrine and also help slow down the re-uptake, meaning more of these neurotransmitters are floating around at the synapses. In the case of inattentiveness, our mind will not tend to wander around as much because the stores are already filled, and in the case of hyperfixation we have more control in stopping because if we stop its not like we're losing our primary source of neurotransmitters. I feel like a lot of this boils down to "impulse control". Without medication I almost felt like a "slave to my impulses" and because I was so frustrated/confused about it I actually researched a ton on the philosophy, psychology, and physics of free will (tldr; we really have no idea whether we do or don't, but you can certainly feel like you have more or less free will :P). The best way I can describe medication is now I feel like I have more freedom in my actions. If I know I need to get something done even though its boring, it is a little easier to push through and not have my brain just shut off, if I realize I am hyperfixated on something I have more control over deciding to stop or not.

"I joined this group for support and to support others, so hopefully, my story makes you feel a little better."

It certainly does - I need to pace myself because all of this is mentally exhausting and I still have to do work heh, but reading all of your folks stories and seeing so many similarities is very validating and has been a big part of my healing process. So thank you!

I don't have time to proofread my post at the moment (sorry its a rambly mess haha) but let me know if anything is unclear!

Hey! I'm new here as well, joined today, the ADD forum I belonged to is gone, thought it was only a few years since I've been on but its been almost a decade. Everything that you experienced and are experiencing is very similar to what I experienced, only I was diagnosed 10 years later in life. The first psychiatrist is an idiot, it amazes me how many people are in that profession that don't understand a lick about ADHD, mind boggling. Here is my advice, you have to let go of the "past you" not forget, rather move on. Believe me I know it's hard and your emotions are raw right now, it gets better with time. Seeing a therapist was a great decision, I wish I had figured that out earlier than this year, it really helps to talk to someone. Onward and upward friend!

Hi Jace1973,

Thank you for your reply and sorry it took so long to get to you. Yeah I am still pretty upset about that psychiatrist but I do feel a little bit better that he got fired (some sort of validation lol).

"Here is my advice, you have to let go of the "past you" not forget, rather move on. Believe me I know it's hard and your emotions are raw right now, it gets better with time."

This is really good advice but I think I misunderstood it at first... I am realizing that even though medication is very helpful my natural tendencies are still towards inattentiveness/hyperfixation. I wasted so much time the other day when there was important things to get done (I think I'm building a tolerance to my medication?) but instead of beating myself up about it like I would in the past I am trying to forgive myself (but with the understanding that I should still try to do better in the future). I guess what I mean to say is that when I first started medication I was so blown away - I thought my symptoms would be 80-100% gone, but realistically we still have adhd tendencies (now it feels like my symptoms are 40-50% gone?) they are just subdued - so the "past you" that we should be trying to move on from is not the "adhd you" but rather the "low self-esteem / frustrated / confused undiagnosed you"? I hope this makes sense, haha.

Welcome to the forum and I just love chatting with people like you that have been in a similar situation but are at a later stage in life... it brings me so much hope, which in the depths of undiagnosed frustration was the thing I lacked the most.

"past you" that we should be trying to move on from is not the "adhd you" but rather the "low self-esteem / frustrated / confused undiagnosed you"? Exactly! The tolerance thing is real, I went through a number of doses to low and then too high before settling on the correct dose for me.

Hi Jace do you mind sharing how you were able to know what was "too low" and "too high"? I have a feeling I'm on the lower side but don't actually know what to even look for. My symptoms have increased but I don't know if it is because of tolerance, the loss of novelty, mood, or something else? Thanks a bunch

Hi OP here. I just wanna say I've read everyone's posts (several of them multiple times over) and I'm so thankful for your detailed and thoughtful replies. It gives me so much perspective and I am learning so many new things (I learned about rsd today which explains a big chunk of my personality). I'm trying to respond to everyone but to be honest, even though processing of the experience is very healing, it is also so exhausting (sheesh, just the realization of what rsd is made me challenge a narrative others and myself have said so many times "I'm too emotional/sensitive" aaaand trying to process that ruined my productivity for the rest of the day 😬) - so it'll take some time heh.

OMG, some hilarious typos in my post above - now fixed. (I think...🥴)

Haha no worries - most of my posts here (or just, my writing in general) are littered with typos and are pretty scattered in thought (also I use too many parentheses... too many side thoughts that I don't know how to integrate into the main sentence gracefully :P). Thanks for updating your post

Welcome!! I'm so sorry you had to go through such a difficult path (so mad that that psychiatrist! Although I'm still a high school senior who was recently diagnosed at the start of this year, your story hits so close to home- especially the part "I'm not going to lie; if a smart college kid like you comes in here and tells me they have ADHD I'm immediately suspicious. If you got this far you probably don't have ADHD."

Even in school, I've been trying to get learning support but because I've had a pretty good record in years prior (before APs/ IBs/ and honors) the counselors and administration have shown little interest in considering it despite receiving emails from my psychiatrist. And even with my psychiatrist, I still remember him saying "but you had a high GPA compared to some!" in a session...

I am so glad I got to hear your story because it allowed me to realize that my struggles are still valid even if I don't fit the ADHD stereotypes (like dropping out or completely failing). Moreover, hearing about your journey beyond high school and into college and adulthood gives me a lot of hope that I can do it too. Thank you! And best of luck on your journey!

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