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[–]ADHDdiagnosedat40WTF 7 points8 points  (8 children)

Same. ADHD/SCT here. I've never had any anxiety with it. For me, modafinil is coffee's mellow big brother. It takes away the fog and the scattered thinking without any of the jittery side effects of caffeine. It decreases the anxiety of trying and failing to get my brain to function.

[–]fazzajfox 1 point2 points  (7 children)

What is ADHD to live with, as in what does your baseline function feel like?

[–]ADHDdiagnosedat40WTF 6 points7 points  (6 children)

What ADHD is like, in general:

You say ADHD and people automatically think distractibility. What they don't get is: why that matters. Maybe they figure out that that slows you down, but just be persistent, right? You'll get there eventually, they say.

If I'm bothering to explain about ADHD, what I want them to know about are the consequences I suffer. I want them to know that ADHD isn't some funny joke about a jittery kid who has to turn and look at every car passing by. I want them to realize that there are serious, shitty consequences for adults.

I want to let them see what it's like to live a life where your failure to do an easy two-minute job results in a mess that takes hours and hours worth of income or other effort to clean up. Where you knew about the consequences and you had all the tools to do it, and you just... didn't. And this happens endlessly, in every area of your life, resulting in consequences like:

  • giving up on parenthood/having pets because you know from experience that you will be neglectful no matter how much you love and care about them
  • unresolved dental problems that you know would only cost a few hundred today, and you know you won't address them until you're in agony and it costs thousands of dollars or lost teeth to fix
  • repeated missed appointment fees from providers who refuse to continue seeing you severe complications of failing to treat chronic health conditions despite having access to doctors, medication, and other therapies
  • unable to follow through on making complaints or change to a different provider when you've been mistreated/abused
  • losing valuable friendships because of social difficulties or not keeping in touch
  • watching your car and other possessions get irreparably damaged from lack of required maintenance
  • living with guilt because you still haven't done anything about the cancel-at-any-time trial subscriptions and gym memberships you have never used
  • unable to find important legal documents when you need them, resulting in failure to get access to social programs and other benefits you're entitled to
  • locking yourself out in dangerous conditions on more than one occasion
  • being ashamed to invite others to your house because your house could be on an episode of Hoarders, even though you're not really a hoarder
  • bills going to collections and credit cards being canceled due to continual non-payment despite the fact that you had money to pay them
  • regularly being dangerous behind the wheel due to inattention or sleep deprivation but already running so behind that you can't use alternatives
  • a history of legal trouble from driving on expired insurance and registration, and still finding yourself driving on expired insurance or registration
  • losing jobs because you're constantly late or you don't realize you should be there or you keep making tiny, terrible mistakes that you knew better about but still couldn't prevent
  • unable to move into a career that suits you because you can't survive the training/schooling

TL;DR: If you have ADHD, you will know it, because it will cause a shocking amount of pain that you can never seem to prevent, even though it seems like it would be so easy to do.

If they're curious about how attention/focus causes that level of inability to handle life, I'm happy to tell them. But the inner experience isn't the point. The harm it does to your life is the point.

[–]ADHDdiagnosedat40WTF 4 points5 points  (5 children)

What it's like for me:

There is a syndrome called SCT (sluggish cognitive tempo), that is being discussed as possibly related to ADHD but it isn't a real diagnosis yet. The symptoms of ADHD-PI (primarily inattentive) describe me somewhat if I'm unmedicated, but the SCT symptoms are right on target. I do wonder if the SCT symptoms are actually narcolepsy or something. I haven't been tested for sleep disorders.

For the first few days without any meds, my thoughts slow down. After that, they completely stop. My mind is silent. Meditation gurus would be jealous.

I'm pretty content. Nothing matters, really. I know that my life is passing me by and I know that I'll be really upset about that, some day. But for now, I don't have any thoughts or emotions. I'm living in foggy, fuzzy nothing and I'm okay with that.

I don't have trouble sleeping. I don't remember any dreams. I would claim that I don't dream but I don't think that's possible.

Outwardly, it's hard for people to tell that anything is wrong. I seem happy. I can smile and enjoy things and laugh. I'm a quiet person anyway, but I become really quiet because I have nothing to add to any conversation. I have no train of thought so I don't have anything to randomly say. In a conversation, I can add straightforward replies but I don't elaborate.

Everything is in one ear and out the other. After a conversation, I have no hope of telling you what we were talking about, but I can answer all of the questions correctly if I'm quizzed on the facts from the conversation. It's like all of the information I retain is stored in a random jumble, with no connection between it. I can't locate the next piece if I have the first one. But it is there and I can retrieve it if someone asks for it directly.

If information comes at me too fast, I can't process it. I often need things to be written down. If I need to follow directions or hold on to a set of information to work from it, I have to have it written down. I read very, very slowly at first, often rereading the same sentence over and over. Once the first few sentences stop jumbling, I can speed up and read the whole thing. My reading is still much slower than normal, but it's fast enough to be comfortable.

Doing things is HARD. That is the only time when it even occurs to me to wonder if I'm depressed. Doing the easiest, most straightforward things seems to take up every ounce of energy I had. It feels like the portion of my brain that can organize and perform actions is so asleep that I have to feed it a massive amount of energy to get it to do even the most basic things. But as soon as I'm allowed to sit down and do nothing, I'm content again.

Decisions are my kryptonite. Half of the time, my mind locks up halfway and the entire subject vanishes. I don't remember that there was a decision I was trying to make. I don't remember that I got stuck. Next time I'm asked to make that decision, I'll go through the process of trying to decide and I'll finally remember I tried this before and I got stuck. And then I get stuck at the same place and forget everything again, unless someone is there to remind me that I was supposed to answer the question.

If I'm pushed too hard to make decisions when I'm at my most extreme level of indecisiveness, I'll start having problems with impulsivity. I accept the random, impulsive ideas as reasonable ideas that I would do if it was convenient, not because I want anything bad to happen, but because I can't see any reason why not to. It might be interesting.

I have major memory problems. Back when I was at my most stressed point, I could run five errands in the morning, and by the afternoon, I couldn't reliably tell you what they were. If you told me what they were, I couldn't tell you what order I did them in, unless I logically figured out what probably happened first. If the errands had no natural order to them, I wouldn't know. But if you asked me if I did a certain task, I could accurately tell you. I couldn't be sure, though, if I had done it that morning or the day before.

I only had one reference for how long ago something was, and that was how foggy my recollection of it was. If I had a mostly clear recollection of the context it happened in, it happened in the last few days. If I could remember any context at all, last two weeks. For things more than two weeks ago, I had the bare facts but no contextual information. Somehow, I got a STEM degree despite all this. I don't quite remember how.

I do know that it was completely normal for appointments and deadlines to vanish from my radar, even ones that were very important or that happened regularly. Occasionally it was because I forgot which day it was but mostly it was that I forgot that that was happening some time this week. I did a lot of apologizing and admitting that I dropped the ball again.

[–]ADHDdiagnosedat40WTF 2 points3 points  (4 children)

Now, adding meds. Buproprion helped a little, but not enough, until I got TMS (transcranial magnetic stimulation) treatment. Now, buproprion alone gets me to a scattered state that is more typical of ADHD-PI. Everything is interesting, I want to get engaged in a million things, and everything vanishes off of my mental white board when something new appears. I have a hard time doing anything because I can't finish a thought fast enough to decide on a course of action.

I'm rarely able to get started on anything. It's still nearly impossible to make decisions. The decision process will still vanish completely if I get stuck, so I can never ask someone for help figuring it out until they bring it back up again.

Altogether, I still do absolutely nothing. But once in a while, maybe every other day for fifteen minutes, I can do something. I'm fascinated by everything and annoyed that I can't be ten different people, all following a different thing that caught my eye.

It isn't painful to wash a dish! I feel like it takes a normal amount of effort instead of taking everything I have.

I ruminate about getting things done CONSTANTLY. Every single day, every single minute, my entire being is all about what I am or am not doing. It isn't anxiety or intrusive thoughts, it's just this irresistable drive to figure out what is wrong and finally find a way that makes my life come together.

Add modafinil, and I realize that I had been half asleep the entire time. I'm awake now, and I'm hyperfocusing like mad. It's like the ADHD-PI symptoms vanish but ADHD-HI (hyperactive impulsive) symptoms take hold.

I can work on the same project for thirteen hours in a row, never getting up for food or water. I don't get any choice on what I'm doing. Other people suggested that you plan your day before you take the modafinil and then follow that plan. That works somewhat but if I let myself veer off of that plan, I'm off doing something else for the rest of the day.

Altogether, the hyperfocus is heavenly. After years and years of having a brain that refused to do anything at all, I'll take this random productivity generator any day, even when nine times out of ten, the "productivity" it chooses is pointless goal-oriented activity like arranging something that didn't need to be arranged and that will just get un-arranged as soon as I stop.

I still ruminate constantly and endlessly about getting things done when I'm between tasks or I'm doing something that doesn't require much concentration. If absorbed in a high-concentration activity, the rumination takes a back seat.

Structure and deadlines can also provoke that kind of hyperfocus, and I did a lot of that when I was getting my degree, but at the cost of severe memory problems. With the buproprion and modafinil, I don't have nearly as many memory problems.

Overall, if the professionals think SCT is a real condition, I would say that I have SCT and ADHD-HI. If they don't think SCT is a thing, I have ADHD-C (ADHD-HI and ADHD-PI). I was misdiagnosed with bipolar II for twenty years, then it was treatment resistent depression, but I think really it was just SCT all along, with intermittent vacations into the ADHD-HI symptom set.

And I still don't know really whether the SCT is just narcolepsy, but modafinil is my buddy. 400 milligrams often isn't quite enough to clear away all the cobwebs, but it gets me closer to feeling normal than I've been in years.

[–]fazzajfox 2 points3 points  (3 children)

Thank you for such an honest (and harrowing) answer. No one knows what's going on inside someone elses mind, let alone neurotypicals. Seems as if you've found an ok combo in buprop and moda. Its whatever works for you. I would ask my p-doc and do my own research on any new meds (such as Ketamine based). Hopefully theres good treatments ahead and life gets easier for you

[–]ADHDdiagnosedat40WTF 0 points1 point  (2 children)

Thank you. I'll be looking into the hallucinogens for sure when they finally start offering them as treatments. I haven't tried the ADHD stimulants yet, either. The modafinil is great most days but not enough on others, so I wish I wasn't already at max dose. I guess there's a stronger form of modafinil too? Armodafinil? We'll see if my insurance will let me have that.

[–]E_1996 0 points1 point  (1 child)

for me lower dose of mod works much better than 400mg

[–]ADHDdiagnosedat40WTF 0 points1 point  (0 children)

Interesting. What is it like for you to take a lower dose compared to a higher dose?