Self-discipline techniques that don't require habit formation or focus?
July 7, 2024 2:09 PM Subscribe
My ADHD is so severe that even with treatment, I am unable to form habits or consistently focus, which makes all the standard advice I've seen useless to me. Am I just screwed or are there any techniques that could work for someone like me?
Because people tend to be skeptical of my claim that I can't form habits: I can't even form a drug habit. I have been prescribed over a dozen different addictive drugs in my life -- opiates, benzos, and amphetamines -- and not only have never become addicted but also almost never had to consciously quit using them. I just forget to keep taking then. I'll be a week deep into physical withdrawal symptoms before it even occurs to me to try to figure out what's wrong.
I have tried putting up notes and signs and other reminders, but become blind to them after a week or two.
I have tried setting reminder alarms on my phone but will dismiss them without conscious thought. Numerous witnesses have reported seeing me look at my phone and turn the alarm off but I have zero memory of doing it.
Even asking someone with a functional habit-formation process to help me by establishing their own habit of reminding me to do something doesn't work. I've asked spouses and roommates for help over the years and they all report the same thing: I will acknowledge the reminder and assure them I am going to do the thing. But not only do I not do it, I have zero memory of the conversation.
The only thing that actually works is if they person helping me physically removes whatever I'm looking at, forces me to make eye contact and repeat back what they're reminding me to do, and then follows me around harassing me until I do the thing. So far, no one has been willing to provide this service long-term, which is completely reasonable on their part because they all report that I'm a total bitch to them about it. I have no intention or even memory of being a bitch, but given that numerous people who have never met each other report the exact same thing, I have to believe them that I am indeed behaving like that.
Meanwhile, removing all distractions doesn't help me focus on what I need to do because I am carrying multiple universes around in my head. For example, I have attempted using library study rooms on the theory that the lack of distractions will help me focus. But it turns out that even if I'm alone in a room containing nothing but a desk, a chair, a textbook, a pad of paper, and a pencil, I'll still fail to study accounting because I'm too busy thinking about how to speedrun the Enlightenment in Thedas.
I can't simply choose to stop being this way because I didn't choose to be this way to begin with. It's so out of my control that I don't even remember most of it! I'm just constantly losing large blocks of time and when I ask other people what I was doing it turns out I was on my phone or just lying in bed looking at the ceiling for hours, but I have zero memories of what I was doing or thinking about.
My autobiographical memory in general is terrible and I have to rely on other people and things like Facebook memories to reconstruct what I was doing when. Other people don't seem to struggle to remember their own lives like I do. And it is very specifically the autobiographical memory being affected, not memories in general -- I can remember academic material I studied and the plots of TV shows I watched during the same period, but I don't remember anything about my own life.
Most of my "memories" of my life are actually deductions, e.g., if I have new memories of academic knowledge and TV plots then I must have spent some time studying and watching TV. When I find things, it's not because I remember where I put them, it's because I ask myself where might I put the thing if I were putting it away right now, and then I look in those places until it turns up. Even when I find it, though, I still have zero memory of having put it there.
So I have no idea how to change behaviors that I'm not choosing and don't remember.
I do take ADHD medication and it helps a bit if I happen to be doing what I'm supposed to do when the medication kicks in. But I struggle to remember to take it consistently, and even when I remember to take it, I struggle to get myself into the correct task before it kicks in. So more often than not, all the medication does is make me hyperfixate on the wrong thing for 4 hours straight.
Has anyone else ever experienced similar challenges and if so did you ever find any solutions or coping strategies that actually work?
Because people tend to be skeptical of my claim that I can't form habits: I can't even form a drug habit. I have been prescribed over a dozen different addictive drugs in my life -- opiates, benzos, and amphetamines -- and not only have never become addicted but also almost never had to consciously quit using them. I just forget to keep taking then. I'll be a week deep into physical withdrawal symptoms before it even occurs to me to try to figure out what's wrong.
I have tried putting up notes and signs and other reminders, but become blind to them after a week or two.
I have tried setting reminder alarms on my phone but will dismiss them without conscious thought. Numerous witnesses have reported seeing me look at my phone and turn the alarm off but I have zero memory of doing it.
Even asking someone with a functional habit-formation process to help me by establishing their own habit of reminding me to do something doesn't work. I've asked spouses and roommates for help over the years and they all report the same thing: I will acknowledge the reminder and assure them I am going to do the thing. But not only do I not do it, I have zero memory of the conversation.
The only thing that actually works is if they person helping me physically removes whatever I'm looking at, forces me to make eye contact and repeat back what they're reminding me to do, and then follows me around harassing me until I do the thing. So far, no one has been willing to provide this service long-term, which is completely reasonable on their part because they all report that I'm a total bitch to them about it. I have no intention or even memory of being a bitch, but given that numerous people who have never met each other report the exact same thing, I have to believe them that I am indeed behaving like that.
Meanwhile, removing all distractions doesn't help me focus on what I need to do because I am carrying multiple universes around in my head. For example, I have attempted using library study rooms on the theory that the lack of distractions will help me focus. But it turns out that even if I'm alone in a room containing nothing but a desk, a chair, a textbook, a pad of paper, and a pencil, I'll still fail to study accounting because I'm too busy thinking about how to speedrun the Enlightenment in Thedas.
I can't simply choose to stop being this way because I didn't choose to be this way to begin with. It's so out of my control that I don't even remember most of it! I'm just constantly losing large blocks of time and when I ask other people what I was doing it turns out I was on my phone or just lying in bed looking at the ceiling for hours, but I have zero memories of what I was doing or thinking about.
My autobiographical memory in general is terrible and I have to rely on other people and things like Facebook memories to reconstruct what I was doing when. Other people don't seem to struggle to remember their own lives like I do. And it is very specifically the autobiographical memory being affected, not memories in general -- I can remember academic material I studied and the plots of TV shows I watched during the same period, but I don't remember anything about my own life.
Most of my "memories" of my life are actually deductions, e.g., if I have new memories of academic knowledge and TV plots then I must have spent some time studying and watching TV. When I find things, it's not because I remember where I put them, it's because I ask myself where might I put the thing if I were putting it away right now, and then I look in those places until it turns up. Even when I find it, though, I still have zero memory of having put it there.
So I have no idea how to change behaviors that I'm not choosing and don't remember.
I do take ADHD medication and it helps a bit if I happen to be doing what I'm supposed to do when the medication kicks in. But I struggle to remember to take it consistently, and even when I remember to take it, I struggle to get myself into the correct task before it kicks in. So more often than not, all the medication does is make me hyperfixate on the wrong thing for 4 hours straight.
Has anyone else ever experienced similar challenges and if so did you ever find any solutions or coping strategies that actually work?
Best answer: Take with a grain of salt since I don’t know you personally, but as someone with ADHD married to someone else with severe ADHD and knowing a lot of people with ADHD, this is unusual and a little concerning. I do the ‘put something down and it somehow magically vanishes’ thing a lot and forgetting the occasional conversation or similar happens now and then. Memory holes like you describe are not familiar to me and I’d consider getting that looked into, if you can.
posted by throwitawayurthegarbageman at 2:37 PM on July 7 [15 favorites]
posted by throwitawayurthegarbageman at 2:37 PM on July 7 [15 favorites]
Best answer: Yeah, I have ADHD and it does affect my memory, but some of the more extreme memory things you describe here sound like potentially a separate issue, not just a matter of degree.
posted by showbiz_liz at 2:42 PM on July 7 [2 favorites]
posted by showbiz_liz at 2:42 PM on July 7 [2 favorites]
Response by poster: Oh I forgot to mention that I've also been diagnosed with PTSD because I have all the symptoms despite not remembering what specific trauma might have caused it. Like I startle incredibly easily, have a bunch of weirdly specific anxiety attack triggers, etc. And having really poor autobiographical memory even about day-to-day boring non-traumatic stuff is apparently a common PTSD symptom.
So my PTSD symptom of not remembering anything is making it much more difficult to manage my ADHD symptoms. It's like my brain has developed a general defensive strategy of refusing to remember anything even a tiny bit uncomfortable or unpleasant, even when I would be better off remembering it.
posted by Jacqueline at 2:48 PM on July 7 [1 favorite]
So my PTSD symptom of not remembering anything is making it much more difficult to manage my ADHD symptoms. It's like my brain has developed a general defensive strategy of refusing to remember anything even a tiny bit uncomfortable or unpleasant, even when I would be better off remembering it.
posted by Jacqueline at 2:48 PM on July 7 [1 favorite]
I have an extremely food motivated cat. I take pills for anxiety and blood pressure and allergies. I feed my cat dinner at nine, which is also when I take all my pills. If I don’t take my pills, my cat will physically remind me. He steps on me, yells in my face, rubs on me, walks all over whatever I’m holding or looking at, paws at my face or my feet or whatever is sticking out of the blankets I’m under, and so-on. My partner feeds him his first meal earlier in the day but the times when I need to do that instead I always get mixed up feeling like I missed something, so I try to always drink some water or something to echo the pill taking habit.
When I’ve had medical issues requiring meds multiple times a day, I’ve set up a ton of alarms and reminders and made physical checklist calendar things for me to pay attention to - luckily, this is usually only a couple weeks like for antibiotics or pain meds during a kidney stone, so I don’t actually need to form the habit long term. Also when I’m ill my cat treats me somewhat differently.
Basically my cat is the hypothetical person you are describing except he is a cat and does not get that me taking a minute to swallow something and drink some water before opening his evening can of squishy food is actually him saving my life one pill at a time. No clue what I will do when he passes, I do plan to have pets into perpetuity though so hopefully one or the other of these future beasts will provide this service.
Obviously I’m on the far other end of this spectrum than you, I do have trouble forming habits and am probably adhd+autistic and have all kinds of neurodivergent behaviors but I’m not usually memory holing like you describe. Definitely talk to your prescribing doctor about medication adjustments and all that to see if there are ways to improve your short term retention, you know? The struggle is real.
posted by Mizu at 2:49 PM on July 7 [6 favorites]
When I’ve had medical issues requiring meds multiple times a day, I’ve set up a ton of alarms and reminders and made physical checklist calendar things for me to pay attention to - luckily, this is usually only a couple weeks like for antibiotics or pain meds during a kidney stone, so I don’t actually need to form the habit long term. Also when I’m ill my cat treats me somewhat differently.
Basically my cat is the hypothetical person you are describing except he is a cat and does not get that me taking a minute to swallow something and drink some water before opening his evening can of squishy food is actually him saving my life one pill at a time. No clue what I will do when he passes, I do plan to have pets into perpetuity though so hopefully one or the other of these future beasts will provide this service.
Obviously I’m on the far other end of this spectrum than you, I do have trouble forming habits and am probably adhd+autistic and have all kinds of neurodivergent behaviors but I’m not usually memory holing like you describe. Definitely talk to your prescribing doctor about medication adjustments and all that to see if there are ways to improve your short term retention, you know? The struggle is real.
posted by Mizu at 2:49 PM on July 7 [6 favorites]
Response by poster: Both my cats died recently and I am not in a rush to replace them because my hyperosmia has been getting worse over time to the point where I was basically trapped in the bedroom these past few years because I couldn't tolerate being in the same room as the litter boxes even though my husband scooped them immediately after every use.
I would like to have cats again someday but I may need to have my sense of smell surgically blunted first or the cats would just create more problems than they solved.
posted by Jacqueline at 2:55 PM on July 7
I would like to have cats again someday but I may need to have my sense of smell surgically blunted first or the cats would just create more problems than they solved.
posted by Jacqueline at 2:55 PM on July 7
I have similar struggles, though for me the memory hole stuff is more clearly related to hyperfocusing on something and absentmindedly dismissing people or things that try to get my attention in that time, or time blindness, or stuff like the classic walking into a room with no idea why.
Anyway, some things that sometimes help me without habits are: 1. making the thing more inherently fun in some way so I want to do it more (like buying nice supplies or doing something fun like listening to music while doing it), 2. putting some object in the way that I'll need to move and hopefully trigger a memory, 3. asking someone to text me a reminder, 4. keeping text reminders in my notifications bar instead of dismissing them (only works if reminders are used sparingly, or all are ignored), and 5. leaning into impulsive thoughts as hard as possible (oh I see a spill right there/randomly remembered a bill that's due soon/realized haven't seen my friend in ages, I will now immediately drop everything and take a cloth and clean just that one spot /pay that one bill /text my friend something right now so I don't forget). Also maybe more helpful than any of those, just asking Alexa to remind me in some amount of time, minutes/hours/weeks/months away, or sometimes once every month etc, and while using the setting that also messages my phone with the reminder, and trying not to remove that notification until I deal with it or set a new reminder.
None of these are a cure or foolproof, but all are sometimes helpful.
posted by randomnity at 2:56 PM on July 7 [2 favorites]
Anyway, some things that sometimes help me without habits are: 1. making the thing more inherently fun in some way so I want to do it more (like buying nice supplies or doing something fun like listening to music while doing it), 2. putting some object in the way that I'll need to move and hopefully trigger a memory, 3. asking someone to text me a reminder, 4. keeping text reminders in my notifications bar instead of dismissing them (only works if reminders are used sparingly, or all are ignored), and 5. leaning into impulsive thoughts as hard as possible (oh I see a spill right there/randomly remembered a bill that's due soon/realized haven't seen my friend in ages, I will now immediately drop everything and take a cloth and clean just that one spot /pay that one bill /text my friend something right now so I don't forget). Also maybe more helpful than any of those, just asking Alexa to remind me in some amount of time, minutes/hours/weeks/months away, or sometimes once every month etc, and while using the setting that also messages my phone with the reminder, and trying not to remove that notification until I deal with it or set a new reminder.
None of these are a cure or foolproof, but all are sometimes helpful.
posted by randomnity at 2:56 PM on July 7 [2 favorites]
Response by poster: (Not trying to thread-sit, just was incapable of remembering everything I should have included in my original post because of the memory issues described in my original post!)
posted by Jacqueline at 2:57 PM on July 7
posted by Jacqueline at 2:57 PM on July 7
Best answer: You might find advice given to people with disassociative disorders helpful. I'm not saying that you have one at all but that some of the advice there may be useful to you because it focuses more on the memory/awareness component of what you are experiencing than ADHD advice does. Mostly it's using a variety of grounding techniques to help you focus on your present moment and what is actually going on as opposed to the thing your brain wants you to focus on or the thing your brain wants you not to focus on.
Some of this may be things like physically noticing yourself in a space, deep breathing, strong scents or smells. Basically things to bring your attention to where you are and what you are currently doing.
Overall though I'll echo what other people have said above that this isn't classic ADHD presentation and it is worth further investigation by medical and behavioral health providers.
posted by AlexiaSky at 3:32 PM on July 7 [5 favorites]
Some of this may be things like physically noticing yourself in a space, deep breathing, strong scents or smells. Basically things to bring your attention to where you are and what you are currently doing.
Overall though I'll echo what other people have said above that this isn't classic ADHD presentation and it is worth further investigation by medical and behavioral health providers.
posted by AlexiaSky at 3:32 PM on July 7 [5 favorites]
I was going to say that psychiatric service dogs are a thing and while they probably can't help you stay mentally focused on studying, they certainly can persistently remind you to do specific observable tasks. But obviously one can't be "a bitch" to them. I wonder if there'd be any pattern to the blocks of missing memories, such as it having been a long time since you ate, or missed sleep the night before. Would someone be willing to help track some variables like that, and review some days with you looking for memory gaps? I don't so much mean the "turning alarms off without noticing" part, but the more nuanced stuff. That really does seem worthy of additional attention, and if there are any observable patterns I'm sure it'd be of interest to those medical and/or behavioral health providers, whom I agree should be aware of the extent of the difficulties you're having. I am sorry if they're among the ones who've been skeptical of your claims and if so maybe you could ask another question describing that experience more so folks could help strategize getting you better care.
posted by teremala at 4:19 PM on July 7 [1 favorite]
posted by teremala at 4:19 PM on July 7 [1 favorite]
Best answer: This does sound like super severe symptoms that I’ve never heard of before. Any chance it’s not all ADHD? Narcolepsy maybe? Mild epilepsy with absence seizures?
posted by nouvelle-personne at 4:40 PM on July 7 [4 favorites]
posted by nouvelle-personne at 4:40 PM on July 7 [4 favorites]
Have you worked with a professional about this at all? Someone like an occupational therapist?
posted by anastasiav at 5:07 PM on July 7
posted by anastasiav at 5:07 PM on July 7
My way of tricking my ADHD brain into being disciplined is to shape my environment so that when I get distracted by what is around me it leads me to doing the things I want to be doing. It is more subtle than leaving myself notes and reminders, because those wouldn't work, translating the words into doing something is a step that does not come easily for me. I keep my desk in an active state, so that when I sit down at it what I want to do is already there and it is easier to slip back into it. And I don't put things away in the kitchen, there are always pots on the stove waiting for me and my favourite snacks are always visible. I don't learn habits doing this but I do learn associations, and I can let myself drift and putter about in my home and trust that I will be getting things done as I do.
posted by spindle at 6:51 PM on July 7 [3 favorites]
posted by spindle at 6:51 PM on July 7 [3 favorites]
Response by poster: I can believe that that image might be a dim memory, instead of a vivid imagination.
It's so weird that you mentioned vivid imagination and mistaking it for memories because that's the reason that I deliberately avoid daydreaming about anything close to my real life.
My daydreams are so immersive that they seem to hijack the memory formation process to the point where I remember my daydreams as experiences that actually happened to me. So a very long time ago, back when I was still a child, I made a rule for myself to never daydream about my real life, so that when I "remember" something that didn't happen, I can tell that it's a false memory because fictional characters are there or we're not on Earth or whatever.
So yeah my memory issues include remembering things that didn't happen in addition to not remembering things that did happen. I just didn't think to mention that part in my post because I have an effective system for telling the false memories from the real ones.
I also tend to hallucinate when I'm sleep deprived, which happens a lot, so I'm basically always monitoring whether what I'm experiencing is plausible and I dismiss a lot of stuff as "I know this isn't real because it can't be."
Like once I was in the hospital and my cat was there walking around on top of the bed and rubbing his head on me etc. I knew he wasn't real because the ER nurses weren't reacting to him and also he had no means of getting to the hospital since he can't even drive. So I pressed the call button and let them know to add hallucinations to my list of symptoms.
I still "remember" my cat being with me in the hospital last year more vividly than I remember real things that actually happened last week.
posted by Jacqueline at 7:59 PM on July 7
It's so weird that you mentioned vivid imagination and mistaking it for memories because that's the reason that I deliberately avoid daydreaming about anything close to my real life.
My daydreams are so immersive that they seem to hijack the memory formation process to the point where I remember my daydreams as experiences that actually happened to me. So a very long time ago, back when I was still a child, I made a rule for myself to never daydream about my real life, so that when I "remember" something that didn't happen, I can tell that it's a false memory because fictional characters are there or we're not on Earth or whatever.
So yeah my memory issues include remembering things that didn't happen in addition to not remembering things that did happen. I just didn't think to mention that part in my post because I have an effective system for telling the false memories from the real ones.
I also tend to hallucinate when I'm sleep deprived, which happens a lot, so I'm basically always monitoring whether what I'm experiencing is plausible and I dismiss a lot of stuff as "I know this isn't real because it can't be."
Like once I was in the hospital and my cat was there walking around on top of the bed and rubbing his head on me etc. I knew he wasn't real because the ER nurses weren't reacting to him and also he had no means of getting to the hospital since he can't even drive. So I pressed the call button and let them know to add hallucinations to my list of symptoms.
I still "remember" my cat being with me in the hospital last year more vividly than I remember real things that actually happened last week.
posted by Jacqueline at 7:59 PM on July 7
This may not work b/c of the smell problem, and there are lots of logistical barriers, but there are service dogs for ADHD. One of the typical tasks they are trained to do is if medication alarm goes off, they keep "alerting you" so for example, tapping you with their paw, until you take the medication. They can even be trained to get a medication case and a water bottle and bring them to you. You could almost certainly train them to learn different alarms, so you could have an "eat dinner" alarm, or whatever.
Service dogs can also be tremendously helpful for PTSD.
I have both PTSD and ADHD. My ADHD is controlled well enough by meds. I have a service dog trained to help with the PTSD.
It often takes either a couple years or tens of thousands of dollars to get a service dog through an organization. I owner-trained my SD, which is legal under the ADA in the US, but I would not recommend that to most people. It's a lot of work, you have to really enjoy dog training and be educated and committed to the training, and I also got incredibly lucky that the puppy prospect I picked out was so temperamentally well suited to this. Also, you'd have to actually want a dog, and be okay with the dog bugging you to take meds or whatever without getting frustrated at the dog for doing its job.
But when you were describing the issue, it's instantly what my brain thought of.
posted by litera scripta manet at 8:01 PM on July 7 [4 favorites]
Service dogs can also be tremendously helpful for PTSD.
I have both PTSD and ADHD. My ADHD is controlled well enough by meds. I have a service dog trained to help with the PTSD.
It often takes either a couple years or tens of thousands of dollars to get a service dog through an organization. I owner-trained my SD, which is legal under the ADA in the US, but I would not recommend that to most people. It's a lot of work, you have to really enjoy dog training and be educated and committed to the training, and I also got incredibly lucky that the puppy prospect I picked out was so temperamentally well suited to this. Also, you'd have to actually want a dog, and be okay with the dog bugging you to take meds or whatever without getting frustrated at the dog for doing its job.
But when you were describing the issue, it's instantly what my brain thought of.
posted by litera scripta manet at 8:01 PM on July 7 [4 favorites]
I don’t have an answer to your question, but your descriptions of imagination/daydreams remind me of the term “hyperphantasia” which may lead you somewhere interesting, maybe?
posted by samthemander at 9:07 PM on July 7
posted by samthemander at 9:07 PM on July 7
Best answer: Complex trauma and dissociative disorders can have these features. I have found that my friends who are autistic and ADHD tend to have these experiences at a higher rate than the general population, especially if accompanied by childhood abuse (including neglect). Vivid daydreams, poor autobiographical memory, chunks of time missing, unusual compartmentalization of feelings, alexithymia... you might look up the terms "structural dissociation" and "continuum of dissociation" and see if that rings a bell. It's an area of mental health that's pretty common but not much talked about. Here are a few links: [1] [2] [3] [4]
One thing you can do is start a journal (some people use Discord servers!) to track your days. It can make continuity easier.
You might also look into parts work/ ego state therapies like Internal Family Systems. Schwartz's "No Bad Parts" is a good intro book.
posted by lloquat at 9:17 PM on July 7 [5 favorites]
One thing you can do is start a journal (some people use Discord servers!) to track your days. It can make continuity easier.
You might also look into parts work/ ego state therapies like Internal Family Systems. Schwartz's "No Bad Parts" is a good intro book.
posted by lloquat at 9:17 PM on July 7 [5 favorites]
If your ADHD meds cause hyperfixation without allowing you to choose what activity you're doing, they may be the wrong meds for you. Different meds can have different effects.
posted by gideonfrog at 9:21 PM on July 7
posted by gideonfrog at 9:21 PM on July 7
1) Depression (which obviously can come with PTSD) is linked with poor autobiographical memory, ie “overgeneral memory” - rather than have discrete, specific memories, people who’ve gone through long periods of depression have memories that are gist-like and impressionistic. (One reason could be that for memories to be encoded well, attention - energized by alertness - needs to be paid to external happenings in the moment, and when you’re depressed, you’re ruminating on internal experience.)
But yeah alertness could be a factor too.
2) Sleep is when memories are consolidated. Sleep is also required to have the requisite attention and alertness to encode new memories. Being chronically sleep-deprived can seriously mess with memory and cognitive function in general. If you haven’t had a sleep study done please do!
posted by cotton dress sock at 10:06 PM on July 7
But yeah alertness could be a factor too.
2) Sleep is when memories are consolidated. Sleep is also required to have the requisite attention and alertness to encode new memories. Being chronically sleep-deprived can seriously mess with memory and cognitive function in general. If you haven’t had a sleep study done please do!
posted by cotton dress sock at 10:06 PM on July 7
Mod note: A couple deleted. Sorry, but we need to stick to offering possible solutions or related help with the issue here; contact OP directly to possibly have a more chatty conversation, or perhaps there's a related post that could be made in the blue, and people could discuss more generally there.
posted by taz (staff) at 10:41 PM on July 7
posted by taz (staff) at 10:41 PM on July 7
Best answer: About memory: I forget a lot of the things you've described, and some of them actually sound pretty normal (like finding things by trying to figure out where you would possibly have put them - that's the standard advice, right? If people remembered where they put things they wouldn't be misplaced.) That said, I absolutely don't remember things I've read or learned, and I do remember a lot of autobiographical stuff, though with a lot of massive gaps. Like you, I do sometimes remember daydreams or regular dreams as things that actually happened.
Part of the issue is ADHD, but I think I also retain information less when I'm stressed, dealing with more anxiety than usual, or juggling more things than usual. And lack of sleep is a huge contributor too. But also my memory just really sucks and always has (maybe because I've been sleep deprived for so long?), so I've gotten in the habit* of keeping journal-style timestamped searchable notes about very mundane things, so that later I can look back and check if I've done something, when I've done something, what I was doing during a certain timespan, and so forth. Sometimes I also use email/texting/chat history that way. Looking back at your metafilter history seems like a pretty reasonable memory aid, to me.
*When I say habit I mean it relatively speaking - it's not like I do it 100% regularly, but I set it up to be super easy to do (stuff like a one-key shortcut on my computer) and over the years it's become a bit of an emotional habit, like I feel a need to tell this timestamped text file what's going on with my life, including boring accomplishments nobody else would be interested in like "I changed a water filter" or "I cooked beans!", which as a bonus I can later check to see if it's time to change the filter again or how long the beans have been sitting in the fridge for. I forget to record a lot of stuff, but it's much better than nothing.
Regarding everything else: are there any exceptions to what you're describing? Things you do remember to do, or do manage to accomplish without getting distracted at least x% of the time? This can include even quick things, like feeding your cat or charging your phone. If so, what makes those things possible?
posted by trig at 2:12 AM on July 8
Part of the issue is ADHD, but I think I also retain information less when I'm stressed, dealing with more anxiety than usual, or juggling more things than usual. And lack of sleep is a huge contributor too. But also my memory just really sucks and always has (maybe because I've been sleep deprived for so long?), so I've gotten in the habit* of keeping journal-style timestamped searchable notes about very mundane things, so that later I can look back and check if I've done something, when I've done something, what I was doing during a certain timespan, and so forth. Sometimes I also use email/texting/chat history that way. Looking back at your metafilter history seems like a pretty reasonable memory aid, to me.
*When I say habit I mean it relatively speaking - it's not like I do it 100% regularly, but I set it up to be super easy to do (stuff like a one-key shortcut on my computer) and over the years it's become a bit of an emotional habit, like I feel a need to tell this timestamped text file what's going on with my life, including boring accomplishments nobody else would be interested in like "I changed a water filter" or "I cooked beans!", which as a bonus I can later check to see if it's time to change the filter again or how long the beans have been sitting in the fridge for. I forget to record a lot of stuff, but it's much better than nothing.
Regarding everything else: are there any exceptions to what you're describing? Things you do remember to do, or do manage to accomplish without getting distracted at least x% of the time? This can include even quick things, like feeding your cat or charging your phone. If so, what makes those things possible?
posted by trig at 2:12 AM on July 8
I highly recommend the app Due. It allows you to set up reminders, and you can dismiss them all you like, but until you actually open up the app and check it as done, it keeps reminding you every 5 minutes (you can change the interval). This has been amazing for me, as previously, I’d set something up, see the reminder, go - oh, I’ll do that in a minute, dismiss it, and then forget. It’s for people with ADHD.
I also think you may not be on the correct ADHD medication, which I know is a pain, particularly when you can’t remember how you are doing on the medicine and whether or not it’s helping your symptoms. I heard about a program on a podcast called iFocus - it uses a web browser and a camera to test your focus while reading and it is supposed to help track how well your medicine is working for you. Here is the web address - http://www.ifocustest.com/
posted by needlegrrl at 2:27 AM on July 8 [6 favorites]
I also think you may not be on the correct ADHD medication, which I know is a pain, particularly when you can’t remember how you are doing on the medicine and whether or not it’s helping your symptoms. I heard about a program on a podcast called iFocus - it uses a web browser and a camera to test your focus while reading and it is supposed to help track how well your medicine is working for you. Here is the web address - http://www.ifocustest.com/
posted by needlegrrl at 2:27 AM on July 8 [6 favorites]
Best answer: So I have no idea how to change behaviors that I'm not choosing and don't remember.
I also think it’s worth looking into dissociative disorder techniques. Here’s one suggestion: The next time you stumble on one of these memory holes, grab a journal and ask in your internal universes about this memory holed time, if possible with a neutral sense of curiosity. Like you’d ask a friend about their day. If you find yourself writing or drawing a fiction about it, go with it (don’t censor it.) Even if you feel it’s completely pointless, try to establish a habit of spending a bit of time (for me while on a bus was good) writing down everything that happened in your day that you remember. No worries if it’s not continuous or seems to make no sense or your writing style changes. Just go with it. If you miss days, it’s okay. You’re just giving yourself time and space to make connections through the part of your brain that processes language and art.
Another suggestion is the next time you want to do something continuously, make an announcement on your internal universe’s PA system (which you can invent) that you would like to continue X task until Y is done for Z reason. Then you can go through some of the grounding exercises AlexiaSky mentioned.
Just see if that helps. It may get worse for a while. If it gets worse, keep it up. Worse is also a result.
The cat visit…is cool, like you handled it fine but you also had a bit of comfort at a tough time. It’s okay to both be aware it’s not real and pet the cat.
posted by warriorqueen at 3:23 AM on July 8 [5 favorites]
I also think it’s worth looking into dissociative disorder techniques. Here’s one suggestion: The next time you stumble on one of these memory holes, grab a journal and ask in your internal universes about this memory holed time, if possible with a neutral sense of curiosity. Like you’d ask a friend about their day. If you find yourself writing or drawing a fiction about it, go with it (don’t censor it.) Even if you feel it’s completely pointless, try to establish a habit of spending a bit of time (for me while on a bus was good) writing down everything that happened in your day that you remember. No worries if it’s not continuous or seems to make no sense or your writing style changes. Just go with it. If you miss days, it’s okay. You’re just giving yourself time and space to make connections through the part of your brain that processes language and art.
Another suggestion is the next time you want to do something continuously, make an announcement on your internal universe’s PA system (which you can invent) that you would like to continue X task until Y is done for Z reason. Then you can go through some of the grounding exercises AlexiaSky mentioned.
Just see if that helps. It may get worse for a while. If it gets worse, keep it up. Worse is also a result.
The cat visit…is cool, like you handled it fine but you also had a bit of comfort at a tough time. It’s okay to both be aware it’s not real and pet the cat.
posted by warriorqueen at 3:23 AM on July 8 [5 favorites]
It sounds like you might have a harder time tying memories or actions to neutral-to-negative inputs. This is pretty simplistic, but if your alarm plays a song you like, or the key hook is attached to a piece of art you enjoy looking at, would that help? My struggles are not at your scale but have a similar shape, and some little things like making my wallet beautiful has boosted the importance my mind gives to it, and now I lose it less often.
posted by tchemgrrl at 4:28 AM on July 8 [2 favorites]
posted by tchemgrrl at 4:28 AM on July 8 [2 favorites]
I have been so much happier now that I refuse to develop habits or use habit building apps. I can’t keep them! I use several reminder apps and am a big fan of Finch because it is game like and there are vitally, no negative feedback for missing anything. I also write everything down. Today I wrote down on a post-it to brush my teeth and eat breakfast and accepted that it took until 2pm for me to remember to do that. I have a stack of postcards with short lists for common things like day trip packing, going to the library etc which have all the tiny steps listed for reference. Like I am an amnesiac. So helpful for the 50% of days when I go uhh what am I supposed to do next? For something routine because I have forgotten despite having done it six million times.
Also! It is okay to have like a dozen timers! I have THREE different alarm systems on my phone and two physical alarm clocks and five timers because has it been two minutes? Two hours? I don’t know! So I use timers all the damn time.
When your memory doesn’t work, it’s okay to use store-bought aka externalise the hell out of it. Look up hacks for short term memory loss.
posted by dorothyisunderwood at 4:31 AM on July 8 [7 favorites]
Also! It is okay to have like a dozen timers! I have THREE different alarm systems on my phone and two physical alarm clocks and five timers because has it been two minutes? Two hours? I don’t know! So I use timers all the damn time.
When your memory doesn’t work, it’s okay to use store-bought aka externalise the hell out of it. Look up hacks for short term memory loss.
posted by dorothyisunderwood at 4:31 AM on July 8 [7 favorites]
Huh, I'm lots better than this now, but honestly it does remind me of me in my 20s, probably less bad, but it's hard to recall still. 😅. I'm not entirely sure which things helped, I think it was a combination, so, listing as many things as possible:
1. Visual memory development:
I think there's at least 2 types of visual memory, the ones I experience are, 'dreams/trance' which is a fully immersive environment like when I'm dreaming at night, or *sometimes* daydreaming. I had to tell myself to stop dreaming in my early 20s for awhile because it felt more real than real life.
'Normal' visual imagination, more like just seeing things on an internal screen as it were? Less intense than dreaming, less random, it's either consciously controlled or recall of memories mostly. Weirdly, I couldn't do this previously - I was largely aphantasic, except when I was asleep and dreaming, or half-asleep enough that I 'daydreamed'. Sooooo, over 20 years I've developed this visual imagining skill, and now I can remember more of my own life, autobiographical memories.
And yeah, I've concluded that these are, while both visual, actually two different skills in the brain because I could do one and not the other.
2. Sleep. I have at best, DSPS and if I don't stay on top of it, non-24 hour sleep disorder (I slide an hour forward each day). 'Small dose' (actually appropriate dose) melatonin - 0.3mg NOT MORE! Along with lights, food, heating in the morning etc, jobs that I don't have to get up earlier than 8am for, etc.
I think being sleep deprived was adding a level of de-realisation etc to my life. Having enough sleep, has helped lots.
3. Turns out I'm celiac. That was causing me to need 9-10 hours sleep a night, easy (16 without an alarm clock), and I was suffering from brain fog.
Prior to realising the celiac, just going on antihistamines so I could breath at night helped a lot, so if there's anything sleep apnea-ish, brain works much better on breathing properly and getting actual deep sleep.
4. I did a month long yoga retreat in Thailand (it was very cheap, but that's because it was the bait for a sex cult. Yeeeeeeah. Agama Yoga in Thailand. But I gathered that before hand from the reviews and declined to get involved with anything any further than their 'introductory' yoga program). That and Thai massage every few days - btw Thai massage is not sexy, you wear pajamas, are out in the open, there's no oil, just getting physiotherapist style bent into a yoga pretzel.
I dunno what I had going on either, but if my 'body was keeping the score', then between those two things, my body dumped about a decade worth of stress.
5. *THEN* I did a bunch of Vipassana or Thai forest tradition meditation. Eg the 10 day silent meditation retreats. This was bruuuuuuutal at first, because, ADHD. It was easier straight after point 4. It was easier for me to be stubborn and stay at a 10 day retreat and have to do it all day long, than to try to consistently build a daily meditation practice. Actually, I still haven't been able to do that, but meditation was literally boredom and focus practice, which we are very very bad at so no wonder it's hard, and on retreat, there was kinda nothing going on externally to get stressed about (which is the point of the silence BTW, you aren't getting yourself caught up in social dramas, so at best you'll have to rehash very old ones, if you can remember them - and you've got nothing else to do, so you probably will! The first one I came out of having recalled almost all the words to the songs of the Buffy musical episode. On subsequent meditation retreats I was actually getting into my own life a bit more, but again, the practice focusing helped.
6. Oh, also LSD intermittently - one of the side things that also helped the visual memory development, and recall of my own autobiographical memories at times, and just generally processing stuff.
7. I think I made life less stressful for myself at times by creating elaborate systems which treated myself like the ball in a rube Goldberg machine. Eg if I need my hyperfocus broken, then as well as alarm messages saying it's time to finish soon, the brightness of screen and lighting getting darker and darker until it is distracting me, and heater making it warmer until I'm too hot (sometimes an early reminder was to chug a glass of water), and I'm having to find a stopping point to go pee, cool down etc.
So yeah, all the above sounds pretty weird, but my brain is definitely closer to neurotypical now than it was?
Oh, bonus:
Travel. As cheaply as you can, but a different bedroom every few days, a new city every week, new country and languages every few weeks. Go outside and have a different streetfood meal for every other meal (alternating with your current favourites!).
My brain was searching for enough *stimulation* to pay attention, and it's like that need was finally met in my environment, and I just had this sense of peace I hadn't had before, ever. It was the first time in my life I started to kind of, almost, form habits. Like, I'd pack and unpack my bags in roughly the same order, because I was no longer subconsciously craving novelty, my craving for novelty was finally being met (eg before that I realised that when walking home on autopilot, my feet would take whichever route I had taken*least* recently).
So yeah, then doing the yoga and massage to chill out nervous system or whatever was going on, then meditation, and it's not a fix, but it helped.
And yeah I also have ADHD meds and it helps a bit, but kind of not as much as for other people because it sometimes just makes it easier to focus on one thing but not any better at changing focus, and instead of being distracted and then changing, I get stuck.
posted by Elysum at 5:34 AM on July 8 [4 favorites]
1. Visual memory development:
I think there's at least 2 types of visual memory, the ones I experience are, 'dreams/trance' which is a fully immersive environment like when I'm dreaming at night, or *sometimes* daydreaming. I had to tell myself to stop dreaming in my early 20s for awhile because it felt more real than real life.
'Normal' visual imagination, more like just seeing things on an internal screen as it were? Less intense than dreaming, less random, it's either consciously controlled or recall of memories mostly. Weirdly, I couldn't do this previously - I was largely aphantasic, except when I was asleep and dreaming, or half-asleep enough that I 'daydreamed'. Sooooo, over 20 years I've developed this visual imagining skill, and now I can remember more of my own life, autobiographical memories.
And yeah, I've concluded that these are, while both visual, actually two different skills in the brain because I could do one and not the other.
2. Sleep. I have at best, DSPS and if I don't stay on top of it, non-24 hour sleep disorder (I slide an hour forward each day). 'Small dose' (actually appropriate dose) melatonin - 0.3mg NOT MORE! Along with lights, food, heating in the morning etc, jobs that I don't have to get up earlier than 8am for, etc.
I think being sleep deprived was adding a level of de-realisation etc to my life. Having enough sleep, has helped lots.
3. Turns out I'm celiac. That was causing me to need 9-10 hours sleep a night, easy (16 without an alarm clock), and I was suffering from brain fog.
Prior to realising the celiac, just going on antihistamines so I could breath at night helped a lot, so if there's anything sleep apnea-ish, brain works much better on breathing properly and getting actual deep sleep.
4. I did a month long yoga retreat in Thailand (it was very cheap, but that's because it was the bait for a sex cult. Yeeeeeeah. Agama Yoga in Thailand. But I gathered that before hand from the reviews and declined to get involved with anything any further than their 'introductory' yoga program). That and Thai massage every few days - btw Thai massage is not sexy, you wear pajamas, are out in the open, there's no oil, just getting physiotherapist style bent into a yoga pretzel.
I dunno what I had going on either, but if my 'body was keeping the score', then between those two things, my body dumped about a decade worth of stress.
5. *THEN* I did a bunch of Vipassana or Thai forest tradition meditation. Eg the 10 day silent meditation retreats. This was bruuuuuuutal at first, because, ADHD. It was easier straight after point 4. It was easier for me to be stubborn and stay at a 10 day retreat and have to do it all day long, than to try to consistently build a daily meditation practice. Actually, I still haven't been able to do that, but meditation was literally boredom and focus practice, which we are very very bad at so no wonder it's hard, and on retreat, there was kinda nothing going on externally to get stressed about (which is the point of the silence BTW, you aren't getting yourself caught up in social dramas, so at best you'll have to rehash very old ones, if you can remember them - and you've got nothing else to do, so you probably will! The first one I came out of having recalled almost all the words to the songs of the Buffy musical episode. On subsequent meditation retreats I was actually getting into my own life a bit more, but again, the practice focusing helped.
6. Oh, also LSD intermittently - one of the side things that also helped the visual memory development, and recall of my own autobiographical memories at times, and just generally processing stuff.
7. I think I made life less stressful for myself at times by creating elaborate systems which treated myself like the ball in a rube Goldberg machine. Eg if I need my hyperfocus broken, then as well as alarm messages saying it's time to finish soon, the brightness of screen and lighting getting darker and darker until it is distracting me, and heater making it warmer until I'm too hot (sometimes an early reminder was to chug a glass of water), and I'm having to find a stopping point to go pee, cool down etc.
So yeah, all the above sounds pretty weird, but my brain is definitely closer to neurotypical now than it was?
Oh, bonus:
Travel. As cheaply as you can, but a different bedroom every few days, a new city every week, new country and languages every few weeks. Go outside and have a different streetfood meal for every other meal (alternating with your current favourites!).
My brain was searching for enough *stimulation* to pay attention, and it's like that need was finally met in my environment, and I just had this sense of peace I hadn't had before, ever. It was the first time in my life I started to kind of, almost, form habits. Like, I'd pack and unpack my bags in roughly the same order, because I was no longer subconsciously craving novelty, my craving for novelty was finally being met (eg before that I realised that when walking home on autopilot, my feet would take whichever route I had taken*least* recently).
So yeah, then doing the yoga and massage to chill out nervous system or whatever was going on, then meditation, and it's not a fix, but it helped.
And yeah I also have ADHD meds and it helps a bit, but kind of not as much as for other people because it sometimes just makes it easier to focus on one thing but not any better at changing focus, and instead of being distracted and then changing, I get stuck.
posted by Elysum at 5:34 AM on July 8 [4 favorites]
It sounds like your cPTSD symptoms are interacting with and making your ADHD worse. Habit or routine development is actually a higher level skill for people with executive dysfunction; in my experience you may need to focus on the basics first, i.e. sleep, food, movement, contact with the natural world. Sleep problems are very common for ADHDers, but getting enough sleep is super important to staying regulated. (This is something I also always forget, then can't figure out why I'm so cranky and disorganized, only to realize I've been staying up past midnight and getting 6 or less hours of sleep, d'oh!)
One thing that's super common with ADHD is that we try to "make up" for our ADHD symptoms by trying to be on top of everything all the time, and since this is literally impossible, we inevitably fail and feel bad and ashamed, which increases the desire for control, rinse, repeat. I've found that I have to let go my need to be in control and accept that I will struggle in order to usefully address my problems. For example, when I am trying really hard to not be late, I'm rushing, I'm feeling stress which makes it hard to focus, I'm forgetting things I need--and then I'm late anyway. But when I gave up on the idea of being on time and just expected that I would be late, I started being timely much more often, because I wasn't making things worse for myself by having unrealistic expectations. The pressure to "act normal" is often a burden that actually makes things worse for ADHD people. ADHD is a disability; we need accommodations, not discipline.
My dog is actually reminding me right now that I have to get off the computer and get ready for work, but I'll leave you with this link to a pdf about journaling as therapeutic treatment. Ideally you'd be addressing your cPTSD with professional support, but that's not always very accessible and sometimes we just need a safe place to start.
posted by radiogreentea at 6:40 AM on July 8 [4 favorites]
One thing that's super common with ADHD is that we try to "make up" for our ADHD symptoms by trying to be on top of everything all the time, and since this is literally impossible, we inevitably fail and feel bad and ashamed, which increases the desire for control, rinse, repeat. I've found that I have to let go my need to be in control and accept that I will struggle in order to usefully address my problems. For example, when I am trying really hard to not be late, I'm rushing, I'm feeling stress which makes it hard to focus, I'm forgetting things I need--and then I'm late anyway. But when I gave up on the idea of being on time and just expected that I would be late, I started being timely much more often, because I wasn't making things worse for myself by having unrealistic expectations. The pressure to "act normal" is often a burden that actually makes things worse for ADHD people. ADHD is a disability; we need accommodations, not discipline.
My dog is actually reminding me right now that I have to get off the computer and get ready for work, but I'll leave you with this link to a pdf about journaling as therapeutic treatment. Ideally you'd be addressing your cPTSD with professional support, but that's not always very accessible and sometimes we just need a safe place to start.
posted by radiogreentea at 6:40 AM on July 8 [4 favorites]
I'm glad to see I'm not going to be the first person to bring up sleep. I also have a wonky memory (and the AskMe question to show for it) and while some of it, like my moderate faceblindness, seems to be more innate, a lot of my issues change dramatically based on whether I've slept well or not. So, OP, how's your sleep?
Here's what works pretty well for me, at least during times when my mental health is otherwise decent.
* First, track your sleep: This can be done without much in the way of habit formation: I use my Apple Watch, my partner uses a FitBit, and there are a lot of other sleep tracker apps that only require you to put your phone in your bed while you sleep. Tracking will tell you if you are getting enough sleep, and if you're getting enough quality/deep sleep. So that could potentially rule out sleep as an issue, or alternatively, it could indicate that sleep issues are so severe they need medical help, not the AskMe advice of a lay person like me (e.g., if you're getting lots of sleep but none of it is deep sleep).
* Get a decent white noise machine: I have a LectroFan machine based on a Wirecutter recommendation, and I like it. I had a cheaper one previously but I could hear when the loop of white noise repeated and I found that disruptive.
* Sleep in a cold room: I keep my air conditioning down to 69º (nice) at night. But before I had central A/C I used a window fan pointed at my face and it worked decently well.
* Wear a sleep mask: The cheapest ones work fine for me. I found that the more expensive ones pressed down on my eyes while I slept and caused me to have blurry vision.
*Melatonin: I take 10mg a night. Check with your doctor whether this is OK with any medication(s) you are on. I acknowledge this might be more habit-y than what you are able to do.
* Have some kind of pre-bed ritual: I guess this is the most habit forming part, so it also might be not an option for you, but I have a few simple things I do before bed that remind my mind and body that it's bedtime. These are not fancy, just things like "I usually veg on the couch and watch calming YouTube videos and yes I know that every doctor will tell me I'm supposed to take a screen break but I just ...don't and it works fine" and "I brush my teeth".
Getting back to "times when my mental health is otherwise decent": I'm also glad I'm not going to be the first person to bring up that these memory issues don't sound like typical descriptions of ADHD that I've heard, though again - not a professional. I think that exploring trauma therapy (a lot of people I know seem to like EMDR? it doesn't have a super-sound medical research basis but then again neither does my bff melatonin) and/or seeing a neurologist could also be good next steps here.
posted by capricorn at 11:17 AM on July 8 [3 favorites]
Here's what works pretty well for me, at least during times when my mental health is otherwise decent.
* First, track your sleep: This can be done without much in the way of habit formation: I use my Apple Watch, my partner uses a FitBit, and there are a lot of other sleep tracker apps that only require you to put your phone in your bed while you sleep. Tracking will tell you if you are getting enough sleep, and if you're getting enough quality/deep sleep. So that could potentially rule out sleep as an issue, or alternatively, it could indicate that sleep issues are so severe they need medical help, not the AskMe advice of a lay person like me (e.g., if you're getting lots of sleep but none of it is deep sleep).
* Get a decent white noise machine: I have a LectroFan machine based on a Wirecutter recommendation, and I like it. I had a cheaper one previously but I could hear when the loop of white noise repeated and I found that disruptive.
* Sleep in a cold room: I keep my air conditioning down to 69º (nice) at night. But before I had central A/C I used a window fan pointed at my face and it worked decently well.
* Wear a sleep mask: The cheapest ones work fine for me. I found that the more expensive ones pressed down on my eyes while I slept and caused me to have blurry vision.
*Melatonin: I take 10mg a night. Check with your doctor whether this is OK with any medication(s) you are on. I acknowledge this might be more habit-y than what you are able to do.
* Have some kind of pre-bed ritual: I guess this is the most habit forming part, so it also might be not an option for you, but I have a few simple things I do before bed that remind my mind and body that it's bedtime. These are not fancy, just things like "I usually veg on the couch and watch calming YouTube videos and yes I know that every doctor will tell me I'm supposed to take a screen break but I just ...don't and it works fine" and "I brush my teeth".
Getting back to "times when my mental health is otherwise decent": I'm also glad I'm not going to be the first person to bring up that these memory issues don't sound like typical descriptions of ADHD that I've heard, though again - not a professional. I think that exploring trauma therapy (a lot of people I know seem to like EMDR? it doesn't have a super-sound medical research basis but then again neither does my bff melatonin) and/or seeing a neurologist could also be good next steps here.
posted by capricorn at 11:17 AM on July 8 [3 favorites]
Best answer: Given your PTSD diagnosis, I would recommend seeking treatment for that. It absolutely affects memory and some scientists think it is actually a disorder related to storing memories in ways that are maladaptive if the danger of the trauma has passed.
EMDR, however, does depend on recalling specific trauma(s) so it is probably not the modality for you.
posted by mai at 11:40 AM on July 8
EMDR, however, does depend on recalling specific trauma(s) so it is probably not the modality for you.
posted by mai at 11:40 AM on July 8
If your ADHD meds cause hyperfixation without allowing you to choose what activity you're doing, they may be the wrong meds for you. Different meds can have different effects.
This was definitely the case with me. Concerta causes hyperfixation I have no control over, which I really did not like. I am taking vyvanse now and it lets me choose between focusing on something or turning away.
posted by spindle at 6:13 PM on July 8 [1 favorite]
This was definitely the case with me. Concerta causes hyperfixation I have no control over, which I really did not like. I am taking vyvanse now and it lets me choose between focusing on something or turning away.
posted by spindle at 6:13 PM on July 8 [1 favorite]
If you haven't had a sleep study, it might help.
posted by Iris Gambol at 6:33 PM on July 8
posted by Iris Gambol at 6:33 PM on July 8
Response by poster: My sleep quality sucks and I'm already being treated by a sleep specialist for non-24. My sleep disorder is not curable and the available treatments for it don't help much.
So while chronic sleep deprivation is a contributing factor, I've already done everything physically and financially feasible to address it, including all the sleep-related suggestions made in this thread.
I would prefer to focus on non-sleep-related strategies, thanks.
posted by Jacqueline at 11:15 PM on July 8
So while chronic sleep deprivation is a contributing factor, I've already done everything physically and financially feasible to address it, including all the sleep-related suggestions made in this thread.
I would prefer to focus on non-sleep-related strategies, thanks.
posted by Jacqueline at 11:15 PM on July 8
This does sound like super severe symptoms that I’ve never heard of before. Any chance it’s not all ADHD? Narcolepsy maybe? Mild epilepsy with absence seizures?
Agreed -- several things here, particularly the issues around autobiographical memory, remind me a lot of a friend with epilepsy. (Fwiw, she manages hers in part with a ketogenic diet; so far, studies regarding the efficacy of keto diets on ADHD are inconclusive.)
OP, have you had a neurological consult?
posted by paper scissors sock at 6:34 PM on July 9
Agreed -- several things here, particularly the issues around autobiographical memory, remind me a lot of a friend with epilepsy. (Fwiw, she manages hers in part with a ketogenic diet; so far, studies regarding the efficacy of keto diets on ADHD are inconclusive.)
OP, have you had a neurological consult?
posted by paper scissors sock at 6:34 PM on July 9
Oh whoops, forgot to add, but yep -
Keto diet definitely helps too. It's a bit of a pain because I don't want to lose weight, and managing a high calorie keto diet is a struggle, that involves using food trackers to make sure I'm eating enough, as I have to consistently eat past satiety. But dang, it helps. It's just 5-10% easier to do things I mean to do, and I basically never have the complete disconnect of wanting to do something and being unable to move my body at all.
Ahhhh, you have non-24 too!
Ok, I will talk about sleep a bit, but not generic sleep advice, instead, getting into the technical weeds a bit, on coping and things that were useful for me to know with non-24.
First, I did negotiate non standard work hours eg at last role before I managed to stabilise my sleep, I had a longer day but a 2 hour lunch break, and a half day on Wednesday starting at lunchtime. I found a secret nap space too. This was so that on the weeks where my sleep had shifted enough that my body thought I was on night shift, I still got a 1.5 hour nap during my *actual* circadian sleep window, and a sleep in on Wednesday, so that I was only going half a week before getting that catch up sleep. I still slept overnight, approximately at my circadian siesta, tho I would wake up each 1.5 hours (ie after a 'nap'), and get no deep sleep, but it was better than nothing.
Oh, and the nap spaces were *weird*, I found unleased empty floors on adjacent office buildings and snuck in to sleep, with my inflatable pillow, eye mask, blanket, and sleep headphones. 😅
But yeah, sleep when you can, wherever you can.
Also it's easier to shift your circadian rhythm when well rested, go figure.
With non-24 - for years I thought melatonin worked inconsistently, sometimes it just didn't help or made me worse. No one told me, taking melatonin (or having it still in your system) at any point AFTER your own biological circadian sleep midpoint, will shift your circadian rhythm in the *wrong direction*. Eg taking in in your own bodies morning, just makes your rhythm even longer.
So melatonin has to be really carefully timed with non-24 or it shifts us worse.
Same with light therapy.
Light therapy - so I've moved between NZ and England, and my circadian rhythm shifted in relation to each place, so it's not that light therapy is *completely* ineffective, it's just a lot more subtle and complicated than its given credit for, the amount of light needed is usually waaay more, and timed very carefully.
I ended up getting a massive UV fluorescent light intended for pet lizards, and attached it alongside my bed, so I could lie in the light when I first woke up.
Yes, ones with actual UV. Turns out they did some limited studies on light therapy with UV lights and the participants, without knowing which one they got, preferred the treatment with UV, but the risk of skin cancer meant that's not ever used, but well, we evolved under sunlight, so I'm taking a calculated risk.
The most useful protocol I found for melatonin, was the 0.1mg or less of melatonin taken 8 hours before my sleep midpoint (half point between natural sleep and wake). Whatever amount under 0.3mg, if gives you a wave of sleepiness, take even less, this amount is acting as a chronobiotic, essentially sunset in other people, and then 0.25mg taken 40 minutes before sleep.
Apparently for neurotypicals this results in a shift backwards of around 2 hours.
Meanwhile, I, when combining this with massive light therapy as above, found that I could get a max shift of 30 minutes backwards. Which was great! Because I usually go forward an hour! But if I slacked off for a weekend, 2 nights, then it would take a whole week to pull it back. Still, that was enough to stabilise and hold down a 9-5 job.
Stacking the less well known zeitgebers along with the other treatments.
- Heat: an electric mattress pad on a timer, that switches on to heat me before I wake up, mimicking the body temperature rise neurotypicals have before they wake up
- Food: this is hard, because circadian rhythm also controls digestion, so you're not hungry when you wake 'early', but it's also a zeitgeber, a circadian clock setter, so having some water and taking a couple of bites of food when waking, does have a slight circadian impact, and every bit helps.
- keto & b12
- action, exercise etc : when I had to walk soon after waking, well that helped, but I don't feel like it usually except when I lived somewhere with a really pretty walk to work, so it helps, but again that double bind of ADHD and forming routines. I have most of my circadian rhythm stuff on Alexa routines and timers. Tiny fairy lights going to my bathroom at night so there's no overhead lights on, voice reminders for meds, and Smart plug for the Arcadia T5 reptile lighting.
All that aside, I largely fit this profile too, down to the ADHD diagnosis and non-24, and inability to form routine, poor autobiographical memory. I'm interested as to what it might be if not a subtype of ADHD, but it sounds like the severe lack of deep sleep etc from trying to hold down a job while having non-24 etc might be enough to explain most of it. Would still be interested in approaches to improve the bits of brain that have never really had to do these tasks like rememberimg my life and might just be bad at them now.
posted by Elysum at 6:54 AM on July 10 [1 favorite]
Keto diet definitely helps too. It's a bit of a pain because I don't want to lose weight, and managing a high calorie keto diet is a struggle, that involves using food trackers to make sure I'm eating enough, as I have to consistently eat past satiety. But dang, it helps. It's just 5-10% easier to do things I mean to do, and I basically never have the complete disconnect of wanting to do something and being unable to move my body at all.
Ahhhh, you have non-24 too!
Ok, I will talk about sleep a bit, but not generic sleep advice, instead, getting into the technical weeds a bit, on coping and things that were useful for me to know with non-24.
First, I did negotiate non standard work hours eg at last role before I managed to stabilise my sleep, I had a longer day but a 2 hour lunch break, and a half day on Wednesday starting at lunchtime. I found a secret nap space too. This was so that on the weeks where my sleep had shifted enough that my body thought I was on night shift, I still got a 1.5 hour nap during my *actual* circadian sleep window, and a sleep in on Wednesday, so that I was only going half a week before getting that catch up sleep. I still slept overnight, approximately at my circadian siesta, tho I would wake up each 1.5 hours (ie after a 'nap'), and get no deep sleep, but it was better than nothing.
Oh, and the nap spaces were *weird*, I found unleased empty floors on adjacent office buildings and snuck in to sleep, with my inflatable pillow, eye mask, blanket, and sleep headphones. 😅
But yeah, sleep when you can, wherever you can.
Also it's easier to shift your circadian rhythm when well rested, go figure.
With non-24 - for years I thought melatonin worked inconsistently, sometimes it just didn't help or made me worse. No one told me, taking melatonin (or having it still in your system) at any point AFTER your own biological circadian sleep midpoint, will shift your circadian rhythm in the *wrong direction*. Eg taking in in your own bodies morning, just makes your rhythm even longer.
So melatonin has to be really carefully timed with non-24 or it shifts us worse.
Same with light therapy.
Light therapy - so I've moved between NZ and England, and my circadian rhythm shifted in relation to each place, so it's not that light therapy is *completely* ineffective, it's just a lot more subtle and complicated than its given credit for, the amount of light needed is usually waaay more, and timed very carefully.
I ended up getting a massive UV fluorescent light intended for pet lizards, and attached it alongside my bed, so I could lie in the light when I first woke up.
Yes, ones with actual UV. Turns out they did some limited studies on light therapy with UV lights and the participants, without knowing which one they got, preferred the treatment with UV, but the risk of skin cancer meant that's not ever used, but well, we evolved under sunlight, so I'm taking a calculated risk.
The most useful protocol I found for melatonin, was the 0.1mg or less of melatonin taken 8 hours before my sleep midpoint (half point between natural sleep and wake). Whatever amount under 0.3mg, if gives you a wave of sleepiness, take even less, this amount is acting as a chronobiotic, essentially sunset in other people, and then 0.25mg taken 40 minutes before sleep.
Apparently for neurotypicals this results in a shift backwards of around 2 hours.
Meanwhile, I, when combining this with massive light therapy as above, found that I could get a max shift of 30 minutes backwards. Which was great! Because I usually go forward an hour! But if I slacked off for a weekend, 2 nights, then it would take a whole week to pull it back. Still, that was enough to stabilise and hold down a 9-5 job.
Stacking the less well known zeitgebers along with the other treatments.
- Heat: an electric mattress pad on a timer, that switches on to heat me before I wake up, mimicking the body temperature rise neurotypicals have before they wake up
- Food: this is hard, because circadian rhythm also controls digestion, so you're not hungry when you wake 'early', but it's also a zeitgeber, a circadian clock setter, so having some water and taking a couple of bites of food when waking, does have a slight circadian impact, and every bit helps.
- keto & b12
- action, exercise etc : when I had to walk soon after waking, well that helped, but I don't feel like it usually except when I lived somewhere with a really pretty walk to work, so it helps, but again that double bind of ADHD and forming routines. I have most of my circadian rhythm stuff on Alexa routines and timers. Tiny fairy lights going to my bathroom at night so there's no overhead lights on, voice reminders for meds, and Smart plug for the Arcadia T5 reptile lighting.
All that aside, I largely fit this profile too, down to the ADHD diagnosis and non-24, and inability to form routine, poor autobiographical memory. I'm interested as to what it might be if not a subtype of ADHD, but it sounds like the severe lack of deep sleep etc from trying to hold down a job while having non-24 etc might be enough to explain most of it. Would still be interested in approaches to improve the bits of brain that have never really had to do these tasks like rememberimg my life and might just be bad at them now.
posted by Elysum at 6:54 AM on July 10 [1 favorite]
Some suggestions that work for me, you may or may not have tried already:
- Long lastig ADHD meds. Since I've started keeping them next to my bed, I almost never forget them anymore, and also I don't sleep away mornings as often.
- I use a habits app where I added all the steps in my morning routine in extreme detail, so I could use it when I wanted to know what do do next (i.e.: comb hair, instead of just starting on whatever caught my interest in the living room, or worse, computer). I forget to use it 5 out of 7 days each week, but when I remember it, it's there, so on balance it's quite helpful.
- As everyone else says, walking!
- I also liked this video on how neurotypical productivity advice doesn't work for ADHD: Toxic Productivity. TLDW: Don't use neurotypical systems (like rewards, make a list of all the steps), don't be hard on yourself if you fail, change systems that worked before when they stop working.
posted by kwartel at 12:10 PM on July 13 [1 favorite]
- Long lastig ADHD meds. Since I've started keeping them next to my bed, I almost never forget them anymore, and also I don't sleep away mornings as often.
- I use a habits app where I added all the steps in my morning routine in extreme detail, so I could use it when I wanted to know what do do next (i.e.: comb hair, instead of just starting on whatever caught my interest in the living room, or worse, computer). I forget to use it 5 out of 7 days each week, but when I remember it, it's there, so on balance it's quite helpful.
- As everyone else says, walking!
- I also liked this video on how neurotypical productivity advice doesn't work for ADHD: Toxic Productivity. TLDW: Don't use neurotypical systems (like rewards, make a list of all the steps), don't be hard on yourself if you fail, change systems that worked before when they stop working.
posted by kwartel at 12:10 PM on July 13 [1 favorite]
Response by poster: "This does sound like super severe symptoms that I’ve never heard of before. Any chance it’s not all ADHD? Narcolepsy maybe? Mild epilepsy with absence seizures?"
Currently in the ER waiting room because earlier today I "came to" behind the wheel of the moving car despite having had intention of driving anywhere. I'd meant to go to the hardware store and I always walk there because it's only a couple blocks and parking is a nightmare. Instead I apparently got in the car and started mindlessly driving to who knows where.
Thank you for mentioning absence seizures as a possibility because that is why I recognized what might be happening and was able to articulate what happened to the triage nurses.
I've had missing time before, but I was in the same location at the beginning and end of all my precious missing time incidents so I thought it was just ADHD time blindness. This is the first time I've "teleported" while "time traveling."
Already gave the car keys to my husband and told him to hide them.
posted by Jacqueline at 6:19 PM on July 25 [8 favorites]
Currently in the ER waiting room because earlier today I "came to" behind the wheel of the moving car despite having had intention of driving anywhere. I'd meant to go to the hardware store and I always walk there because it's only a couple blocks and parking is a nightmare. Instead I apparently got in the car and started mindlessly driving to who knows where.
Thank you for mentioning absence seizures as a possibility because that is why I recognized what might be happening and was able to articulate what happened to the triage nurses.
I've had missing time before, but I was in the same location at the beginning and end of all my precious missing time incidents so I thought it was just ADHD time blindness. This is the first time I've "teleported" while "time traveling."
Already gave the car keys to my husband and told him to hide them.
posted by Jacqueline at 6:19 PM on July 25 [8 favorites]
Response by poster: ER did blood tests, chest Xray, EKG, MRI, and CT scan and ruled out anything emergent. They're referring me to their hospital's Epilepsy Clinic for follow up, so it seems the ER docs concur with Dr. MetaFilter that I've been having absence seizures.
posted by Jacqueline at 10:18 PM on July 25 [4 favorites]
posted by Jacqueline at 10:18 PM on July 25 [4 favorites]
Response by poster: GUYS I CAN SEE SOUNDS NOW!!!!
(discovered during today's fire alarm and confirmed by deliberately listening to music known to trigger synesthesia in other people)
So if my layperson's understanding of brains is correct, that means it's almost certainly epilepsy or some other organic cause, which is great news because that can be medicated whereas the other likeliest explanation of a dissociative disorder would take a lot more work to fix.
I've looked up causes of adult-onset epilepsy and the ER already ruled out all the scary ones and what's left is autoimmune conditions, which I already know I have (psoriatic arthritis) and am already working on getting better treatment for (the prescription NSAID I've been on for years isn't cutting it anymore and I probably need to be on the same biologic that my mother who has the same condition takes).
so while I can't drive for the next six months, my brain is giving me free psychedelic trips, so that's nice
posted by Jacqueline at 11:22 AM on July 28 [4 favorites]
(discovered during today's fire alarm and confirmed by deliberately listening to music known to trigger synesthesia in other people)
So if my layperson's understanding of brains is correct, that means it's almost certainly epilepsy or some other organic cause, which is great news because that can be medicated whereas the other likeliest explanation of a dissociative disorder would take a lot more work to fix.
I've looked up causes of adult-onset epilepsy and the ER already ruled out all the scary ones and what's left is autoimmune conditions, which I already know I have (psoriatic arthritis) and am already working on getting better treatment for (the prescription NSAID I've been on for years isn't cutting it anymore and I probably need to be on the same biologic that my mother who has the same condition takes).
so while I can't drive for the next six months, my brain is giving me free psychedelic trips, so that's nice
posted by Jacqueline at 11:22 AM on July 28 [4 favorites]
Jacqueline, I'm very glad you're safe after the car episode! Also happy that you're gaining traction on your health issues. My previous answer asked about a sleep study because sleep deprivation can trigger seizures, and poor-quality sleep can worsen existing seizure disorder. Recent research.
posted by Iris Gambol at 11:44 AM on July 28 [1 favorite]
posted by Iris Gambol at 11:44 AM on July 28 [1 favorite]
Response by poster: Yeah my sleep quality has been dogshit since moving into this apartment in October. Sirens and screaming crazy people all night long, which was a surprise because we couldn't hear them at street level when we checked out the neighborhood around midnight to see if it was quiet and even rented a top-floor apartment to avoid hearing footsteps overhead. It turns out the slope of the hills and the placement of the nearby buildings seems to direct all the noise at our floor so that it's significantly louder inside our apartment then it is on the sidewalk directly below it.
We can't afford to move so we're in the process of soundproofing the bedroom, but it's slow going because of the executive dysfunction and fatigue.
posted by Jacqueline at 3:06 PM on August 10 [1 favorite]
We can't afford to move so we're in the process of soundproofing the bedroom, but it's slow going because of the executive dysfunction and fatigue.
posted by Jacqueline at 3:06 PM on August 10 [1 favorite]
Response by poster: For those of you following along at home:
EEG was negative for epilepsy.
Neurologist said all possible organic causes of my July 25 episode had been ruled out and that the problem was most likely psychiatric.
Had my psych new patient intake appointment yesterday, and when the NP mentioned near the end of the appointment that my symptoms sounded like possible PTSD, that jogged my memory that I had actually already been diagnosed with PTSD back in 2017 when I was hospitalized following a suicide attempt
I am cracking up at the irony of my PTSD being so severe that it made me forget that I even had it.
So yeah that's almost certainly the cause of my memory issues and I suspect that means there's a lot of annoying talk therapy in my future. :(
If you are seeing this comment because you're snooping my AskMe history for context for a newly-posted question, PLEASE remind me that I have PTSD if it would be relevant to the new question.
I can already feel my brain trying to forget this information again, like I keep thinking "I should request the records from that hospital" and then immediately get distracted by something else. My brain sure can be an uncooperative little gremlin sometimes.
posted by Jacqueline at 1:49 PM on September 4 [4 favorites]
EEG was negative for epilepsy.
Neurologist said all possible organic causes of my July 25 episode had been ruled out and that the problem was most likely psychiatric.
Had my psych new patient intake appointment yesterday, and when the NP mentioned near the end of the appointment that my symptoms sounded like possible PTSD, that jogged my memory that I had actually already been diagnosed with PTSD back in 2017 when I was hospitalized following a suicide attempt
I am cracking up at the irony of my PTSD being so severe that it made me forget that I even had it.
So yeah that's almost certainly the cause of my memory issues and I suspect that means there's a lot of annoying talk therapy in my future. :(
If you are seeing this comment because you're snooping my AskMe history for context for a newly-posted question, PLEASE remind me that I have PTSD if it would be relevant to the new question.
I can already feel my brain trying to forget this information again, like I keep thinking "I should request the records from that hospital" and then immediately get distracted by something else. My brain sure can be an uncooperative little gremlin sometimes.
posted by Jacqueline at 1:49 PM on September 4 [4 favorites]
I use endless reminders (phone, computer, what have you) to try to get around the distraction. Not just "you need to do this" reminders, but "here's a fact to remember" reminders. Occasionally it even works.
posted by trig at 1:52 PM on September 4 [1 favorite]
posted by trig at 1:52 PM on September 4 [1 favorite]
Best answer: I suspect that means there's a lot of annoying talk therapy in my future. :(
If you're a candidate for EMDR therapy, it has defined phases and doesn’t require talking in detail about a distressing issue. There's no homework.
Short video clips, brief written info, too, about EMDR (via "The National Center for PTSD" .gov site).
Jacqueline — you mentioned your PTSD in this very thread, in a comment made about 40 minutes after your AskMe appeared. Glad you're getting some answers, and thank you for updating us!
posted by Iris Gambol at 3:48 PM on September 4 [3 favorites]
If you're a candidate for EMDR therapy, it has defined phases and doesn’t require talking in detail about a distressing issue. There's no homework.
Short video clips, brief written info, too, about EMDR (via "The National Center for PTSD" .gov site).
Jacqueline — you mentioned your PTSD in this very thread, in a comment made about 40 minutes after your AskMe appeared. Glad you're getting some answers, and thank you for updating us!
posted by Iris Gambol at 3:48 PM on September 4 [3 favorites]
Response by poster: "Jacqueline — you mentioned your PTSD in this very thread, in a comment made about 40 minutes after your AskMe appeared."
oh my god my brain is so ridiculous... i would have sworn that it had been years since i last thought about it
So, yeah, apparently I keep remembering and forgetting and remembering and forgetting my PTSD diagnosis over and over and over again, and also forgetting that I've remembered and forgot it before. Brain, wtf, that is a terrible records retention policy, I know you know better!
Meanwhile, I can consistently remember the ADHD, depression, and anxiety diagnoses just fine, it's just the PTSD that keeps deleting my awareness of it like some sort of computer virus.
This is so surreal that it's moved beyond terrifying and aggravating into just straight-up hilarious territory.
If I weren't so needlephobic, I'm at the point where I'd seriously consider getting myself some "Memento" style tattoos.
posted by Jacqueline at 8:10 PM on September 4 [2 favorites]
oh my god my brain is so ridiculous... i would have sworn that it had been years since i last thought about it
So, yeah, apparently I keep remembering and forgetting and remembering and forgetting my PTSD diagnosis over and over and over again, and also forgetting that I've remembered and forgot it before. Brain, wtf, that is a terrible records retention policy, I know you know better!
Meanwhile, I can consistently remember the ADHD, depression, and anxiety diagnoses just fine, it's just the PTSD that keeps deleting my awareness of it like some sort of computer virus.
This is so surreal that it's moved beyond terrifying and aggravating into just straight-up hilarious territory.
If I weren't so needlephobic, I'm at the point where I'd seriously consider getting myself some "Memento" style tattoos.
posted by Jacqueline at 8:10 PM on September 4 [2 favorites]
Best answer: A customizable engraved medical bracelet in something like stainless steel so you never need to take it off (and thus forget to put it back on) would be around the cost of a small tattoo, minus the needles. It is not unreasonable to have mental health diagnoses on them, particularly if you are experiencing lost time IMO. Maybe bring up the idea with your new psych NP and ask them what they think would be good to have accessible 24/7 for you or any emergency personnel.
Thank you for your updates. I hope some steadiness and consistency is in your near future! I usually make a point not to dig into an asker’s history unless they bring it up in their question, but I’ll try to remember about your request next time. Please imagine me writing in a glittery journal titled “Mizu’s AskMe Gossip” a note that says “be nosy about Jacqueline!”
posted by Mizu at 11:42 PM on September 4 [2 favorites]
Thank you for your updates. I hope some steadiness and consistency is in your near future! I usually make a point not to dig into an asker’s history unless they bring it up in their question, but I’ll try to remember about your request next time. Please imagine me writing in a glittery journal titled “Mizu’s AskMe Gossip” a note that says “be nosy about Jacqueline!”
posted by Mizu at 11:42 PM on September 4 [2 favorites]
Response by poster: So, everyone who said "that sounds more like a dissociative disorder than ADHD" turned out to be correct. Starting therapy for that soon.
posted by Jacqueline at 7:08 AM on September 25 [3 favorites]
posted by Jacqueline at 7:08 AM on September 25 [3 favorites]
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posted by Jacqueline at 2:15 PM on July 7 [4 favorites]