So what do you do if every time you go off meds it's intolerable, but almost all meds give you side effects that are also intolerable? Asking... for me. Yes I've been in therapy for years.
Mark sounds like a great guy, impressively honest and open. I won't pretend to remotely have a sense of what his experience has been like, but based on what was revealed here, I recognize some similarities to some aspects of mine.
I'm just a one-degree clinical psychologist - thank God I'm not addicted to degrees : ). However, like Mark, I was miserable in my post-adolescent years, and often depressed (at a dysthymic level). And even though I have never been formally diagnosed, I know for a fact I suffer from narcolepsy (my nickname when growing up was 'Jonah the sleeper'). I fall asleep anywhere anytime anyhow. When I started practicing, I struggled so hard because I no longer have control over my daily scheduling of activities. I have to be at work by 8am, and around 9 or 10am I start to feel a strong attack of sleep and all the attendant cognitive and physical slowing that comes with normal sleep state. I struggle to read, to comprehend, to think, to do any kind of brain work. When under this attack, I have absolutely no control over it. It'll exact its due even if only for 5 minutes. But it takes me longer to recover my alertness and sharpness afterward. And this happens like a clockwork every single day that I have to sit while working (which is what my profession entails). I've been embarrassed many times in front of clients as I battle with everything in me to beat this powerful onset of sleepiness (and it matters not a bit how many hours of sleep I had had the previous night).
I became curious at the height of my frustration with this lifetime dysfunction. Is it really narcolepsy? I had read somewhere that modafinil works fine for any condition relating to inability to stay alert and awake. I got a psychiatrist friend to do a quick review and then write me a prescription for modafinil. I took two tablets and for the first time in my life, I went a whole day without even a faint internal pressure to close my eyes in sleep. I used the med for about 4 more times and then I decided to stop it. Not for any adverse reason. I was just afraid that it worked too well to not get me hooked on it. The experience was similar to my shock when I first tried on medical glasses. But unlike glasses, drugs are not entirely beneficial in their utility. I still have the leftover from that first and last pack of modafinil I bought more than 2 years ago.
However, here's the main reason why I'm sharing this story: I suspect very strongly that there's a causal link between narcolepsy (excessive sleepiness in general) and fatigue (physical and mental) on the one hand, and with memory on the other hand. Just like you, I've struggled all my life with easy fatiguability and a traitorous memory. I'm a serial and chronic forgetter. I still avoid any kind of impromptu talk or ad-libbing because of this. And like you, I've always had to rely on copious and compulsive documentation in my clinical practice.
I've never used antidepressant or any other psychiatric drugs mostly for lack of access but also because I've never seen these functional difficulties as something that medication can fix. My life has been a long and arduous exercise in coping and compromises. And one of the greatest compromises I've had to make is to let go of career ambition. It's a necessary and vital one. There are others, equally big and consequential. But I accept them with the understanding that they ultimately, if painfully, make my life better, all other things considered.
I have an above average capacity for pain tolerance (especially of the mental and existential varieties) and I'm able to live with things that many people will find unbearable. This, I think, is what often leads so many people to be too quick to embrace quick fix solutions that drugs promise. Of course, I understand that there's a level of severity beyond which pain and dysfunction become intolerable wherein medical intervention becomes necessary. But there are many instances in which a mild tragedy is turned into a great one because the sufferer, in seeking to escape what is mild, embraces a cure that makes their quality of life worse.
Disclaimer: Psychiatric medications are a lifesaver for many, no doubt, but there's always a tiny devil in the detail.
That's really eloquent description of your experience. I am of course interested in many of these impairments that are invisible to others. People are not seeing you as the fatigue feel. They may notice you fall asleep, but they don't notice the relentless drive to close your eyes before that. Most of the time people with severe fatigue or sleepiness are affected, their home in bed, They're not out and about, they're not on their Instagram Or YouTube channel, and it's magically not when I'm not tired that I'm writing this newsletter. These impairments are hidden, and surprising when they happen to each of us. It doesn't matter how common or uncommon these experiences are, for each Of us experiencing them alone.
Part of the goal of this newsletter is reducing stigma, not just around psychiatric illness, but around illness more generally. A lot of us are wiped out, a lot of the time, and people see us only in the other time when we can pull our act together and do something.
There's a bias in our experience that I hoped to point out, and I feel like mark has done something really meaningful with his experience!
I got to meet Mark when he was visiting Australia recently - was really great getting to learn more about his work and the motivations behind it. Definitely a lot of complexity about achieving this slow tapering in practice, but we’ve got to at least try. Glad you’re getting his work out more broadly!
Ask him if thinks treating depression with TMS is also a “category error.”
There are many more parts of this interview coming. But we didn't get to that yet!
So what do you do if every time you go off meds it's intolerable, but almost all meds give you side effects that are also intolerable? Asking... for me. Yes I've been in therapy for years.
this is why Outro Health exists
They only operate in California!!
Yet
Mark sounds like a great guy, impressively honest and open. I won't pretend to remotely have a sense of what his experience has been like, but based on what was revealed here, I recognize some similarities to some aspects of mine.
I'm just a one-degree clinical psychologist - thank God I'm not addicted to degrees : ). However, like Mark, I was miserable in my post-adolescent years, and often depressed (at a dysthymic level). And even though I have never been formally diagnosed, I know for a fact I suffer from narcolepsy (my nickname when growing up was 'Jonah the sleeper'). I fall asleep anywhere anytime anyhow. When I started practicing, I struggled so hard because I no longer have control over my daily scheduling of activities. I have to be at work by 8am, and around 9 or 10am I start to feel a strong attack of sleep and all the attendant cognitive and physical slowing that comes with normal sleep state. I struggle to read, to comprehend, to think, to do any kind of brain work. When under this attack, I have absolutely no control over it. It'll exact its due even if only for 5 minutes. But it takes me longer to recover my alertness and sharpness afterward. And this happens like a clockwork every single day that I have to sit while working (which is what my profession entails). I've been embarrassed many times in front of clients as I battle with everything in me to beat this powerful onset of sleepiness (and it matters not a bit how many hours of sleep I had had the previous night).
I became curious at the height of my frustration with this lifetime dysfunction. Is it really narcolepsy? I had read somewhere that modafinil works fine for any condition relating to inability to stay alert and awake. I got a psychiatrist friend to do a quick review and then write me a prescription for modafinil. I took two tablets and for the first time in my life, I went a whole day without even a faint internal pressure to close my eyes in sleep. I used the med for about 4 more times and then I decided to stop it. Not for any adverse reason. I was just afraid that it worked too well to not get me hooked on it. The experience was similar to my shock when I first tried on medical glasses. But unlike glasses, drugs are not entirely beneficial in their utility. I still have the leftover from that first and last pack of modafinil I bought more than 2 years ago.
However, here's the main reason why I'm sharing this story: I suspect very strongly that there's a causal link between narcolepsy (excessive sleepiness in general) and fatigue (physical and mental) on the one hand, and with memory on the other hand. Just like you, I've struggled all my life with easy fatiguability and a traitorous memory. I'm a serial and chronic forgetter. I still avoid any kind of impromptu talk or ad-libbing because of this. And like you, I've always had to rely on copious and compulsive documentation in my clinical practice.
I've never used antidepressant or any other psychiatric drugs mostly for lack of access but also because I've never seen these functional difficulties as something that medication can fix. My life has been a long and arduous exercise in coping and compromises. And one of the greatest compromises I've had to make is to let go of career ambition. It's a necessary and vital one. There are others, equally big and consequential. But I accept them with the understanding that they ultimately, if painfully, make my life better, all other things considered.
I have an above average capacity for pain tolerance (especially of the mental and existential varieties) and I'm able to live with things that many people will find unbearable. This, I think, is what often leads so many people to be too quick to embrace quick fix solutions that drugs promise. Of course, I understand that there's a level of severity beyond which pain and dysfunction become intolerable wherein medical intervention becomes necessary. But there are many instances in which a mild tragedy is turned into a great one because the sufferer, in seeking to escape what is mild, embraces a cure that makes their quality of life worse.
Disclaimer: Psychiatric medications are a lifesaver for many, no doubt, but there's always a tiny devil in the detail.
That's really eloquent description of your experience. I am of course interested in many of these impairments that are invisible to others. People are not seeing you as the fatigue feel. They may notice you fall asleep, but they don't notice the relentless drive to close your eyes before that. Most of the time people with severe fatigue or sleepiness are affected, their home in bed, They're not out and about, they're not on their Instagram Or YouTube channel, and it's magically not when I'm not tired that I'm writing this newsletter. These impairments are hidden, and surprising when they happen to each of us. It doesn't matter how common or uncommon these experiences are, for each Of us experiencing them alone.
Part of the goal of this newsletter is reducing stigma, not just around psychiatric illness, but around illness more generally. A lot of us are wiped out, a lot of the time, and people see us only in the other time when we can pull our act together and do something.
There's a bias in our experience that I hoped to point out, and I feel like mark has done something really meaningful with his experience!
Thank you will share to get this word out!
That is great! Thank you!
I got to meet Mark when he was visiting Australia recently - was really great getting to learn more about his work and the motivations behind it. Definitely a lot of complexity about achieving this slow tapering in practice, but we’ve got to at least try. Glad you’re getting his work out more broadly!
So what does he recommend? Psychotherapy?
I know the pharmaceutical cascade too well. When the doctors started pushing benzos as the "only option," I refused. No regrets!