...huh. Yes, I have idiopathic hypersomnia, and I've very rarely run into anyone who even knows what it is, let alone being diagnosed with it. Daily torture is a good description, and something...
...huh. Yes, I have idiopathic hypersomnia, and I've very rarely run into anyone who even knows what it is, let alone being diagnosed with it.
Daily torture is a good description, and something I've found particularly tricky is making most people - people already familiar with poor sleep quality in their own lives, but at a different level - understand how much it can truly damage someone. They're often coming from a good place, trying to relate and sympathise, but I've had a lot of conversations analogous to this.
Skip this bleak bit if you'd prefer to just get the hopeful ending
When it comes to making people understand, I've still yet to find a tactful way of saying "not only have the mood swings put me in hospital more than once for my own protection, if I get only 8 hours of sleep for more than a few days running I'll start actively hallucinating - but I still have the same amount to do in my day that you do and I cannot get the 12 hours I need, so I'm constantly trying to walk the line of compromise between having time to fulfil my basic needs and keeping my mental and physical health above the line where it's just very bad rather than actively dangerous".
Even putting aside the risk of suicide and the physical toll, my life was being taken away a few hours a day. If I lived to 70, I was still looking down the barrel of a life 30% "shorter" than peers of the same age, but people just read it as laziness.
The incredibly good news, news I absolutely wouldn't have believed if someone told me it was possible even a year ago, is that after many, many (mis)diagnoses and ineffective attempts at treatment over literally 15 years I do seem to have found something that works for me: lisdexamfetamine (brand name Vyvanse/Elvanse, depending where you are, but they're both the same chemical from the same manufacturer).
For context: I'm 35, and have been actively in the mental health system since my early 20s. Almost every specialist I've seen has looked at my Venn diagram of symptoms and believed I was suffering from the condition they primarily work with, and so started treatment accordingly. Eight or nine different psychiatric medications, each tried over months or sometimes years, had no effect at all - not that they didn't help, but they were literally imperceptible even after ramping up to the maximum human safe doses. One did have an effect, which was to hospitalise me. Therapy of all the various flavours seemed to hit an impasse at "well yes, by definition I'm ok enough to have this conversation now, but I'm worried about the next time my brain randomly betrays me in a way beyond my control and I'm not sure how talking will help that part".
Four or so years ago I was diagnosed with IH after a sleep study, and from that point I tried pregabalin (unsuccessfully), before losing two years to pandemic-related waiting lists. For whatever reason I had more faith in the IH diagnosis than any of the others I'd received over the years - maybe because it was the only one that came with a brainwave scan they could point to. Not sure if that's an unhelpful bias on my part or a useful preference for hard evidence, but I mention it because really we still can't know if IH is causing all the other symptoms or if I just won the mental health condition sweepstakes and also have one or more of the other diagnoses too.
It was pure coincidence that an ADHD diagnosis happened to come along for me last year - I'd been on a waiting list for multiple years (yay adult ADHD shortage), had basically forgotten about it, and was focusing on the sleep question anyway. The first sleep specialist was uncertain about stimulants as an option, quite reasonably wanting to focus on improving sleep and worrying they'd do the exact opposite. By the time they did decide I had ADHD, I'd already tried and given up taking enough other drugs that there was a definite increase in willingness to try anything, on my part and theirs.
And it worked. In the space of a month, I was comfortably sleeping 7-8 hours and feeling well rested. I've literally never experienced that in my life before. Mood swings are all but gone, baseline happiness is up an incredible amount, physical health is the best it's been since I was 22, and I'm juuust getting to the point now it's been long enough that I more or less believe it's not all just going away one day. Don't know if I have ADHD, IH, or both. I'm inclined to trust the IH diagnosis based on the sleep study data, but I can believe it's not the only thing going on in there. Whatever the ultimate truth is, I'm better in a way that I had long since given up hope on.
I've still got my share of general problems, but I'm going back to therapy next month, and it feels like that'll actually be something I can make proper use of this time.
...huh. Yes, I have idiopathic hypersomnia, and I've very rarely run into anyone who even knows what it is, let alone being diagnosed with it.
Daily torture is a good description, and something I've found particularly tricky is making most people - people already familiar with poor sleep quality in their own lives, but at a different level - understand how much it can truly damage someone. They're often coming from a good place, trying to relate and sympathise, but I've had a lot of conversations analogous to this.
Skip this bleak bit if you'd prefer to just get the hopeful ending
When it comes to making people understand, I've still yet to find a tactful way of saying "not only have the mood swings put me in hospital more than once for my own protection, if I get only 8 hours of sleep for more than a few days running I'll start actively hallucinating - but I still have the same amount to do in my day that you do and I cannot get the 12 hours I need, so I'm constantly trying to walk the line of compromise between having time to fulfil my basic needs and keeping my mental and physical health above the line where it's just very bad rather than actively dangerous".
Even putting aside the risk of suicide and the physical toll, my life was being taken away a few hours a day. If I lived to 70, I was still looking down the barrel of a life 30% "shorter" than peers of the same age, but people just read it as laziness.
The incredibly good news, news I absolutely wouldn't have believed if someone told me it was possible even a year ago, is that after many, many (mis)diagnoses and ineffective attempts at treatment over literally 15 years I do seem to have found something that works for me: lisdexamfetamine (brand name Vyvanse/Elvanse, depending where you are, but they're both the same chemical from the same manufacturer).
For context: I'm 35, and have been actively in the mental health system since my early 20s. Almost every specialist I've seen has looked at my Venn diagram of symptoms and believed I was suffering from the condition they primarily work with, and so started treatment accordingly. Eight or nine different psychiatric medications, each tried over months or sometimes years, had no effect at all - not that they didn't help, but they were literally imperceptible even after ramping up to the maximum human safe doses. One did have an effect, which was to hospitalise me. Therapy of all the various flavours seemed to hit an impasse at "well yes, by definition I'm ok enough to have this conversation now, but I'm worried about the next time my brain randomly betrays me in a way beyond my control and I'm not sure how talking will help that part".
Four or so years ago I was diagnosed with IH after a sleep study, and from that point I tried pregabalin (unsuccessfully), before losing two years to pandemic-related waiting lists. For whatever reason I had more faith in the IH diagnosis than any of the others I'd received over the years - maybe because it was the only one that came with a brainwave scan they could point to. Not sure if that's an unhelpful bias on my part or a useful preference for hard evidence, but I mention it because really we still can't know if IH is causing all the other symptoms or if I just won the mental health condition sweepstakes and also have one or more of the other diagnoses too.
It was pure coincidence that an ADHD diagnosis happened to come along for me last year - I'd been on a waiting list for multiple years (yay adult ADHD shortage), had basically forgotten about it, and was focusing on the sleep question anyway. The first sleep specialist was uncertain about stimulants as an option, quite reasonably wanting to focus on improving sleep and worrying they'd do the exact opposite. By the time they did decide I had ADHD, I'd already tried and given up taking enough other drugs that there was a definite increase in willingness to try anything, on my part and theirs.
And it worked. In the space of a month, I was comfortably sleeping 7-8 hours and feeling well rested. I've literally never experienced that in my life before. Mood swings are all but gone, baseline happiness is up an incredible amount, physical health is the best it's been since I was 22, and I'm juuust getting to the point now it's been long enough that I more or less believe it's not all just going away one day. Don't know if I have ADHD, IH, or both. I'm inclined to trust the IH diagnosis based on the sleep study data, but I can believe it's not the only thing going on in there. Whatever the ultimate truth is, I'm better in a way that I had long since given up hope on.
I've still got my share of general problems, but I'm going back to therapy next month, and it feels like that'll actually be something I can make proper use of this time.