I had one, many years ago. It is distressing to watch, and more distressing to sit on. There was no information at all available to me at the time, and every vet I consulted looked at me like I was imagining it (I wasn’t). I was pretty much on my own trying to deal with it. (This would have been 40+ years ago). All I can say is “treat the symptoms” and try to supply what he needs to try to keep him safe. A strong stall door, with padding (a neck cradle would be nice) for him to use. I used to use stable bandages and figure 8 bandages on the knees, to try to splint them closed with a bit of pressure on the fronts of the knee joints. Seemed to help a bit. Keep the stall deep bedded. This all started when he was a 3 yr old. He was a TB, but unraced, we bought him as a yearling. I was sitting on him the first time it happened, I was 14 years old. It was a couple of years before I realized that this was something that was really happening, I thought it was a “one off” at first. I think it probably got worse over the years.
He would lay down to roll, then lay flat for a few minutes. Then moan and groan, and get up again, “forcing” himself to get up even though it looked like he wished he could stay down. He would not sleep laying down, ever. I always wondered if there was a breathing problem with his weight on his chest when laying down. He would sometimes sit for a while before getting up (hock and/or hind end trouble). He was kept at home so I saw him 24/7/12 and did all care myself, always with a soft paddock available as well as a large stall. He would fall down in both places. He would use the stall door and the paddock fences as supports to hold himself up while sleeping. Definitely sleep deprived.
It’s a strange malady, it’s not “narcolepsy” like is seen in dogs (in which much of the experimentation has been done), it’s different from that. My horse also had unsoundness issues, hocks and pelvic issues (also mostly undiagnosed at the time), possibly “kissing spines” (which was not something that was diagnosed at the time as far as I know). My horse lived on bute for many years, and was fine with this, no side effects. This horse was my main show horse through my junior years, from hunters, equitation, to the jumper divisions and was a local Grand Prix jumper for the last 5 years of his career. So, it is possible to manage the problem, to some extent, at least for a while. My horse was not long lived, he was put down at 14 years old, after 2 years of pasture retirement. He presented with ataxia one morning, no one knows why, and was put down that day. Vet suggested a stroke at the time but it could have been anything. Don’t know if it was related to the falling down issues, or if he injured himself while falling down (broken neck?), or completely unrelated.
I hope you can get more information than I could at the time. It is a fairly rare problem I think, though I have heard of it happening more often in old horses.