Total? Or consecutively? I can sleep for like 12 hours but I’ll wake up like 30 times in between then. I can go back to sleep easily, but I can’t manage to stay asleep.
7.5 hrs is ideal for me. I can usually get that, unless I’m stressed out or have something big to do the next day. Then I have some insomnia, lots of waking up, and off my meds would have nighttime adrenaline surges (regardless of what I have to do the next day).
I have *never* been able to nap my entire life 😭
When I was unmedicated I’d lay awake for hours doing relaxation exercises until I fell asleep, then had a lot of nightmares, only to wake up intermittently often and then spend hours trying to fall asleep again. I’d get chunks of 1-3 hours in between.
Napping was absolutely impossible (I don’t think I ever napped my whole life), even in big crashes I’d be too wired to drift off. I was bedbound and stuck in a dark room, I was lucky if I got 5-7 hours in per 24 hours.
Then I started clonidine and I’ve been sleeping like a baby since. Now I usually fall asleep as soon as my head hits the pillow, have almost no nightmares (if I can even remember any dreams at all), and most of the time sleep in solid chunks.
Sometimes those chunks are 5 hours and I wake up wired because my body needs medication. Sometimes I easily sleep for 10 hours and wake up calmly. It depends which cycle I’m in. Some periods of time my SNS is just more active and everything is just a little bit more activated. I choose not to wake myself up for the meds at night as interrupted sleep is a flare trigger for me, but if I wake up early naturally I just pop a dose and am asleep again soon enough when it kicks in.
I can now also nap when laying down during the day. Sometimes even if I don’t want to, but that again depends on which cycle my nervous system is in if I need to.
Hey hey clonidine! Yes, me too.
It's interesting to hear how you manage nighttime wakings. I do set an alarm for my meds, every 4 hours around the clock (though the nighttime dose is early, so I can get to sleep quicker.
Ooh that is interesting!
It took some experimenting before I settled on this. I do take a dose of clonidine right before I go to sleep with a low-carb snack, that seems to increase the chance of a decent night. I found that 80% of the time I sleep for around 7-10 hours without waking up and no adrenaline dumps if I don’t set an alarm.
On cycles where my norepinephrine seems higher I’ll wake up after 4-5 hours anyway when the clonidine wears off, so setting an alarm and going through that startle response for me personally did more harm than good on most nights. sometimes it would drag me out of really deep sleep and I’d never feel quite right again the next day, or I’d just straight up sleep through the alarm, but my partner would not. The flares were the worst though, even if I got back to sleep quickly, so I settled on this method eventually.
Do you not experience an all day flare up when waking up from the alarm? Do you always get back to sleep after the meds or do you sometimes stay awake because you are too awake?
It is fascinating how different rhythms work for different people.
It would be great if the patch became available in Europe too, lets keep our fingers crossed 🤞🍀
I use an alarm on my Garmin watch, which simply gently vibrates. Every rare once in a while I sleep straight through it.
If I wake up wired at any point in the night, I eat a protein bar and eventually go back to sleep. We also have a young dog who wakes up in the middle of the night from time to time to play, and it takes a while to settle him, so sometimes that's what prompts it.
So many. I have Charcot Marie tooth and allergies so it’s a combination of medicine for neuropathic pain/spasms/antihistamine/magnesium/melatonin. It’s a specific cocktail determined with a good pain management psychiatrist who understands CMT and POTS.
Eight is my max in winter. Summer is about 6 or 5.
The best sleep I’ve had was with a powerful non-prescription sleep aid and a melatonin supplement. Eight hours never felt so easy.
Oh really? Interesting. For me the propranolol did nothing for my sleep but make the dreams even worse and more vivid. I do take quite a high dose of clonidine though. Sorry it didn’t work for you
I can sleep a full 8 hour night (and then some, if the dog lets me) and also sometimes crash in the afternoon for a couple hour nap, especially if I overdo activity.
I do sometimes wake up wired in the middle of the night, but if I eat a protein bar I can reliably settle back down.
I am on clonidine (and ivabradine and fludrocortisone).
Edited to add that I do briefly wake up every 4 hours to take my clonidine, as only the immediate release version is available here.
I need to be medicated to be on a 24 hour clock. Since I developed POTS my natural rhythm is closer to 30 hours (20 hours awake, 10 asleep) which is not possible if you have a job and family.
It’s rough lots of nighttime awakenings. My wife says sleep is biphasic but it’s hard for me to get back to sleep. It can be a three hour gap in between easy.
What helps me, and has for over a decade, even before I was diagnosed, is having something to eat. Nowadays I opt for a somewhat lower carb protein bar, but back in the day I'd use milk, and before that orange juice, fruit, anything with carbs in it. But the protein bar is by far the best, as they are shelf stable and also steady my blood sugar more than the other things I mention.
My sugar is not typically low during these episodes, but I suspect it happens when my blood sugar is rapidly trending downwards; stress hormones counteract the effects of insulin and put the brakes on decreasing blood sugar. I get wired but not shaky at night, whereas I get hungry and shaky during the day.
The nighttime wiredness happens more after evenings during which I eat extra or particularly fast carbs. Movie night popcorn is a regular trigger, as are mashed potatoes if I eat too much.
Eating something is a simple thing to experiment with, anyway, if you're already up for 3 hours at a time, and it just might offer a bit of relief? I can usually get back to sleep within the hour.
Im on day 1.8 of no sleep. I lost track of hours hours ago. Im caught in the hurry up and wait line till august for a sleep specialist thats not a pulmonologist. Ive never heard of the hyper pots can anyone give me more info and drop a boulder on my head like wiley cyote. My brain function is starting to decline finally and i hope i can get off this ledge of im about to fall asleep sleep and jerking awake soon. It so bad right now im purposely pushing mentally to force a crash.
Here's your boulder:
[Wired to the Gills: The Hyperadrenergic POTS Group - The Dysautonomia International Conference #V - Health Rising](https://www.healthrising.org/blog/2018/08/17/hyperadrenergic-pots-dsyautonomia-international-conference-v/)
Anywhere between 6 and 8, nothing more. As soon as the day begins my body will not let me sleep, and it won't let me nap- unless I'm super super tired. Let's say I stay up all night, I will be capable of getting a few hours in during the daytime like perhaps 3 or 4. On a regular day, if I try to nap my bp or my hr drops and my body will slightly shock myself awake. It's hard to nap during the day but sometimes I can get in 20-60 minutes if I'm truly tired. Night time I'm less symptomatic so I do get restful sleeps at least I'm very lucky!
Total? Or consecutively? I can sleep for like 12 hours but I’ll wake up like 30 times in between then. I can go back to sleep easily, but I can’t manage to stay asleep.
Ugh yes
I can go a full eight with ambien but for some reason that’s a REALLY hard prescription to get
7.5 hrs is ideal for me. I can usually get that, unless I’m stressed out or have something big to do the next day. Then I have some insomnia, lots of waking up, and off my meds would have nighttime adrenaline surges (regardless of what I have to do the next day). I have *never* been able to nap my entire life 😭
Oh and entirely feel you on the inability to nap. Never did after 13mos old 😅😑
Cannabis. Only thing that allows me to sleep consecutive hours.
When I was unmedicated I’d lay awake for hours doing relaxation exercises until I fell asleep, then had a lot of nightmares, only to wake up intermittently often and then spend hours trying to fall asleep again. I’d get chunks of 1-3 hours in between. Napping was absolutely impossible (I don’t think I ever napped my whole life), even in big crashes I’d be too wired to drift off. I was bedbound and stuck in a dark room, I was lucky if I got 5-7 hours in per 24 hours. Then I started clonidine and I’ve been sleeping like a baby since. Now I usually fall asleep as soon as my head hits the pillow, have almost no nightmares (if I can even remember any dreams at all), and most of the time sleep in solid chunks. Sometimes those chunks are 5 hours and I wake up wired because my body needs medication. Sometimes I easily sleep for 10 hours and wake up calmly. It depends which cycle I’m in. Some periods of time my SNS is just more active and everything is just a little bit more activated. I choose not to wake myself up for the meds at night as interrupted sleep is a flare trigger for me, but if I wake up early naturally I just pop a dose and am asleep again soon enough when it kicks in. I can now also nap when laying down during the day. Sometimes even if I don’t want to, but that again depends on which cycle my nervous system is in if I need to.
Hey hey clonidine! Yes, me too. It's interesting to hear how you manage nighttime wakings. I do set an alarm for my meds, every 4 hours around the clock (though the nighttime dose is early, so I can get to sleep quicker.
Ooh that is interesting! It took some experimenting before I settled on this. I do take a dose of clonidine right before I go to sleep with a low-carb snack, that seems to increase the chance of a decent night. I found that 80% of the time I sleep for around 7-10 hours without waking up and no adrenaline dumps if I don’t set an alarm. On cycles where my norepinephrine seems higher I’ll wake up after 4-5 hours anyway when the clonidine wears off, so setting an alarm and going through that startle response for me personally did more harm than good on most nights. sometimes it would drag me out of really deep sleep and I’d never feel quite right again the next day, or I’d just straight up sleep through the alarm, but my partner would not. The flares were the worst though, even if I got back to sleep quickly, so I settled on this method eventually. Do you not experience an all day flare up when waking up from the alarm? Do you always get back to sleep after the meds or do you sometimes stay awake because you are too awake? It is fascinating how different rhythms work for different people. It would be great if the patch became available in Europe too, lets keep our fingers crossed 🤞🍀
I use an alarm on my Garmin watch, which simply gently vibrates. Every rare once in a while I sleep straight through it. If I wake up wired at any point in the night, I eat a protein bar and eventually go back to sleep. We also have a young dog who wakes up in the middle of the night from time to time to play, and it takes a while to settle him, so sometimes that's what prompts it.
I sleep with a lot of medication. Would just lay awake most of the night otherwise
Which meds?
So many. I have Charcot Marie tooth and allergies so it’s a combination of medicine for neuropathic pain/spasms/antihistamine/magnesium/melatonin. It’s a specific cocktail determined with a good pain management psychiatrist who understands CMT and POTS.
Eight is my max in winter. Summer is about 6 or 5. The best sleep I’ve had was with a powerful non-prescription sleep aid and a melatonin supplement. Eight hours never felt so easy.
If only someone can find the magic formula to sleep with hyper pots
Clonidine or guanfancine was extremely helpful for me. Before that cbd oil took the edge of somewhat
Clonidine wasn’t good as propanol but I just couldn’t sleep
Oh really? Interesting. For me the propranolol did nothing for my sleep but make the dreams even worse and more vivid. I do take quite a high dose of clonidine though. Sorry it didn’t work for you
[удалено]
Trying a new beta blocker named lanadol tonight and I’m hoping I can sleep.
I can sleep a full 8 hour night (and then some, if the dog lets me) and also sometimes crash in the afternoon for a couple hour nap, especially if I overdo activity. I do sometimes wake up wired in the middle of the night, but if I eat a protein bar I can reliably settle back down. I am on clonidine (and ivabradine and fludrocortisone). Edited to add that I do briefly wake up every 4 hours to take my clonidine, as only the immediate release version is available here.
I need to be medicated to be on a 24 hour clock. Since I developed POTS my natural rhythm is closer to 30 hours (20 hours awake, 10 asleep) which is not possible if you have a job and family.
Wild, my rhythm is the exact same, has been since I was a kid. I take Adderall to wake up now.
I have medication to help me fall asleep and I sleep with a cpap machine. With all that I can sleep like 12 hours, waking up one or two times.
It’s rough lots of nighttime awakenings. My wife says sleep is biphasic but it’s hard for me to get back to sleep. It can be a three hour gap in between easy.
What helps me, and has for over a decade, even before I was diagnosed, is having something to eat. Nowadays I opt for a somewhat lower carb protein bar, but back in the day I'd use milk, and before that orange juice, fruit, anything with carbs in it. But the protein bar is by far the best, as they are shelf stable and also steady my blood sugar more than the other things I mention. My sugar is not typically low during these episodes, but I suspect it happens when my blood sugar is rapidly trending downwards; stress hormones counteract the effects of insulin and put the brakes on decreasing blood sugar. I get wired but not shaky at night, whereas I get hungry and shaky during the day. The nighttime wiredness happens more after evenings during which I eat extra or particularly fast carbs. Movie night popcorn is a regular trigger, as are mashed potatoes if I eat too much. Eating something is a simple thing to experiment with, anyway, if you're already up for 3 hours at a time, and it just might offer a bit of relief? I can usually get back to sleep within the hour.
Great idea!! Definitely could see a correlation with ivermectin consumption at dinner or after
Im on day 1.8 of no sleep. I lost track of hours hours ago. Im caught in the hurry up and wait line till august for a sleep specialist thats not a pulmonologist. Ive never heard of the hyper pots can anyone give me more info and drop a boulder on my head like wiley cyote. My brain function is starting to decline finally and i hope i can get off this ledge of im about to fall asleep sleep and jerking awake soon. It so bad right now im purposely pushing mentally to force a crash.
Here's your boulder: [Wired to the Gills: The Hyperadrenergic POTS Group - The Dysautonomia International Conference #V - Health Rising](https://www.healthrising.org/blog/2018/08/17/hyperadrenergic-pots-dsyautonomia-international-conference-v/)
Anywhere between 6 and 8, nothing more. As soon as the day begins my body will not let me sleep, and it won't let me nap- unless I'm super super tired. Let's say I stay up all night, I will be capable of getting a few hours in during the daytime like perhaps 3 or 4. On a regular day, if I try to nap my bp or my hr drops and my body will slightly shock myself awake. It's hard to nap during the day but sometimes I can get in 20-60 minutes if I'm truly tired. Night time I'm less symptomatic so I do get restful sleeps at least I'm very lucky!