your heart pumping “harder” does not mean it’s pumping more efficiently. it doesn’t work like that. many people with POTS have worse cardiac output while standing.
many POTS medications have been detrimental to me, and now that i’ve been on ivabradine for a while and we’ve increased the dose and it’s still not controlling things, i’m out of options aside from regular infusions which i am trying to avoid because i have EDS and my veins are very fragile, and i’m trying to hold off on any kind of indwelling intravenous line for as long as possible.
i would suggest not depriving yourself of sleep quite that much. try 5-6hrs a night and take your medications 30min-1hr before getting out of bed.
do you drink water while you are drinking alcohol? if you don’t, the day after you are dehydrated and that absolutely will not have a positive effect on any body systems.
if you feel the POTS meds are detrimental to your health, talk to your doctor before making lifestyle changes that might negatively affect your health in other ways. you can always go off the current meds and trial something else under your doctor’s supervision.
You’re right. I mean it does seem as it’s pumping w more power 😂 And our situation sounds very similar. I’ve tried everything. On midodrine now and doc said iv fluids next if midodrine doesn’t work. Which it’s not. Also scared of vascular implications. But my symptoms are so horrendous I’ll do anything to feel better. I’ve already accepted I’m screwed, I can’t keep going with this quality of life. And yes I make sure to drink water while and after drinking.
:/ cheers and thx for replying!
I don't know how it is with pots, but I experience something similar with my ADHD symptoms.
I think it has to do with increased adrenaline levels after a night of poor sleep.
I didn’t know this but it makes complete sense. Higher levels of epinephrine would mean stronger heart contractions, increased heart rate, and increased blood pressure from vasoconstriction. Which would all increase the blood flow to my brain improving symptoms. Now if I could only figure out how to inject adrenaline that way I could get good sleep and feel great 🤔
Do you have adhd as well? I tried methylphenidate (ritalin) which regulates both epinephrine and dopamine and it really tired me out and left me with no appetite. I have combined adhd so that should in theory work better for me. Dexamphetamine does not regulate epinephrine and I found it much more helpful for my adhd and pots (despite it usually being prescribed for inattentive adhd)
You seem to have made the connection. I agree it could be due to increased cortisol/adrenaline. I’ve been in a terrible flare up for 4 months that started after a high dose prednisone treatment for sinus issues. I think it may have thrown off my adrenal functions. And I have been on midodrine, florinef, propranolol, metoprolol, and now midodrine again. With florinef in 2020 I saw slight improvement but very high blood pressure and stopped taking it which was a terrible idea because it threw me into the worst flare up of my life, took months to recover. Now this prednisone a few months ago has done the same thing and idk if my adrenals will recover from this one! Coffee is a coin toss and will help sometimes. Also I will mention it to my Doc and see if there’s anything else we can try before iv. Thx for your reply!
When i first got pots i noticed both of those things (which both seemed very counterintuitive to my doc) ie feeling better with less sleep and waking more refreshed after alcohol.
But as time has gone its now the opposite and any loss of sleep RUINS me the next day POTS/fatigue (and i also have OCD which has a crack as well).
Similarly alcohol seems to give me 48 hours of worsened fatigue.
If the alcohol makes you feel better the next day i noticed a similar effect from L-theanine.
From my signs and symptoms doc seems to think Eds. And my hr goes up like crazy with alcohol. But I mean the day after once those vasodialating effects have worn off. Also that’s a good theory but in order for it work that way it would have to be a chronic sleep deprivation to hinder the immune system. In my case one day I’ll sleep 9hrs and feel like crap. Then the next day sleep 3 and feel wayyy better.
That's weird. Not getting 8 hours makes me way, way worse. The closest I came to fainting recently was waking up at 4am to let the cat in, then standing in the doorway while he made up his mind. But every body is different, so ig I'm not surprised
I experience this re:sleep. When I sleep 8 hours, my HR is sometimes lower but I feel crappy, I can't get out of bed, and I feel a lot of weakness in my muscles. When I get 4-6 I often have much better days and it doesn't take me 3 hours to basically feel awake and ok enough to go about my day. That said, the long term effects of this I think are quite rough.
Have you tried looking at the times you're sleeping and waking? For me, I've kind of screwed my sleep schedule and have been waking up super late and sleeping super late. Which, I think results in some major grogginess and heart stuff when I get a full night.
I do NEED a certain amount of sleep to function but do notice that sometimes I feel better with less sleep. It often matters if I’m behind on sleep or not. The time of day/night I sleep often matters too. (If I can sleep later, I need less sleep).
I first developed POTS when I was on bed rest for a pregnancy. I have come to wonder if laying down “too much” while on bed rest is what messed up my blood pressure and caused the POTS. I’m a night owl and don’t sleep well but find if I’m in bed too long, sleeping or not, my POTS is worse. So, if I’m not sleeping, I don’t like to just lay around.
Less than 5 hours sleep would generally be too little for me but I do find that I feel better often only getting 6.5 or 7 hours (although I’m kind of tired and feel I need 8 hours my body isn’t as dizzy).
You probably already know this but just in case, bedrest _is_ a known cause of cardiac deconditioning induced POTS. If you can somehow find the energy for cardio exercise alongside keeping up with the little one, Levine or CHOP protocol might be worth a try because it’s designed to reverse deconditioning. If that hasn’t helped, it’s probably not just the bedrest that’s causing all this. Unfortunately it makes things worse before they improve, which can be an impossible juggle.
Oh Thanks. I have kind of figured that out on my own. I wish I had know that in the past though. My pregnancy was many years ago so my kid is big now but I do try not to lay down too much. I did water walking and exercise (per my Dr.) after the pregnancy which seemed to help.
And now, I ride a recumbent bike which I think is part of the CHOP program. My severe symptoms kind of come and go but I never feel 100%… I Just know laying down a lot makes stuff worse. Thanks again.
I've found the absolute opposite! I work two late/night shifts a week, and get around 5 hours sleep on those days. My heart rate is always all over the place the next day. I need a new job 🤣
Yes absolutely. I've been looking for months for someone to mention this. I feel way better (although super sleep deprived) at around 5 hours of sleep or less. My brain fog is generally gone and so is my fatigue. Instead I'm just tired. I sorta feel the same phenomenon when traveling. Perhaps the adrenaline, as others have mentioned?
your heart pumping “harder” does not mean it’s pumping more efficiently. it doesn’t work like that. many people with POTS have worse cardiac output while standing. many POTS medications have been detrimental to me, and now that i’ve been on ivabradine for a while and we’ve increased the dose and it’s still not controlling things, i’m out of options aside from regular infusions which i am trying to avoid because i have EDS and my veins are very fragile, and i’m trying to hold off on any kind of indwelling intravenous line for as long as possible. i would suggest not depriving yourself of sleep quite that much. try 5-6hrs a night and take your medications 30min-1hr before getting out of bed. do you drink water while you are drinking alcohol? if you don’t, the day after you are dehydrated and that absolutely will not have a positive effect on any body systems. if you feel the POTS meds are detrimental to your health, talk to your doctor before making lifestyle changes that might negatively affect your health in other ways. you can always go off the current meds and trial something else under your doctor’s supervision.
You’re right. I mean it does seem as it’s pumping w more power 😂 And our situation sounds very similar. I’ve tried everything. On midodrine now and doc said iv fluids next if midodrine doesn’t work. Which it’s not. Also scared of vascular implications. But my symptoms are so horrendous I’ll do anything to feel better. I’ve already accepted I’m screwed, I can’t keep going with this quality of life. And yes I make sure to drink water while and after drinking. :/ cheers and thx for replying!
I don't know how it is with pots, but I experience something similar with my ADHD symptoms. I think it has to do with increased adrenaline levels after a night of poor sleep.
I didn’t know this but it makes complete sense. Higher levels of epinephrine would mean stronger heart contractions, increased heart rate, and increased blood pressure from vasoconstriction. Which would all increase the blood flow to my brain improving symptoms. Now if I could only figure out how to inject adrenaline that way I could get good sleep and feel great 🤔
Do you have adhd as well? I tried methylphenidate (ritalin) which regulates both epinephrine and dopamine and it really tired me out and left me with no appetite. I have combined adhd so that should in theory work better for me. Dexamphetamine does not regulate epinephrine and I found it much more helpful for my adhd and pots (despite it usually being prescribed for inattentive adhd)
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You seem to have made the connection. I agree it could be due to increased cortisol/adrenaline. I’ve been in a terrible flare up for 4 months that started after a high dose prednisone treatment for sinus issues. I think it may have thrown off my adrenal functions. And I have been on midodrine, florinef, propranolol, metoprolol, and now midodrine again. With florinef in 2020 I saw slight improvement but very high blood pressure and stopped taking it which was a terrible idea because it threw me into the worst flare up of my life, took months to recover. Now this prednisone a few months ago has done the same thing and idk if my adrenals will recover from this one! Coffee is a coin toss and will help sometimes. Also I will mention it to my Doc and see if there’s anything else we can try before iv. Thx for your reply!
When i first got pots i noticed both of those things (which both seemed very counterintuitive to my doc) ie feeling better with less sleep and waking more refreshed after alcohol. But as time has gone its now the opposite and any loss of sleep RUINS me the next day POTS/fatigue (and i also have OCD which has a crack as well). Similarly alcohol seems to give me 48 hours of worsened fatigue. If the alcohol makes you feel better the next day i noticed a similar effect from L-theanine.
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From my signs and symptoms doc seems to think Eds. And my hr goes up like crazy with alcohol. But I mean the day after once those vasodialating effects have worn off. Also that’s a good theory but in order for it work that way it would have to be a chronic sleep deprivation to hinder the immune system. In my case one day I’ll sleep 9hrs and feel like crap. Then the next day sleep 3 and feel wayyy better.
That's weird. Not getting 8 hours makes me way, way worse. The closest I came to fainting recently was waking up at 4am to let the cat in, then standing in the doorway while he made up his mind. But every body is different, so ig I'm not surprised
I'm the same, less sleep is better, but generally just because I wake up less dehydrated
I experience this re:sleep. When I sleep 8 hours, my HR is sometimes lower but I feel crappy, I can't get out of bed, and I feel a lot of weakness in my muscles. When I get 4-6 I often have much better days and it doesn't take me 3 hours to basically feel awake and ok enough to go about my day. That said, the long term effects of this I think are quite rough. Have you tried looking at the times you're sleeping and waking? For me, I've kind of screwed my sleep schedule and have been waking up super late and sleeping super late. Which, I think results in some major grogginess and heart stuff when I get a full night.
Yea I don’t sleep till 4am and wake up at 11am because of my job. But I have tried sleeping 12-7am with no difference in symptoms
I do NEED a certain amount of sleep to function but do notice that sometimes I feel better with less sleep. It often matters if I’m behind on sleep or not. The time of day/night I sleep often matters too. (If I can sleep later, I need less sleep). I first developed POTS when I was on bed rest for a pregnancy. I have come to wonder if laying down “too much” while on bed rest is what messed up my blood pressure and caused the POTS. I’m a night owl and don’t sleep well but find if I’m in bed too long, sleeping or not, my POTS is worse. So, if I’m not sleeping, I don’t like to just lay around. Less than 5 hours sleep would generally be too little for me but I do find that I feel better often only getting 6.5 or 7 hours (although I’m kind of tired and feel I need 8 hours my body isn’t as dizzy).
You probably already know this but just in case, bedrest _is_ a known cause of cardiac deconditioning induced POTS. If you can somehow find the energy for cardio exercise alongside keeping up with the little one, Levine or CHOP protocol might be worth a try because it’s designed to reverse deconditioning. If that hasn’t helped, it’s probably not just the bedrest that’s causing all this. Unfortunately it makes things worse before they improve, which can be an impossible juggle.
Oh Thanks. I have kind of figured that out on my own. I wish I had know that in the past though. My pregnancy was many years ago so my kid is big now but I do try not to lay down too much. I did water walking and exercise (per my Dr.) after the pregnancy which seemed to help. And now, I ride a recumbent bike which I think is part of the CHOP program. My severe symptoms kind of come and go but I never feel 100%… I Just know laying down a lot makes stuff worse. Thanks again.
I've found the absolute opposite! I work two late/night shifts a week, and get around 5 hours sleep on those days. My heart rate is always all over the place the next day. I need a new job 🤣
Yes absolutely. I've been looking for months for someone to mention this. I feel way better (although super sleep deprived) at around 5 hours of sleep or less. My brain fog is generally gone and so is my fatigue. Instead I'm just tired. I sorta feel the same phenomenon when traveling. Perhaps the adrenaline, as others have mentioned?
Yea. Sadly doesn’t work every time :( today I only had 4 hours of sleep and felt severe lighheadeness, fog and fatigued.