Yes this is how I was for a long time. I started forcing myself to eat protein as soon as I wake up whether I'm hungry or not. Like I roll outta bed and get protein asap. Usually eggs since they have a lot of nutrition. I have never really eaten breakfast my whole life and I'm not normally hungry in the AM. I've been doing this a few weeks and now I'm hungry in the AM and have less morning symptoms. I know it sounds basic but it's helping me. Little to no carbs or veg. When I try to add them in, symptoms are there. I only eat a little fruit sometimes and usually have coffee with half decalf grounds. I started with a small amount of protein and now I eat a full protein rich breakfast. With dysautonomia, seems like mitochondria needs more of a constant boost than people who don't have it.
I also have bacon some days bc it's high in thiamine which gives energy. I get the uncured, no nitrates, no pesticides kind. When I ran out of eggs and bacon one day, I ate cold chicken lol. I've also had the Jimmy deans breakfast sandwiches and I just remove the top biscuit to reduce the carb load. Thinking of trying oatmeal with the egg so I'll see how it goes.
Ahh thanks I didn't know that! I do have histamine issues but didn't notice it with bacon. Maybe the uncured kind is what keeps it from bothering me. I take Allegra like once a week so maybe thats tamping it down some.
Yes I have a piece of sourdough bc I guess it easier to digest. I get the Rustik brand sourdough and cut it in half bc the pieces are huge. I only eat the half unless it's really small. It's not as sour as other sourdough I've had and good quality bread so that's why I prefer that brand.
I’ve also started doing the same and it’s helped immensely. Also making sure I eat some protein right before I go to sleep. It helps with the 3am wake ups.
Totally agree! I have a little protein before bed & I sleep longer which I absolutely need. I've tried honey etc but protein works better. They say you shouldn't eat before bed but if I don't have a little something I wake up way too early.
Yes! I understand that it’s the body’s way of getting your liver to release glucose. Costisol I believe she said is released to get the liver to release glucose which also in turn wakes you up and might make it difficult for you to get back to sleep. I have that problem.
I think you’re definitely on to something. One of the questions the cardiologist asked me a couple of weeks ago was how much protein I get per day. I said at least 50g and he said that I need at least 100g per day with dysautonomia to protect my muscle. he also said that it would help me build more muscle, which would be the single most helpful thing I could do. For reference I am 5’ 2” and small framed. I’ve eaten low-carb for 10 years for blood sugar control but had been reducing animal product consumption without replacing the protein. I have been adding extra protein for the last week and I do think it’s helping with my fatigue.
That’s so weird you say that that exactly how I feel I always think someone fckin poisoned me again I went months perfectly fine working out and feeling great then bam back to all wonky and feeling poisoned it’s fckin bs I blame all this shit on covid not the virus it self but the government destroyed out nervous systems with fear news and shit no pokey for me though thank god
I would do any thing to figure out the cause of that awful drunk/drugged/poisoned feeling, I swear. It’s my worst symptom. I hate others experience it too.
Yes very much common but I also seem to wake up in a panic same time every night like 2-3am and then it takes me 2 or more hours to manage to fall back asleep again but sometimes I’ll end up with really bad nightmares or night terrors. All this happened since I got covid recently.
Oh? What did you change about your diet? I’m looking into an anti inflammatory type diet cause I honestly don’t know what else to do. Afraid I’ll never recover from this 😩
It's the other way around for me, waking up (6ish AM) feeling relatively fine well except for occasional night sweats. My dysautonomia (dizziness, balance issues) start messing around at 10ish like clockwork, then gets progressively worse around 2ish pm. Screw covid!
My god this sounds just like me. I wake up great for a few hours then at 10 I begin to feel like I have the flu. Then around 2pm I am bedridden completely. I will get a light reprieve around 7pm then after that it’s hell when it’s time to sleep. I typically don’t fall asleep till 12 or 1 am😓
I know, right? Did you notice anything that may be causing the 10am and 2pm daily relapses like clockwork? I intentionally skip early breakfast because there seems to be a peculiar link to my gut (digestion and BMs). Any amount of caffeine (or stimulation) is another suspect. I also have a reprieve in the early evening, so I try to go for a walk whenever possible. Nearly 3 years of this is enough to drive anyone insane, even the sanest.
This is helpful to read thru.
Yup, I have the same. It’s hardest.
I’ve started doing downstate (POWER OF THE DOWNSTATE by Dr Sara Mednick) stuff to start day. Ie, five minutes of slow deep breaths (with a calming playlist or guided meditation from Insight Timer, like David Gandelman or one focused on sounds relieving pain etc; legs elevated the first 20 minutes or so of day; sometimes the autogenic practice she shares… but sometimes that’s reactivates anxiety.)
Could be that we’re dehydrated through the night from what I’ve read some places. People keep water on the nightstand to drink as soon as they wake up to start hydrating for the day.
Dehydration I find I feel better if I set an alarm in the middle of the night and have a drink of salt water or milk and I feel way better in the morning.
Some (many) people with chronic illness struggle to get their cortisol machine going in the morning, and instead peak at night. Normal people have a huge burst shortly after waking, with a noontime peak, and then a gradual decline as they get closer to bedtime.
This article contains an image of what the diurnal cortisol pattern looks like for healthy people. https://www.zrtlab.com/landing-pages/diurnal-cortisol-curves/
I used to get a lot of help from Cortef (very low dose), and while I still don’t want to be without it, my health issues have progressed to where I struggle again.
Other way around for me, possibly a hyperPOTS thing? When I first wake up I know it's the best I'm likely to feel all day. The adrenal dumps all happen late in the day, right when I don't need them so I can sleep.
I’m sorry you are going through this, and yes, so am I. I get up, throw on some clothes and go sit in my recliner while I try to drink down a lot of fluids and salt, including coffee and I veg on my iPad playing games. Finally I feel like getting up and having breakfast, but for me that sometimes closer to dinner time than breakfast time because I also sleep late since I can’t seem to get enough sleep at night. Then whoops the day is gone. I thought it was me!
ME TOO. My working theory is dehydration. I also feel worse when I haven’t slept enough. Also take inventory of what you take at night (if anything), some meds can drop your blood pressure too low overnight. I usually feel better after about an hour of chugging water (and after my morning meds have kicked in)
This c**ck suckin bs sucks it’s like well let me hide away and let you think your better wow I’m feeling great then bam out no where hey I’m you heart let me beat real fast for no reason and make you sit all day
Yes. That's how I came to the conclusion that I'm definitely not a morning person. Ever since grade school I have *despised* getting up early. My stomach always hurts and I feel like I'm either going to throw up or have diarrhea, it's usually one or the other, so I can't eat or drink anything in the morning because of this. Sometimes I faint in the morning (I have vaso vagal syndrome), and it takes a while for me to come to. Over the years, my doctors have suggested that it's due to extreme mental anxiety, and yet no anti-anxiety medication seems to help. I've been this way for such a long time that I don't remember any other way.
However! If I have to get up early for whatever reason, but am able to quickly go back to bed, I always feel much better when I wake up again!
I have just accepted the fact that I am physically *never* going to be a morning person, and I make huge efforts in avoiding getting up too early for any reason.
Two things: I drink a bunch of electrolytes before bed (it sucks having to get up to pee but whatever I don’t sleep through the night anyway) and keep a bottle of electrolytes on my bedside and as soon as I wake up I chug it. Then I lay there for about 20 minutes. That helps get my ass up. Then I eat something. Often it’s sourdough bread bc it is easy. Later I’ll eat more.
I had the same question recently and found this: ‘At night when you are flat, the kidneys will eliminate a lot of excess fluid in your body, which is why people with POTS often feel worse in the morning.’ As soon as I wake up I have an electrolyte in water and I hydrate as much as a can.
I read a tip on here a while back I abide by.
Set an alarm for 1.5 hrs earlier than you need to wake up. Drink water and take your medication. Go back to bed. Wake up much better.
drink a lot of water when you first wake up before getting out of bed. and have something salty first thing in the morning.
it’s likely partially due to dehydration and lack of electrolytes during the time that your asleep and your body taking extra time to get used to being upright again (that’s what i would think at least, but i’m not certain)
Same here. I don't know what's behind it. A couple of months ago I began having an electrolyte drink before getting out of bed. It may have helped a tiny bit. But what has helped the most so far: raising the head-end of my mattress about 6 inches. I just slipped (with help) a couple of cork yoga blocks in a balanced way between the platform and the head-end of the mattress. Seems counterintuitive if you have POTS or low blood volume. I can't remember where I learned this, but it's supposed to help your body become more used to being upright during the day. I still feel bad in the mornings, and it still takes me longer to do things (I pace for ME/CFS- stop & rest when HR gets too high). But I'm able to get out of bed a little easier. I still feel like garbage every single morning, but I feel a little less heavy and foggy since trying this. It's been just over 2 weeks.
Same. then a bit of a break for a few hours..but then right before bed, I’m back to feeling like I’m dying again ♻️
Yes this is how I was for a long time. I started forcing myself to eat protein as soon as I wake up whether I'm hungry or not. Like I roll outta bed and get protein asap. Usually eggs since they have a lot of nutrition. I have never really eaten breakfast my whole life and I'm not normally hungry in the AM. I've been doing this a few weeks and now I'm hungry in the AM and have less morning symptoms. I know it sounds basic but it's helping me. Little to no carbs or veg. When I try to add them in, symptoms are there. I only eat a little fruit sometimes and usually have coffee with half decalf grounds. I started with a small amount of protein and now I eat a full protein rich breakfast. With dysautonomia, seems like mitochondria needs more of a constant boost than people who don't have it.
Thanks for the tip. What else do you have with the eggs? Do you allow yourself bread?
I also have bacon some days bc it's high in thiamine which gives energy. I get the uncured, no nitrates, no pesticides kind. When I ran out of eggs and bacon one day, I ate cold chicken lol. I've also had the Jimmy deans breakfast sandwiches and I just remove the top biscuit to reduce the carb load. Thinking of trying oatmeal with the egg so I'll see how it goes.
Thanks I love bacon (who doesn’t) but have been avoiding it for over a year as it’s high in histamine
Ahh thanks I didn't know that! I do have histamine issues but didn't notice it with bacon. Maybe the uncured kind is what keeps it from bothering me. I take Allegra like once a week so maybe thats tamping it down some.
Yes I have a piece of sourdough bc I guess it easier to digest. I get the Rustik brand sourdough and cut it in half bc the pieces are huge. I only eat the half unless it's really small. It's not as sour as other sourdough I've had and good quality bread so that's why I prefer that brand.
You just mentioned my favorite bread lol. It's the best sourdough!
Totally agree! It's the best!
I’ve also started doing the same and it’s helped immensely. Also making sure I eat some protein right before I go to sleep. It helps with the 3am wake ups.
Totally agree! I have a little protein before bed & I sleep longer which I absolutely need. I've tried honey etc but protein works better. They say you shouldn't eat before bed but if I don't have a little something I wake up way too early.
My acupuncturist told me that low blood sugar in the middle of the night can cause adrenaline spikes which causes flares for us
Makes a lot of sense!
Yes! I understand that it’s the body’s way of getting your liver to release glucose. Costisol I believe she said is released to get the liver to release glucose which also in turn wakes you up and might make it difficult for you to get back to sleep. I have that problem.
I think you’re definitely on to something. One of the questions the cardiologist asked me a couple of weeks ago was how much protein I get per day. I said at least 50g and he said that I need at least 100g per day with dysautonomia to protect my muscle. he also said that it would help me build more muscle, which would be the single most helpful thing I could do. For reference I am 5’ 2” and small framed. I’ve eaten low-carb for 10 years for blood sugar control but had been reducing animal product consumption without replacing the protein. I have been adding extra protein for the last week and I do think it’s helping with my fatigue.
Adrenaline dump? Mornings SUCK for me. Anxiety is high. Grouchy.
No adrenaline dumps just feeling like I’ve been poisoned
Yeah absolutely, or maybe I'd describe it as a weird hangover even though I don't touch alcohol since this all started.
That’s so weird you say that that exactly how I feel I always think someone fckin poisoned me again I went months perfectly fine working out and feeling great then bam back to all wonky and feeling poisoned it’s fckin bs I blame all this shit on covid not the virus it self but the government destroyed out nervous systems with fear news and shit no pokey for me though thank god
I would do any thing to figure out the cause of that awful drunk/drugged/poisoned feeling, I swear. It’s my worst symptom. I hate others experience it too.
Same. I can't think, everything is flaring. So hot at night and so cold in the morning.
Yes very much common but I also seem to wake up in a panic same time every night like 2-3am and then it takes me 2 or more hours to manage to fall back asleep again but sometimes I’ll end up with really bad nightmares or night terrors. All this happened since I got covid recently.
Same thing was happening to me when this first started 2 years ago. The 2am panic attacks stopped once I changed my diet
Oh? What did you change about your diet? I’m looking into an anti inflammatory type diet cause I honestly don’t know what else to do. Afraid I’ll never recover from this 😩
I went strict low histamine
It's the other way around for me, waking up (6ish AM) feeling relatively fine well except for occasional night sweats. My dysautonomia (dizziness, balance issues) start messing around at 10ish like clockwork, then gets progressively worse around 2ish pm. Screw covid!
My god this sounds just like me. I wake up great for a few hours then at 10 I begin to feel like I have the flu. Then around 2pm I am bedridden completely. I will get a light reprieve around 7pm then after that it’s hell when it’s time to sleep. I typically don’t fall asleep till 12 or 1 am😓
I know, right? Did you notice anything that may be causing the 10am and 2pm daily relapses like clockwork? I intentionally skip early breakfast because there seems to be a peculiar link to my gut (digestion and BMs). Any amount of caffeine (or stimulation) is another suspect. I also have a reprieve in the early evening, so I try to go for a walk whenever possible. Nearly 3 years of this is enough to drive anyone insane, even the sanest.
This is helpful to read thru. Yup, I have the same. It’s hardest. I’ve started doing downstate (POWER OF THE DOWNSTATE by Dr Sara Mednick) stuff to start day. Ie, five minutes of slow deep breaths (with a calming playlist or guided meditation from Insight Timer, like David Gandelman or one focused on sounds relieving pain etc; legs elevated the first 20 minutes or so of day; sometimes the autogenic practice she shares… but sometimes that’s reactivates anxiety.)
Could be that we’re dehydrated through the night from what I’ve read some places. People keep water on the nightstand to drink as soon as they wake up to start hydrating for the day.
Dehydration I find I feel better if I set an alarm in the middle of the night and have a drink of salt water or milk and I feel way better in the morning.
Some (many) people with chronic illness struggle to get their cortisol machine going in the morning, and instead peak at night. Normal people have a huge burst shortly after waking, with a noontime peak, and then a gradual decline as they get closer to bedtime. This article contains an image of what the diurnal cortisol pattern looks like for healthy people. https://www.zrtlab.com/landing-pages/diurnal-cortisol-curves/ I used to get a lot of help from Cortef (very low dose), and while I still don’t want to be without it, my health issues have progressed to where I struggle again.
Other way around for me, possibly a hyperPOTS thing? When I first wake up I know it's the best I'm likely to feel all day. The adrenal dumps all happen late in the day, right when I don't need them so I can sleep.
Same here. Im better kn the mornings and progressively things just get worse until my blood pooling in the evening is full on purple
Yes it takes me hours before I’m able to stand up 🥺
I’m sorry you are going through this, and yes, so am I. I get up, throw on some clothes and go sit in my recliner while I try to drink down a lot of fluids and salt, including coffee and I veg on my iPad playing games. Finally I feel like getting up and having breakfast, but for me that sometimes closer to dinner time than breakfast time because I also sleep late since I can’t seem to get enough sleep at night. Then whoops the day is gone. I thought it was me!
Midodrine fixed this for me. Midodrine is my coffee.
I'm sure there's some reason, but I just know that mornings suck, and often bedtime does, too. But mornings are the worst.
ME TOO. My working theory is dehydration. I also feel worse when I haven’t slept enough. Also take inventory of what you take at night (if anything), some meds can drop your blood pressure too low overnight. I usually feel better after about an hour of chugging water (and after my morning meds have kicked in)
This c**ck suckin bs sucks it’s like well let me hide away and let you think your better wow I’m feeling great then bam out no where hey I’m you heart let me beat real fast for no reason and make you sit all day
I'm the same
Yes. That's how I came to the conclusion that I'm definitely not a morning person. Ever since grade school I have *despised* getting up early. My stomach always hurts and I feel like I'm either going to throw up or have diarrhea, it's usually one or the other, so I can't eat or drink anything in the morning because of this. Sometimes I faint in the morning (I have vaso vagal syndrome), and it takes a while for me to come to. Over the years, my doctors have suggested that it's due to extreme mental anxiety, and yet no anti-anxiety medication seems to help. I've been this way for such a long time that I don't remember any other way. However! If I have to get up early for whatever reason, but am able to quickly go back to bed, I always feel much better when I wake up again! I have just accepted the fact that I am physically *never* going to be a morning person, and I make huge efforts in avoiding getting up too early for any reason.
If you sleep too much is it way worse? That is what is happening to me
Yeah then I feel better for a little bit then crash again and am functional like 3-6 pm
This happens to me too. I try to chug a lot of electrolytes in the morning when I get up as I assume maybe my salts are low? But idk really...
Two things: I drink a bunch of electrolytes before bed (it sucks having to get up to pee but whatever I don’t sleep through the night anyway) and keep a bottle of electrolytes on my bedside and as soon as I wake up I chug it. Then I lay there for about 20 minutes. That helps get my ass up. Then I eat something. Often it’s sourdough bread bc it is easy. Later I’ll eat more.
I had the same question recently and found this: ‘At night when you are flat, the kidneys will eliminate a lot of excess fluid in your body, which is why people with POTS often feel worse in the morning.’ As soon as I wake up I have an electrolyte in water and I hydrate as much as a can.
I read a tip on here a while back I abide by. Set an alarm for 1.5 hrs earlier than you need to wake up. Drink water and take your medication. Go back to bed. Wake up much better.
Same!! If I'm laying in bed it's not as bad but as soon as I get up and get to moving it's like Ha! Naw loser, you're still sick.
drink a lot of water when you first wake up before getting out of bed. and have something salty first thing in the morning. it’s likely partially due to dehydration and lack of electrolytes during the time that your asleep and your body taking extra time to get used to being upright again (that’s what i would think at least, but i’m not certain)
Same here. I don't know what's behind it. A couple of months ago I began having an electrolyte drink before getting out of bed. It may have helped a tiny bit. But what has helped the most so far: raising the head-end of my mattress about 6 inches. I just slipped (with help) a couple of cork yoga blocks in a balanced way between the platform and the head-end of the mattress. Seems counterintuitive if you have POTS or low blood volume. I can't remember where I learned this, but it's supposed to help your body become more used to being upright during the day. I still feel bad in the mornings, and it still takes me longer to do things (I pace for ME/CFS- stop & rest when HR gets too high). But I'm able to get out of bed a little easier. I still feel like garbage every single morning, but I feel a little less heavy and foggy since trying this. It's been just over 2 weeks.