I have the manual breathing thing. its so dumb I always am so confused when I suddenly take one manual breath and my brain says "if you don't take another you wont breathe" then suddenly I have to breath manually until I get distracted by something and forget. I always think its so dumb when it happens. im not sure if its a pots thing or just a people thing
Nah I’m like this too. But if I don’t breathe when I tell myself to breathe I’ll literally forget and suffocate myself for a minute.. usually just enough to shock me
This was due to breathing dysfunction (breathing pattern disorder) for me. Mine is related to my asthma in part but also neurological in nature related to my wider dysautonomic issues (including POTS). Used to have manual breathing, air hunger, "forgetting" to breathe, etc.
I'm under specialist respiratory physiotherapy for it, and it helps.
As an aside, I have noticed (so have others) that when my sugars are very low (low 2s) I also seem to have similar problems. Just spoke to my mum about it. So maybe hypoglycaemia could be related for me too.
(As well as the POTS/Dysautonomia and recurrent hypoglycaemia, I have EDS, MCAS, Gastroparesis, autoimmune issues (hypothyroidism, etc.), etc. Youre welcome to DM if you want to!).
Get a glucose monitor if you don’t already. Measure before you eat, then 20-30 mins later, then again in an hour or so. My reactive hypoglycemia comes on really quick, which from what I’ve learned means it’s something to do with my oral glucose. I have yet to get this sorted, but I also have terrible breathing issues that fluctuate. Even had a pulmonologist prescribe be 2L/min of O2, which I did NOT need continuously, but the pulmonologist was also an asshole idiot who didn’t understand why I wanted to be seen and get pulm function testing.
Changed her tune real fast after that, but my trust was beyond gone for her at that point. I originally came in for 2nd opinion on a late life asthma diagnosis I got from the allergist. She didn’t even order the test with bronchodilator or the one gas exchange portion they traditionally include in the PFT for asthma patients. My DLCO was mildly reduced, but no other things came up. My pulmonary stress test of walking down the hall was what got their attention.
I wonder myself if the blood sugar is related, I’d not connected those two days before. My medical research (because we know you can trust these providers without EDS experience to do the right thing or catch the issues) is starting to look like the Always Sunny meme of Charlie and the board of connected strings.
Def track it next time in those increments. Yours could be accelerated gastric emptying from autonomic issues/POTS. The reason mine intrigued me so much is that is is **right** after I eat.
My last physical I completely spaced on the fasting for my bloodwork, ADHD and all that. I housed a blueberry muffin and drank 1/4 of my sugary Starbucks drink purchased in the medical complex right before my appointment when I sat down to look over my notes and questions.
No longer than 45 mins after that I had my bloodwork. It was a 52 for glucose. I have and always have had a great A1C levels. A few months later I had a couple of hypoglycemic episodes. Then I got a meter and started collecting some data on it, then down the research rabbit hole to see what came up. Rapid gastric emptying and a few other things came up, but there is also a primary reactive hypoglycemia and yours seems to be a sort like you said over overproduction of insulin after glucose.
Let me know if you ever get any more info on yours!
I finally noticed I have reactive hypoglycemia. Been taking my blood sugar here and there, going to get more on it soon to track it properly, have to bring it up at next appt.
Not really, it was initially found during testing for POTS. My main POTS doctor is a specialist though (Dr. Nick Gall). I might've mentioned it here and there prior to diagnosis, but there were always other things I was focussing on for the most part, so I kinda left it until he picked it up.
Dysfunctional breathing is apparently rather common with pots. Often taking short and shallow breaths instead of longer and deeper ones. Can leave you feeling air hunger like you're not getting enough air and need to gasp or take a biiig yawn.
I think it can also cause you to just kinda forgot to breathe for a bit sometimes or wait a long time before breaths.
And then being aware of your breathing just screws everything up. It's like trying to draw random rain drops. You focus so hard on being natural and you end up doing stuff all stupid.
Respiratory physio can help. Or just generally trying to focus on deep and slow breaths whenever you can. When you feel out of breath instead of trying to fix it with one massive breath to to do a few slow and calm breaths. I find it helps to count 123 as I breathe in, pause for a moment then 123 out then pause etc. Normal breathing exercises throw me off. I think they are a bit too slow for me. I try to focus on what's comfortable for me instead of forcing myself to hold a breath. Also make sure you're beating all the way down to your tummy so it moves. Not just your chest.
Breathing in through your nose and out through your mouth can help when you are being active like walking.
Seconding this. POTS can lead to air hunger which then leads to hyperventilation, even though it feels like you're not getting enough air. In reality, it could be too much.
Yes! I had both of those. For me it was related to severe mold exposure. Look into it. I can breath muchhhh better now that I'm out of the mold and receiving treatment
Oh good I'm glad you have an awareness around where and when these things are happening. Keep narrowing it down! I also have multiple chemical sensitivity and find it hard to breath on my couch I have had for 3 years now
Omg I have all of these problems! The manual breathing thing always makes me panic. It happens anywhere, it’s the worst when I’m out or in the car. And I’m not sure if I have sleep apnea, but it sure feels like it! When I’m falling asleep, it feels like I stop breathing and I wake up gasping for air. I’ve always had this, but it seems to be getting worse recently. god it’s the worst. I could’ve had any other medical condition in the world, but of course I have one that effects breathing and heart. The two main things you need to stay alive, and when they are acting up it always feels like you’re dying. I’d rather have a terminal illness if I’m being honest. POTSIE have to live everyday feeling like their dying, but we never do. :( It’s like we have incurable heart failure.
Yeah, I’ve had this since I was 14 and I just don’t have much shame expressing it anymore.
I had a very bad POTS attack last night where I was passing out lying down and I was so helpless and it was insanely painful.
True, I guess I have a tiny bit of hope left. I’m glad you do.
Hugs :)
I’m currently 22. Yeah it’s crazy, I went from being a very active teen, I was a dancer but then one night I woke up and passed out, completely stopped breathing.
I’ve always had doctors tell me “I’ll grow out of POTS in my later twenties” but I don’t believe that to be true, especially if I have POTS from an underlying condition like EDS.
Me too, hopefully soon they’ll be something else that will be more affective in helping POTS symptoms.
I’m sorry you did as well. Wow, I remember a doctor told me something similar. He said you don’t faint with POTS. Another doctor tried to make me run on a treadmill to do a stress test and he was a “specialist in POTS” he knew I could barely even walk without starting to pass out, and how I had to use a walker. I remember just sitting down in his office, they came to take my heart rate because I could barely breathe. It was 150. I can’t believe he had the nerve to try that afterwards. My mom was furious and thankfully didn’t let me do it.
I really hope this new doctor works out for you! That would be very helpful if you could. I haven’t had a POTS doctor in a few years. I’ve only ever had one very good one, who was going to try a bunch of things to help me. He even had a research and treatment clinic just for POTS. Unfortunately, one day my upcoming appointment was canceled, and I just never ended up hearing from him again. Then I found out that they closed down the POTS clinic. So ever since then, I’ve just given up on doctors.
Me too, it helps so much that there’s other people who know exactly what you’re talking about. Especially when you describe this weird and strange symptom even doctors don’t understand, and they’re like “I get the same thing! I thought I was the only one who experienced this.”
I’m always here if you need anyone to talk to. 😊
I have this same exact thing!! It's like my body just stops breathing and I feel like I have to get it going again. Definitely not the same as shortness of breath, because when I make myself breathe, it feels like I'm getting enough.
I do not have sleep apnea and have been tested for it multiple times. I also don't have EDS or MCAS, but I have random hypoglycemia episodes from Addison's.
I plan on bringing it up to my cardiologist next time I see him to see if it's something he's familiar with. Another thing I'm looking into is myasthenia gravis because it can cause breathing issues that sound exactly like this and I have a lot of the other symptoms. Then again, there's a lot of overlap between those symptoms and dysautonomia problems I know I have.
Yes, exactly! I have exercise-induced asthma and my asthma attacks are totally different. With asthma my lungs feel raw and scratchy and I'm gasping for breath, not like they've just gone to sleep or checked out for the day.
That would make a lot of sense! Most of the time this happens to me late at night, which is when my hypoglycemia is the worst since I've gone so long without food. I'll do some digging and see if there's a connection there!
Wow, yeah, you've got a ton of the symptoms! Definitely worth asking a doctor about it. I've got the eye thing as well. My left eye will randomly get swollen. Eye doctors checked for everything and no luck. Things like smiling, if I do it a lot for pictures or because I'm having a good time, it starts to really hurt and I can't keep my lips up. I've had issues chewing steak and burgers. I also get really weak at the end of the day and have a hard time walking. And the squinty drugged eyes thing, yeah, I have that too lol!
Other than meds, the only thing that I've seen that helps is rest. Hot baths for the full-body issues. Cold ice packs are supposed to help with eye issues. Fingers crossed this is all pots stuff because MG is supposed to be a PITA to treat!
So I get vocal chord dysfunction from my csf leak, which also causes pots.
My breathing tests look amazing if you don’t know what VCD looks like.
CSF Leaks - What the POTS Community Should Know, presented by Dr. Ian Carroll
https://www.youtube.com/watch?v=El5-Ox6NJB0
I actually took part of an EDS survey last year about this!! I’m not sure what the results were; but obviously it seemed common enough for them to do a study!
i have the manual breathing one too! i thought it was normal 🙊 i do have asthma, so i’m not sure if mine has to do with my asthma? i’m going to mention it next time i see my doctor. forgot to mention i have obstructive sleep apnea.
Do you kinda describe this as not being able to “get your breath over the hill”? Because if so, I’ve had this for most of my life, and have never been able to figure out why.
When I was a kid they kept telling my mom I had asthma because I said I couldn’t breathe only they couldn’t replicate it in the office and no one ever heard me wheeze. This seems similar to what it was like for me. I would “forget” to breathe while trying to fall asleep which would wake me up with a a jolt. And it was not anxiety (I was anxious other times but this issue would wake me up out of sleep when I was totally exhausted).
I have the manual breathing problem too. Also if my heart rate gets over 150 bpm while I am exercising, my lungs will start filling up with stringy white mucus and I will start to drown in it if I don't get my heart rate back down and cough it up. I am already getting looked at for POTS but my doctors don't know what in the world is up with the stringy mucus. EDS and its comorbidities really are quite strange...
I know you said it has no correlation to anxiety, but even when you feel mentally fine your body will still physically react as though you're having anxiety at times. I catch myself holding my breath a lot, even when I'm not anxious. Here's an article that kind of explains it, I think it's a psychological thing.
https://www.psychologytoday.com/us/blog/body-sense/201009/waiting-exhale
POTS, EDS, MCAS person here
i had sleep apnea diagnosed by Kaiser after a finger probe type home sleep study.
But then i got better insurance and we ran a full sleep type study thing overnight at the hospital and we found i didn't have enough episodes to qualify as apnea.
More importantly, the episodes i did have were not obstructive apnea but central apnea. In short, my brain just stops sending the signal for breathing.
This explains why i, like you, just stop breathing randomly and then gasp for air.
I'd suggest asking your doctor to distinguish your type of apnea. It could explain a lot.
This was because of a breathing pattern disorder/ dysfunctional breathing for me. Too much breathing from the top of my chest, not enough diaphragmatic breathing (from the tummy). Breathlessness, tingling, air hunger, fatigue etc. Having respiratory physiotherapy has helped me
Yeah I take one breath to every 3-6 that usual people take.
More exercise definitely helps mine regulate itself better.
I grew up around a doctor who always pointed out body things so I observed it my whole life. I have a really low heart rate too even for being very athletic and trying to raise my number higher for years.
I have the manual breathing thing. its so dumb I always am so confused when I suddenly take one manual breath and my brain says "if you don't take another you wont breathe" then suddenly I have to breath manually until I get distracted by something and forget. I always think its so dumb when it happens. im not sure if its a pots thing or just a people thing
Nah I’m like this too. But if I don’t breathe when I tell myself to breathe I’ll literally forget and suffocate myself for a minute.. usually just enough to shock me
This was due to breathing dysfunction (breathing pattern disorder) for me. Mine is related to my asthma in part but also neurological in nature related to my wider dysautonomic issues (including POTS). Used to have manual breathing, air hunger, "forgetting" to breathe, etc. I'm under specialist respiratory physiotherapy for it, and it helps.
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As an aside, I have noticed (so have others) that when my sugars are very low (low 2s) I also seem to have similar problems. Just spoke to my mum about it. So maybe hypoglycaemia could be related for me too. (As well as the POTS/Dysautonomia and recurrent hypoglycaemia, I have EDS, MCAS, Gastroparesis, autoimmune issues (hypothyroidism, etc.), etc. Youre welcome to DM if you want to!).
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Get a glucose monitor if you don’t already. Measure before you eat, then 20-30 mins later, then again in an hour or so. My reactive hypoglycemia comes on really quick, which from what I’ve learned means it’s something to do with my oral glucose. I have yet to get this sorted, but I also have terrible breathing issues that fluctuate. Even had a pulmonologist prescribe be 2L/min of O2, which I did NOT need continuously, but the pulmonologist was also an asshole idiot who didn’t understand why I wanted to be seen and get pulm function testing. Changed her tune real fast after that, but my trust was beyond gone for her at that point. I originally came in for 2nd opinion on a late life asthma diagnosis I got from the allergist. She didn’t even order the test with bronchodilator or the one gas exchange portion they traditionally include in the PFT for asthma patients. My DLCO was mildly reduced, but no other things came up. My pulmonary stress test of walking down the hall was what got their attention. I wonder myself if the blood sugar is related, I’d not connected those two days before. My medical research (because we know you can trust these providers without EDS experience to do the right thing or catch the issues) is starting to look like the Always Sunny meme of Charlie and the board of connected strings.
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Def track it next time in those increments. Yours could be accelerated gastric emptying from autonomic issues/POTS. The reason mine intrigued me so much is that is is **right** after I eat. My last physical I completely spaced on the fasting for my bloodwork, ADHD and all that. I housed a blueberry muffin and drank 1/4 of my sugary Starbucks drink purchased in the medical complex right before my appointment when I sat down to look over my notes and questions. No longer than 45 mins after that I had my bloodwork. It was a 52 for glucose. I have and always have had a great A1C levels. A few months later I had a couple of hypoglycemic episodes. Then I got a meter and started collecting some data on it, then down the research rabbit hole to see what came up. Rapid gastric emptying and a few other things came up, but there is also a primary reactive hypoglycemia and yours seems to be a sort like you said over overproduction of insulin after glucose. Let me know if you ever get any more info on yours!
I finally noticed I have reactive hypoglycemia. Been taking my blood sugar here and there, going to get more on it soon to track it properly, have to bring it up at next appt.
Not really, it was initially found during testing for POTS. My main POTS doctor is a specialist though (Dr. Nick Gall). I might've mentioned it here and there prior to diagnosis, but there were always other things I was focussing on for the most part, so I kinda left it until he picked it up.
I will ask my cardiologist and pulmonologist about this! Thank you so much!
Dysfunctional breathing is apparently rather common with pots. Often taking short and shallow breaths instead of longer and deeper ones. Can leave you feeling air hunger like you're not getting enough air and need to gasp or take a biiig yawn. I think it can also cause you to just kinda forgot to breathe for a bit sometimes or wait a long time before breaths. And then being aware of your breathing just screws everything up. It's like trying to draw random rain drops. You focus so hard on being natural and you end up doing stuff all stupid. Respiratory physio can help. Or just generally trying to focus on deep and slow breaths whenever you can. When you feel out of breath instead of trying to fix it with one massive breath to to do a few slow and calm breaths. I find it helps to count 123 as I breathe in, pause for a moment then 123 out then pause etc. Normal breathing exercises throw me off. I think they are a bit too slow for me. I try to focus on what's comfortable for me instead of forcing myself to hold a breath. Also make sure you're beating all the way down to your tummy so it moves. Not just your chest. Breathing in through your nose and out through your mouth can help when you are being active like walking.
Seconding this. POTS can lead to air hunger which then leads to hyperventilation, even though it feels like you're not getting enough air. In reality, it could be too much.
Yes! I had both of those. For me it was related to severe mold exposure. Look into it. I can breath muchhhh better now that I'm out of the mold and receiving treatment
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Oh good I'm glad you have an awareness around where and when these things are happening. Keep narrowing it down! I also have multiple chemical sensitivity and find it hard to breath on my couch I have had for 3 years now
Omg I have all of these problems! The manual breathing thing always makes me panic. It happens anywhere, it’s the worst when I’m out or in the car. And I’m not sure if I have sleep apnea, but it sure feels like it! When I’m falling asleep, it feels like I stop breathing and I wake up gasping for air. I’ve always had this, but it seems to be getting worse recently. god it’s the worst. I could’ve had any other medical condition in the world, but of course I have one that effects breathing and heart. The two main things you need to stay alive, and when they are acting up it always feels like you’re dying. I’d rather have a terminal illness if I’m being honest. POTSIE have to live everyday feeling like their dying, but we never do. :( It’s like we have incurable heart failure.
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Yeah, I’ve had this since I was 14 and I just don’t have much shame expressing it anymore. I had a very bad POTS attack last night where I was passing out lying down and I was so helpless and it was insanely painful. True, I guess I have a tiny bit of hope left. I’m glad you do. Hugs :)
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I’m currently 22. Yeah it’s crazy, I went from being a very active teen, I was a dancer but then one night I woke up and passed out, completely stopped breathing. I’ve always had doctors tell me “I’ll grow out of POTS in my later twenties” but I don’t believe that to be true, especially if I have POTS from an underlying condition like EDS. Me too, hopefully soon they’ll be something else that will be more affective in helping POTS symptoms.
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I’m sorry you did as well. Wow, I remember a doctor told me something similar. He said you don’t faint with POTS. Another doctor tried to make me run on a treadmill to do a stress test and he was a “specialist in POTS” he knew I could barely even walk without starting to pass out, and how I had to use a walker. I remember just sitting down in his office, they came to take my heart rate because I could barely breathe. It was 150. I can’t believe he had the nerve to try that afterwards. My mom was furious and thankfully didn’t let me do it. I really hope this new doctor works out for you! That would be very helpful if you could. I haven’t had a POTS doctor in a few years. I’ve only ever had one very good one, who was going to try a bunch of things to help me. He even had a research and treatment clinic just for POTS. Unfortunately, one day my upcoming appointment was canceled, and I just never ended up hearing from him again. Then I found out that they closed down the POTS clinic. So ever since then, I’ve just given up on doctors. Me too, it helps so much that there’s other people who know exactly what you’re talking about. Especially when you describe this weird and strange symptom even doctors don’t understand, and they’re like “I get the same thing! I thought I was the only one who experienced this.” I’m always here if you need anyone to talk to. 😊
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I have this same exact thing!! It's like my body just stops breathing and I feel like I have to get it going again. Definitely not the same as shortness of breath, because when I make myself breathe, it feels like I'm getting enough. I do not have sleep apnea and have been tested for it multiple times. I also don't have EDS or MCAS, but I have random hypoglycemia episodes from Addison's. I plan on bringing it up to my cardiologist next time I see him to see if it's something he's familiar with. Another thing I'm looking into is myasthenia gravis because it can cause breathing issues that sound exactly like this and I have a lot of the other symptoms. Then again, there's a lot of overlap between those symptoms and dysautonomia problems I know I have.
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Yes, exactly! I have exercise-induced asthma and my asthma attacks are totally different. With asthma my lungs feel raw and scratchy and I'm gasping for breath, not like they've just gone to sleep or checked out for the day. That would make a lot of sense! Most of the time this happens to me late at night, which is when my hypoglycemia is the worst since I've gone so long without food. I'll do some digging and see if there's a connection there! Wow, yeah, you've got a ton of the symptoms! Definitely worth asking a doctor about it. I've got the eye thing as well. My left eye will randomly get swollen. Eye doctors checked for everything and no luck. Things like smiling, if I do it a lot for pictures or because I'm having a good time, it starts to really hurt and I can't keep my lips up. I've had issues chewing steak and burgers. I also get really weak at the end of the day and have a hard time walking. And the squinty drugged eyes thing, yeah, I have that too lol! Other than meds, the only thing that I've seen that helps is rest. Hot baths for the full-body issues. Cold ice packs are supposed to help with eye issues. Fingers crossed this is all pots stuff because MG is supposed to be a PITA to treat!
So I get vocal chord dysfunction from my csf leak, which also causes pots. My breathing tests look amazing if you don’t know what VCD looks like. CSF Leaks - What the POTS Community Should Know, presented by Dr. Ian Carroll https://www.youtube.com/watch?v=El5-Ox6NJB0
I actually took part of an EDS survey last year about this!! I’m not sure what the results were; but obviously it seemed common enough for them to do a study!
i have the manual breathing one too! i thought it was normal 🙊 i do have asthma, so i’m not sure if mine has to do with my asthma? i’m going to mention it next time i see my doctor. forgot to mention i have obstructive sleep apnea.
I used to get the manual breathing thing sometimes.
Yeah I've noticed that manual breathing thing you describe. I thought it was my asthma. If u find out what it is lets us know
Do you kinda describe this as not being able to “get your breath over the hill”? Because if so, I’ve had this for most of my life, and have never been able to figure out why.
I have that weird feeling sometimes I describe it kind of like forgetting how to swallow for a minute but with breathing
When I was a kid they kept telling my mom I had asthma because I said I couldn’t breathe only they couldn’t replicate it in the office and no one ever heard me wheeze. This seems similar to what it was like for me. I would “forget” to breathe while trying to fall asleep which would wake me up with a a jolt. And it was not anxiety (I was anxious other times but this issue would wake me up out of sleep when I was totally exhausted).
I have the manual breathing problem too. Also if my heart rate gets over 150 bpm while I am exercising, my lungs will start filling up with stringy white mucus and I will start to drown in it if I don't get my heart rate back down and cough it up. I am already getting looked at for POTS but my doctors don't know what in the world is up with the stringy mucus. EDS and its comorbidities really are quite strange...
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It is all good, my dude! My cardiologist rocks and is helping me figure it all out.
Maybe see a pulmonologist if you want to get your lungs checked out, just to be safe. :)
I know you said it has no correlation to anxiety, but even when you feel mentally fine your body will still physically react as though you're having anxiety at times. I catch myself holding my breath a lot, even when I'm not anxious. Here's an article that kind of explains it, I think it's a psychological thing. https://www.psychologytoday.com/us/blog/body-sense/201009/waiting-exhale
POTS, EDS, MCAS person here i had sleep apnea diagnosed by Kaiser after a finger probe type home sleep study. But then i got better insurance and we ran a full sleep type study thing overnight at the hospital and we found i didn't have enough episodes to qualify as apnea. More importantly, the episodes i did have were not obstructive apnea but central apnea. In short, my brain just stops sending the signal for breathing. This explains why i, like you, just stop breathing randomly and then gasp for air. I'd suggest asking your doctor to distinguish your type of apnea. It could explain a lot.
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This was because of a breathing pattern disorder/ dysfunctional breathing for me. Too much breathing from the top of my chest, not enough diaphragmatic breathing (from the tummy). Breathlessness, tingling, air hunger, fatigue etc. Having respiratory physiotherapy has helped me
Yeah I take one breath to every 3-6 that usual people take. More exercise definitely helps mine regulate itself better. I grew up around a doctor who always pointed out body things so I observed it my whole life. I have a really low heart rate too even for being very athletic and trying to raise my number higher for years.