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andybonse

Constant Airhunger / Shortness of breath

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God, this symptom! I had it VERY bad years ago and it resolved mostly and was so much relief.

Not sure why it resolved, most likely the fludrocortisone which has stopped working and im going up my dose to see how I feel.

However, I have no idea what's causing it apart from it has to be related to blood flow and pots / dysautonomia surely? Maybe it's disrupting the blood Ph / CO2 or something?

Any how, I had before:

Lung CT - normal

Lung Function - Excellent

All heart tests - Perfectly normal heart structure and ejection fraction etc..

Tried asthma inhalers and inhaled steroid.

So now it's returned, I need to really find out and doctors these days aren't very helpful with things they can't "simply" find.

Is there any tests I should be asking my doctor for? The only one I can think of is an Arterial Gasses blood test.

I just need to find an answer as it's like suffocating. It's not anxiety or hyperventilation. It's 100% some physical response.

I've started exercising again to try see if it helps, exercise does not make it worse, it stays the same...which is strange. 

I do find when im doing something upright it makes it worse and laying on my front completely flat relieves it some what and I have to lay there for a while until

it sorts itself out or becomes more tolerable.

It's just umbareable and makes me miserable, when I can get a deep breath it feels like hard work and exhausting.

Blood pressure will be perfect, 118/70 and heart rate 60, so clearly the body isn't under stress, maybe it's a false sensation from low blood volume?

 

Cheers!

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2 hours ago, andybonse said:

God, this symptom! I had it VERY bad years ago and it resolved mostly and was so much relief.

Not sure why it resolved, most likely the fludrocortisone which has stopped working and im going up my dose to see how I feel.

However, I have no idea what's causing it apart from it has to be related to blood flow and pots / dysautonomia surely? Maybe it's disrupting the blood Ph / CO2 or something?

Any how, I had before:

Lung CT - normal

Lung Function - Excellent

All heart tests - Perfectly normal heart structure and ejection fraction etc..

Tried asthma inhalers and inhaled steroid.

So now it's returned, I need to really find out and doctors these days aren't very helpful with things they can't "simply" find.

Is there any tests I should be asking my doctor for? The only one I can think of is an Arterial Gasses blood test.

I just need to find an answer as it's like suffocating. It's not anxiety or hyperventilation. It's 100% some physical response.

I've started exercising again to try see if it helps, exercise does not make it worse, it stays the same...which is strange. 

I do find when im doing something upright it makes it worse and laying on my front completely flat relieves it some what and I have to lay there for a while until

it sorts itself out or becomes more tolerable.

It's just umbareable and makes me miserable, when I can get a deep breath it feels like hard work and exhausting.

Blood pressure will be perfect, 118/70 and heart rate 60, so clearly the body isn't under stress, maybe it's a false sensation from low blood volume?

 

Cheers!

Over 3 years and counting for me. I have had the same tests and everything came back normal. I have even had my artial cases checked (hurt btw) It was my number one symptom. It has slowly gotten better so it is more tolerable. But I have described it like the bottom third of my lungs aren't working.

My specialist is the only one who had an answer and he says it has to do with my POTS. I have been given no reasoning or solutions.

I have noticed the higher my HR gets the worse it is. If my breathing becomes bad my HR is usually above 150. Lately I have been just taking an additional dose of my Beta Blocker and it seems to keep it from getting really bad like it was in the beginning. 

I also avoid the triggers that make it worse. I can usually do only one of the follow; smoke, talk, or walk. If I do more than one I usually get winded and it makes it worse. 

Laying on my left side usually helps a little too. 

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I cycle through this problem quite a bit I seem to get a flare up whenever my body goes through stress I had a tooth abscessed about a 7mo ago and then antibiotics and the breathing thing came back with a vengeance.  For some reason it seems to be related to my gut so I started taking zinc carnosine and it seems to help when nothing else would.

      I think if I eat perfectly no Dairy gluten refined sugar that kind of thing it may prevent the flare up to begin with but once it starts zinc carnosine seems to be helping me quite a bit.

I didn't make the connection that might  My stomach was related to my breathing because when you're in a really bad flare-up when you first wake up in the morning the breathing start and so you don't recognize the triggers  .

  Anyway I'm just trying to let people know   

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3 minutes ago, AnewDay said:

I cycle through this problem quite a bit I seem to get a flare up whenever my body goes through stress I had a tooth abscessed about a 7mo ago and then antibiotics and the breathing thing came back with a vengeance.  For some reason it seems to be related to my gut so I started taking zinc carnosine and it seems to help when nothing else would.

      I think if I eat perfectly no Dairy gluten refined sugar that kind of thing it may prevent the flare up to begin with but once it starts zinc carnosine seems to be helping me quite a bit.

I didn't make the connection that might  My stomach was related to my breathing because when you're in a really bad flare-up when you first wake up in the morning the breathing start and so you don't recognize the triggers  .

  Anyway I'm just trying to let people know   

I have stomach issues too that started with H Pylori. I even went on a second round of antibiotics a month later and nothing has changed. I have to wonder if it dings the immune response which cascades into other problems. There's so much we don't know. 

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3 hours ago, AnewDay said:

I cycle through this problem quite a bit I seem to get a flare up whenever my body goes through stress I had a tooth abscessed about a 7mo ago and then antibiotics and the breathing thing came back with a vengeance.  For some reason it seems to be related to my gut so I started taking zinc carnosine and it seems to help when nothing else would.

      I think if I eat perfectly no Dairy gluten refined sugar that kind of thing it may prevent the flare up to begin with but once it starts zinc carnosine seems to be helping me quite a bit.

I didn't make the connection that might  My stomach was related to my breathing because when you're in a really bad flare-up when you first wake up in the morning the breathing start and so you don't recognize the triggers  .

  Anyway I'm just trying to let people know   

I noticed in the beginning anything that would make my stomach bloat would make the breathing worse. But honestly even with diet changes it hasn't gone away totally. It just varies in intensity for me. I did notice the Rolaids with gas relief would help if it was really bad. But that only helps enough to avoid the ER. 

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20 minutes ago, StayAtHomeMom said:

I noticed in the beginning anything that would make my stomach bloat would make the breathing worse. But honestly even with diet changes it hasn't gone away totally. It just varies in intensity for me. I did notice the Rolaids with gas relief would help if it was really bad. But that only helps enough to avoid the ER. 

What is the bloat from? I get it too. 

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Bloating can cause shortness of breath by confining the diaphragm and therefore making it hard to take a deep breath. I get short of breath when my POTS gets worse and I was told that this is part of the body trying to raise the O2 levels - I also yawn a lot when this happens ( another attempt by the body to raise oxygenation ). 

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11 hours ago, JimL said:

What is the bloat from? I get it too. 

Bread, pasta, and heavy foods. I went keto (to lose some weight) and I noticed the bloating has mostly stopped. Not sure 100% it is from the diet change. But since October I haven't had any heartburn, and the bloating has stopped. My bowel movements have dramatically improved. When I am finished losing the weight I intend to stay low carb in the hopes that my GI problems will stay away. BTW I don't have celiac, I was already tested for that. 

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23 hours ago, Outaker said:

Low blood volume I have exactly the same condition that resolves then comes back.. :( Please let me know if you find a solution..

Have you tried fludrocortisone? That boosts blood volume.

Also as much exercise as you can, it increases blood volume, heart size and strength, capillaries in the lungs, red blood cell size which all is fantastic for us.

That is what I'm trying currently. I am sat here now, fine in my head but have that feeling of shortness of breath and need to keep yawning or trying to get a deep breath its uncomfortable but im trying. 

Funny thing I find is, when I am light headed I dont have shortness of breath but when I am great in my head I am short of breath?!!? Maybe it's vasoconstriction pushing blood up but restricting it else where or something, quite a few possibilities!

22 hours ago, StayAtHomeMom said:

Over 3 years and counting for me. I have had the same tests and everything came back normal. I have even had my artial cases checked (hurt btw) It was my number one symptom. It has slowly gotten better so it is more tolerable. But I have described it like the bottom third of my lungs aren't working.

My specialist is the only one who had an answer and he says it has to do with my POTS. I have been given no reasoning or solutions.

I have noticed the higher my HR gets the worse it is. If my breathing becomes bad my HR is usually above 150. Lately I have been just taking an additional dose of my Beta Blocker and it seems to keep it from getting really bad like it was in the beginning. 

I also avoid the triggers that make it worse. I can usually do only one of the follow; smoke, talk, or walk. If I do more than one I usually get winded and it makes it worse. 

Laying on my left side usually helps a little too. 

Yeah my number on symptom too! I find laying on my right side helps, or laying completely flat including my head on my front. Lol. Clearly blood flow related. Maybe just when upright the brain is telling us we need more oxygen, like we don't need it to function as im sitting here quite alright in my head actually just this urge to keep getting a deep breath and uncomfortable feeling in my head!

I know I'm not deprived of oxygen as I can exercise on my bike and get my hr to 160 and not be that out of puff. Logic huh. lol.

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7 hours ago, StayAtHomeMom said:

Bread, pasta, and heavy foods. I went keto (to lose some weight) and I noticed the bloating has mostly stopped. Not sure 100% it is from the diet change. But since October I haven't had any heartburn, and the bloating has stopped. My bowel movements have dramatically improved. When I am finished losing the weight I intend to stay low carb in the hopes that my GI problems will stay away. BTW I don't have celiac, I was already tested for that. 

I tried going back to keto again. I did it for 16 months and because of the GI symptoms I was having, decided to stop and see if it helped. A couple months later POTS started. My GI tract tends to be slower with keto though, unless I get the fiber up. The other thing is my pulse rate doesn't seem as bad on keto. I just can't believe POTS is responsible for all the symptoms I am having. It's like a bad dream.  

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24 minutes ago, JimL said:

I tried going back to keto again. I did it for 16 months and because of the GI symptoms I was having, decided to stop and see if it helped. A couple months later POTS started. My GI tract tends to be slower with keto though, unless I get the fiber up. The other thing is my pulse rate doesn't seem as bad on keto. I just can't believe POTS is responsible for all the symptoms I am having. It's like a bad dream.  

Yea, a bad dream is a good description. Unfortunately it is not. My oldest son has been showing signs and symptoms as long as me, finally got him into see my specialist and it looks like he has a good chance of having it too. He has testing next week. It feels kind of surreal. Had never heard of POTS and for the last few years it is always on my mind. Worrying what is going to cause symptoms to get worse so I can avoid it. 

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2 hours ago, andybonse said:

Have you tried fludrocortisone? That boosts blood volume.

Also as much exercise as you can, it increases blood volume, heart size and strength, capillaries in the lungs, red blood cell size which all is fantastic for us.

That is what I'm trying currently. I am sat here now, fine in my head but have that feeling of shortness of breath and need to keep yawning or trying to get a deep breath its uncomfortable but im trying. 

Funny thing I find is, when I am light headed I dont have shortness of breath but when I am great in my head I am short of breath?!!? Maybe it's vasoconstriction pushing blood up but restricting it else where or something, quite a few possibilities!

Yeah my number on symptom too! I find laying on my right side helps, or laying completely flat including my head on my front. Lol. Clearly blood flow related. Maybe just when upright the brain is telling us we need more oxygen, like we don't need it to function as im sitting here quite alright in my head actually just this urge to keep getting a deep breath and uncomfortable feeling in my head!

I know I'm not deprived of oxygen as I can exercise on my bike and get my hr to 160 and not be that out of puff. Logic huh. lol.

That is an interesting theory. Like the brain needs some oxygen, so it tells the whole body it needs it. Lowest my O2 has ever been was 96. I have even hit 100 (nurse was a little surprised because most people don't). If I walk any distance, especially quickly, my breathing issue spikes though.

I went for a short run when this all started. Not sure how it triggered it. But immediately couldn't breathe right. Spent two weeks fighting with it hoping I would wake up one day and it would be gone. From there it spiraled out of control with all of my other symptoms. That was 4 years ago this coming June. 

I have suspected I have had POTS since I was younger but I can't prove it. And a lot of things that I figured was normal or because I smoked (started young), I am beginning to think that may have been signs and symptoms of mild POTS. Especially considering my oldest son. My youngest son has some symptoms but no signs yet. He turned 13 today. All I can do is watch and wait for him. And hopefully with my oldest son having a diagnosis we can get to the underlying cause. 

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58 minutes ago, StayAtHomeMom said:

Yea, a bad dream is a good description. Unfortunately it is not. My oldest son has been showing signs and symptoms as long as me, finally got him into see my specialist and it looks like he has a good chance of having it too. He has testing next week. It feels kind of surreal. Had never heard of POTS and for the last few years it is always on my mind. Worrying what is going to cause symptoms to get worse so I can avoid it. 

I have to wonder if there is some virus or bacteria that causes this. 

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16 hours ago, JimL said:

I have to wonder if there is some virus or bacteria that causes this. 

Certain viruses have been linked as triggers. But we have never had any of them. I suspect hEDS because of the flexibility that I have, compared to my husband, that I have seemed to have passed on to my boys. But hEDS is not a perfect fit because I have never had official dislocations or surgeries to correct things. Autoimmune feels like a better fit, but my testing keeps coming back negative. I know I need to see a rheumatologist to rule things out, but I hate seeing a new doctor that is going to look at me like I am crazy. So I have been taking a break for a little while. 

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4 hours ago, StayAtHomeMom said:

Certain viruses have been linked as triggers. But we have never had any of them. I suspect hEDS because of the flexibility that I have, compared to my husband, that I have seemed to have passed on to my boys. But hEDS is not a perfect fit because I have never had official dislocations or surgeries to correct things. Autoimmune feels like a better fit, but my testing keeps coming back negative. I know I need to see a rheumatologist to rule things out, but I hate seeing a new doctor that is going to look at me like I am crazy. So I have been taking a break for a little while. 

true, but viruses and bacteria can cause autoimmune responses and I guess that's what I meant. I don't have EDS although my cardiologists was curious about Marfans. While I am tall, I don't have those traits. I think I ate something bad, got H Pylori that wasn't treated right and it triggered a lot of the stuff I have now. On top of it, I've had spine surgery and removal of a lapband in the last 5 months. I am prone to bone spurs and stenosis of vertibrae. 

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The breathlessness is so scary. I'm fine lying down. Once I stand it starts. I've not had ad many dizzy episodes but have been diagnosed with diverticulitis and orthostatic hypertension. The fatigue and physical weakness is off the charts. I've come to dread mornings. I can feel the anxiety build before I even sit up. Last ER visit I complained of being short of breath but my O2 SATs were fine. My stamina is tanking. The only time I feel good is when I'm lying down. Especially on my left side. I also have mid and RUQ pressure, the old site of surgery to lyse adhesions that caused a closed loop obstruction. Some days I feel like I'm on borrowed time. I just want to be able to breathe and have energy.

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Oh wow, I’m glad checked in here today! I don’t know what form of dysautonomia I have yet since I’m still in the testing stages. I have been having really bad problems with breathlessness as well! Mine start when I get up from sitting. I first get very dizzy, then I’m totally out of breath when I start walking of and my legs turn to jello and my heart rate jumps up to 110 bpm or more! All I can do is either barrel through it or collapse into the next available chair. When I’m at the grocery store I take it slow, yet I get the same symptoms. By the time I get back to my car my upper lip is feeling weird. I’m finally seeing a cardiologist on the 13th. My husband can’t believe that not one of my many doctors has ever sent me to a cardiologist considering that I have very low blood pressure and high heart rate!

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2 hours ago, Tharrell said:

Oh wow, I’m glad checked in here today! I don’t know what form of dysautonomia I have yet since I’m still in the testing stages. I have been having really bad problems with breathlessness as well! Mine start when I get up from sitting. I first get very dizzy, then I’m totally out of breath when I start walking of and my legs turn to jello and my heart rate jumps up to 110 bpm or more! All I can do is either barrel through it or collapse into the next available chair. When I’m at the grocery store I take it slow, yet I get the same symptoms. By the time I get back to my car my upper lip is feeling weird. I’m finally seeing a cardiologist on the 13th. My husband can’t believe that not one of my many doctors has ever sent me to a cardiologist considering that I have very low blood pressure and high heart rate!

Because breathing is my most severe symptom and the doctors didn't want a list, they kept sending me to a pulmonologist. I had to request the cardiologist. Then again they said my HR and BP were normal too. 

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I've been following this thread because I'm kind of crashing right and this symptom has come back with a vengeance. When this happens to me I can be gasping for breath for a long time. I try to breath deeply but it's often like I've been running or some other type of over-exertion. One thing I'm not sure has been mentioned is when you breath like this like say in panic attacks, it's hyperventilation and you can't do it very long or you'll pass out. That's why they try to put a bag over your face.  When I do it, it's like I really need the oxygen. Do others feel like this? I've checked my SpO2 during these episodes and it's usually normal although it can be low at other times when I don't feel like this. 

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19 hours ago, toomanyproblems said:

I've been following this thread because I'm kind of crashing right and this symptom has come back with a vengeance. When this happens to me I can be gasping for breath for a long time. I try to breath deeply but it's often like I've been running or some other type of over-exertion. One thing I'm not sure has been mentioned is when you breath like this like say in panic attacks, it's hyperventilation and you can't do it very long or you'll pass out. That's why they try to put a bag over your face.  When I do it, it's like I really need the oxygen. Do others feel like this? I've checked my SpO2 during these episodes and it's usually normal although it can be low at other times when I don't feel like this. 

Yes, and when it used to be bad my nose would go numb. I also had one instance where my body curled in on itself. Went to the ER and realized I was panicking. When I settled myself down my body relaxed. Was very scary. I have learned to relax since then. I know it feels like I can't breathe, but the doctors said I was ok and if I don't fight the breathing issue it doesn't get worse. Sometimes I just have to sleep through the worst of it. 

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I've upped my fludrocortisone and now I feel a lot better, so far anyways. Only time will tell.

I really bet it's a lot to do with blood volume / pressure. I would love to have the testing facilities to see blood flow in every region of the body when these symptoms are happening, it would make so many questions answered. But unfortunately, it's money and hospitals won't do it. When I win the lottery I will fund my own private research and find a cure! lol.

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4 hours ago, andybonse said:

I've upped my fludrocortisone and now I feel a lot better, so far anyways. Only time will tell.

I really bet it's a lot to do with blood volume / pressure. I would love to have the testing facilities to see blood flow in every region of the body when these symptoms are happening, it would make so many questions answered. But unfortunately, it's money and hospitals won't do it. When I win the lottery I will fund my own private research and find a cure! lol.

That sounds like an awesome idea :D

I have always wondered what they could do to test and prove low blood volume. But the only thing I could find was a CBC that used the red blood count to guesstimate. And I am certain most people RBC wasn't wonky. That would have been flagged right away. 

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