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hi, I could be totally alone in this, but does anyone else feel like you’re not getting enough air? I get out of breath doing almost anything but even when I am just sitting here, I feel like I just can’t get a good enough breath of air. I often sigh a lot (& loudly, almost like a panicked sigh) but it’s involuntary. I noticed on my discharge paperwork from the hospital a couple months ago, my breaths per min were 16 when I was triaged & upon discharge it was only 10. The breathlessness is way worse when I have palpitations because they take my breath away & I cough involuntarily, it feels like a way to restart my heart or something. I dunno. I could be totally crazy. Even when I yawn, I feel like it’s not a good yawn. 

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Do you have a history of asthma in your family? Your symptoms sound similar to some Hubs describes, he is an asthmatic.

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@WinterSown my brother had severe asthma as a kid, thank goodness it’s gotten better as he’s gotten older. My dad doesn’t have asthma but when he gets colds, it goes right to his lungs. My papa (my dads dad) said my dad was in an incubator for a bit because his lungs weren’t fully developed. 

I don’t wheeze or anything. No mucus. The cough is def associated with the palpitations -which knock on wood, haven’t been as bad lately. It’s just a really strange feeling. I wish I could describe it better. 

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Breathing, something we take for granted until it's difficult... I can relate to a lot of what you are saying and it happens to me when i get pre-syncope. When I do pass out sometimes I regain consciousness and feel like I'm suffocating, then follows some coughing, panting, and lots of yawning. Some actions, like yawning force you to breathe deeper and so can be beneficial in some situations. 

I have a blood clot in my lung right now and require supplementary O2 to keep my sats up. Even though it's small its caused fluid accumulation, collapse of the lower parts of my lungs, and straining my heart which is now enlarged. With all that I've just experienced I have a new found admiration for people with difficulty breathing. Feeling like you can't catch your breath AT ALL is the worst.

With the O2 i have right now seem to be seeing that it help with my shortness of breath that happens when my bp or hr go crazy. Hypothesis we came up with (my nurse and I) is that it helps because the blood that is circulating is fully oxygenated and so profusion is better. 

I hope you are able to find some answers and get some help soon!

Just as a side note, have you looked at any medication you are on? I've been on meds that suppress the respitory drive and quite litteraly "forget" to breathe, bringing my respiratory rate really low. 

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Have you ever had a Pulmonary Functions Test? Do you have an autoimmune disease with Dysautonomia? Do you have acid reflux? 

Strange questions, but those 2 things can cause lung damage. I would mention your symptom to your doctor and see if they would send you for a Pulmonary Functions Test. It could just be from tachycardia, but it could be something else.

I have an autoimmune disease with Dysautonomia, so mine is Interstitial Lung Disease. I thought it was just shortness of breath due to tachycardia. 

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46 minutes ago, Shannoncr said:

@WinterSown my brother had severe asthma as a kid, thank goodness it’s gotten better as he’s gotten older. My dad doesn’t have asthma but when he gets colds, it goes right to his lungs. My papa (my dads dad) said my dad was in an incubator for a bit because his lungs weren’t fully developed. 

I don’t wheeze or anything. No mucus. The cough is def associated with the palpitations -which knock on wood, haven’t been as bad lately. It’s just a really strange feeling. I wish I could describe it better. 

I think you need to describe  your symptoms to a doctor. If their office is not open over the weekend then consider calling Monday and make an appointment and/or ask for a call back because you can make a plan for what to do if your symptoms worsen. Shortness of breath, for anyone, is very serious. I hope you feel better soon. 

 

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1 hour ago, KiminOrlando said:

Have you ever had a Pulmonary Functions Test? Do you have an autoimmune disease with Dysautonomia? Do you have acid reflux? 

Strange questions, but those 2 things can cause lung damage. I would mention your symptom to your doctor and see if they would send you for a Pulmonary Functions Test. It could just be from tachycardia, but it could be something else.

I have an autoimmune disease with Dysautonomia, so mine is Interstitial Lung Disease. I thought it was just shortness of breath due to tachycardia. 

Hey, did they see your ILD on a CT scan? I have severely failed a lung function test with severe restrictive and obstructive patterns and low DLCO. But my HRCT with contrast came back as normal. So I don't know what it could be other than something so small they can't see it yet. I refuse to get more CT's though as I've had three and that's enough. I was responding to a post about the GERD causing lung issues last night and oddly enough I "for the first time in a long time" burped up acid and food all the way into my throat and lungs last night. my throat is still sore right now. I know that can cause the ILD. 😞

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1 hour ago, ANCY said:

Breathing, something we take for granted until it's difficult... I can relate to a lot of what you are saying and it happens to me when i get pre-syncope. When I do pass out sometimes I regain consciousness and feel like I'm suffocating, then follows some coughing, panting, and lots of yawning. Some actions, like yawning force you to breathe deeper and so can be beneficial in some situations. 

I have a blood clot in my lung right now and require supplementary O2 to keep my sats up. Even though it's small its caused fluid accumulation, collapse of the lower parts of my lungs, and straining my heart which is now enlarged. With all that I've just experienced I have a new found admiration for people with difficulty breathing. Feeling like you can't catch your breath AT ALL is the worst.

With the O2 i have right now seem to be seeing that it help with my shortness of breath that happens when my bp or hr go crazy. Hypothesis we came up with (my nurse and I) is that it helps because the blood that is circulating is fully oxygenated and so profusion is better. 

I hope you are able to find some answers and get some help soon!

Just as a side note, have you looked at any medication you are on? I've been on meds that suppress the respitory drive and quite litteraly "forget" to breathe, bringing my respiratory rate really low. 

I'm sorry about your blood clots. I had them too back in 2012. Felt like a mac truck had run me over for the first two years of recovery. I had to learn how to walk again because I had extensive DVT that was blocking all blood flow in lower veins. It's strange logic, but the smaller clots do tend to cause more damage than the larger ones like I had. They travel deeper into the lungs in areas that cannot compensate for the lack of blood flow. I had large bilateral PE. I also have a moderately enlarged heart 6 and a half years after my clots have been cleared out. I had a second CT 2 years after my original clots to see if they were gone. I hope you feel better. 

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9 minutes ago, blizzard2014 said:

Hey, did they see your ILD on a CT scan.

Yes, a HRCT. It showed the ground glass pattern. Then the PFT showed DLCO of 52%. I have gastroparesis with acid reflux. They are hoping it is just scarring from that. I'm on Methotrexate which can cause lung damage, but they haven't seen any progression of the ground glass pattern in my lungs, so they are leaning toward acid reflux being the problem. They were also concerned about cancer and sarcoidosis/neurosarcoidosis because my lymph nodes were highly inflamed. Biopsy of the lymph nodes ruled those out. To keep the methotrexate I have to keep getting the HRCTs. 

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32 minutes ago, KiminOrlando said:

Yes, a HRCT. It showed the ground glass pattern. Then the PFT showed DLCO of 52%. I have gastroparesis with acid reflux. They are hoping it is just scarring from that. I'm on Methotrexate which can cause lung damage, but they haven't seen any progression of the ground glass pattern in my lungs, so they are leaning toward acid reflux being the problem. They were also concerned about cancer and sarcoidosis/neurosarcoidosis because my lymph nodes were highly inflamed. Biopsy of the lymph nodes ruled those out. To keep the methotrexate I have to keep getting the HRCTs. 

I had a DLCO of 49. But apparently small airways disease and blood clots can also cause low DLCO. I know the HRCT only looks at one part of the lungs. They looked at the base of mines, so who knows. Just be careful with all of the CT scans. 1 low dose CT scan with contrast can give you 10 milisiverts of radiation. It all adds up and can cause cancer risk. If I would have known this I would have refused the scans. But sometimes the scans can save your life and that negates the small risk of cancer in the future. 

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@ANCY I am so sorry you’re going through all of this! I hope you get better soon! None of my meds have side effect of slowing respiratory rate. 

@KiminOrlando I’ve never added any pulmonary function tests. I also don’t know if I have an autoimmune disease, I am assuming I might because my ANA tests positive always & my dad’s side of the family, his siblings have random ones (One has Crohns & a congenital spine disease, the other has this weird skin one I can’t remember the name, it looks like he has little tiny burns all over but it’s not painful or anything) & his mom had type 1 brittle diabetes (which I have been tested for) & my dad has uveitis (he was tested for the Bernie Mac disease & it’s negative). I also haven’t been diagnosed with Dysautonomia, I am waiting for an appt with Dr Blitshteyn. The acid reflux is tough for me to answer. I do get it sometimes, but not all the time. It’s gotten better over the years.

Is the pulmonary lung test something I can ask my primary care to set up or refer me to? Same with the autoimmune testing?

I think a huge problem of mine is that when I am in the doctor office, I might not be having any symptoms or I’m having symptoms that seem normal to me because I’ve had them so long so I don’t bring it up. I minimize everything. If I complain about things, like how I might not be feeling or why i can’t do something, I’m often made fun of by family (they call me Barb, which is my dads mom’s name. She was ill all the time - but everything was invisible until her bones started breaking) I also get afraid of offending the doctor when I ask for things. Like I asked my cardiologist if she thought I had POTS but she told me no because it would’ve shown on my TTT in 2005. My symptoms have changed since 2005 (diagnosed with neurocardiogenic syncope) & have progressively gotten worse in the last year. She wants me to get a second opinion & see neuro. 

@blizzard2014 Are the blood clots in your lungs painful? Aside from having trouble breathing, like does it hurt to try to take in deep breaths?

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@Shannoncr - I have the shortness-of-breath that you describe too. Sometimes I feel like I just can't take e deep enough breath and even breathe more rapid to make up for it. Whenever I had this while I was at the doc or in the ED my PO2 ( oxygen level in blood they check in your fingertip ) was totally OK, chest xrays and exam totally normal. At first they said it was anxiety but my autonomic doc says it is a common POTS symptom and has to do with circulation changes in the chest. Having said that - you should get it checked to make sure it's not something serious. If all comes back OK then it probably just another POTS thing. 

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11 hours ago, Shannoncr said:

@ANCY I am so sorry you’re going through all of this! I hope you get better soon! None of my meds have side effect of slowing respiratory rate. 

@KiminOrlando I’ve never added any pulmonary function tests. I also don’t know if I have an autoimmune disease, I am assuming I might because my ANA tests positive always & my dad’s side of the family, his siblings have random ones (One has Crohns & a congenital spine disease, the other has this weird skin one I can’t remember the name, it looks like he has little tiny burns all over but it’s not painful or anything) & his mom had type 1 brittle diabetes (which I have been tested for) & my dad has uveitis (he was tested for the Bernie Mac disease & it’s negative). I also haven’t been diagnosed with Dysautonomia, I am waiting for an appt with Dr Blitshteyn. The acid reflux is tough for me to answer. I do get it sometimes, but not all the time. It’s gotten better over the years.

Is the pulmonary lung test something I can ask my primary care to set up or refer me to? Same with the autoimmune testing?

I think a huge problem of mine is that when I am in the doctor office, I might not be having any symptoms or I’m having symptoms that seem normal to me because I’ve had them so long so I don’t bring it up. I minimize everything. If I complain about things, like how I might not be feeling or why i can’t do something, I’m often made fun of by family (they call me Barb, which is my dads mom’s name. She was ill all the time - but everything was invisible until her bones started breaking) I also get afraid of offending the doctor when I ask for things. Like I asked my cardiologist if she thought I had POTS but she told me no because it would’ve shown on my TTT in 2005. My symptoms have changed since 2005 (diagnosed with neurocardiogenic syncope) & have progressively gotten worse in the last year. She wants me to get a second opinion & see neuro. 

@blizzard2014 Are the blood clots in your lungs painful? Aside from having trouble breathing, like does it hurt to try to take in deep breaths?

I hear the smaller clots are very painful because they actually block blood flow in certain areas and parts of the lung can die. What scares me is that my lungs had no pain from huge blood clots. I just happened to complain about some SOB that I had when climbing the stairs. They decided to run a CT because I already had the extensive DVT in right leg. But I did feel some pain after treatment. I have friends who were clenching their chest in extreme pain from their clots. Sometimes you will feel a sharp stabbing pain when my inhale if the clots are deep inside your lungs. 

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13 minutes ago, MomtoGiuliana said:

Shortness of breath can be a symptom of POTS:

https://www.dinet.org/content/information-resources/pots/pots-symptoms-r96/

I remember having shortness of breath in the past with POTS--or at least a sensation like that.

 

10 hours ago, Pistol said:

@Shannoncr - I have the shortness-of-breath that you describe too. Sometimes I feel like I just can't take e deep enough breath and even breathe more rapid to make up for it. Whenever I had this while I was at the doc or in the ED my PO2 ( oxygen level in blood they check in your fingertip ) was totally OK, chest xrays and exam totally normal. At first they said it was anxiety but my autonomic doc says it is a common POTS symptom and has to do with circulation changes in the chest. Having said that - you should get it checked to make sure it's not something serious. If all comes back OK then it probably just another POTS thing. 

I have low oxygen dips when standing up and walking around that pop up from time to time. I had this documented by sleep doc on a 6 minute walk test. My oxygen level dropped to 91 for a few seconds. Maybe because of the changes in HR and BP oxygenated bloods does not always get to the fingertips like it should, then the heart speeds up and fixes it. I notice that when my oxygen is low on pulse ox, sometimes my HR will rise until the oxygen levels are brought back up again. I will show some pics of this later on. I have some saved. Either my pulse ox is broken and my doc's is also broken, and my BP monitor is broken, or this really happens. My PCP said OMRON is a good BP monitor and he sells the same model to patients in his office, said it is not the monitor. 

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29 minutes ago, blizzard2014 said:

 

I have low oxygen dips when standing up and walking around that pop up from time to time. I had this documented by sleep doc on a 6 minute walk test. My oxygen level dropped to 91 for a few seconds. Maybe because of the changes in HR and BP oxygenated bloods does not always get to the fingertips like it should, then the heart speeds up and fixes it. I notice that when my oxygen is low on pulse ox, sometimes my HR will rise until the oxygen levels are brought back up again. I will show some pics of this later on. I have some saved. Either my pulse ox is broken and my doc's is also broken, and my BP monitor is broken, or this really happens. My PCP said OMRON is a good BP monitor and he sells the same model to patients in his office, said it is not the monitor. 

I think you are right on point as that is EXACTLY what my pulmonologist told me a couple years ago. He was trying to determine if I really needed oxygen since it was only dipping and coming back up. After he pointed out the profusion problems with low BP and we watched BP and O2 in correlation to each other it was very obvious that BP was the culprit. 

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The first 2 years after the initial flare and thru the diagnosis of my dysautonomia-NCS, I have had the breathing issues you describe. I still do to this day as my meds start to wear off or in the eve when I am tired. Its a common part of dysautonomia for some of us. I take deep breaths to compensate and do a bit more yawning-especially once I am in bed and lying down. I have sleep apnea and so wear a CPAP which was difficult to get used to as well.  Sorry you are going through so much, I hope this info helps

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Yes to your breathing symptoms. Mine started almost 3 years ago. That is my main POTS symptom. It is everyday all day. If i fight it then i hyperventlate and end up in the ER. I had all the pulmonary testing, chest CT, clot tests, you name it. Inhalers made it worse ( turns out it was upping my HR which is why i felt worse). Still no answer on it except it is part of my autonomic dysfunction. My symptoms have eased since it started but it is still there. My O2 stats are always 98-100 so i try not to worry about. Trying different positions can sometimes help get that deep breath. 

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On 6/1/2018 at 9:13 PM, blizzard2014 said:

I had a DLCO of 49. But apparently small airways disease and blood clots can also cause low DLCO. I know the HRCT only looks at one part of the lungs. They looked at the base of mines, so who knows. Just be careful with all of the CT scans. 1 low dose CT scan with contrast can give you 10 milisiverts of radiation. It all adds up and can cause cancer risk. If I would have known this I would have refused the scans. But sometimes the scans can save your life and that negates the small risk of cancer in the future. 

 

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My recent PFT also showed low DLCO, 49. Same as yours...how ironic. I’m seeing a new Pulmonologist at the end of the month, but I’ve been trying to do some research in advance. I found one study showing DLCO could/should be measured in POTS patients both supine and upright. Considering our tendency towards low blood volume and blood pooling, it makes since to me. I understand there are many reasons for low diffusion rates; however, I’ve not found many reasons/ treatments for SOB in POTS. I just wanted to touch base, and let you know there one more of us out there. Have you discovered anything new about your condition? 

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This was my second biggest symptom that lead me down the Dysautonomia path.

Started the very day they put me on beta blockers, I would comment that it felt as if my lungs no longer work and I had to remember to breathe. It was even worst when talking. They took me off beta blockers but the feeling of breathlessness lasted a full year after.

The worst one was forgetting to breathe when asleep, I would have nightmares that I was calling an ambulance because I could no longer breathe and worried how quickly they could get here. Turns out its one of the tasks of the Autonomic Nervous System, to detect oxygen and carbon dioxide in your blood, and get you to breathe appropriately whilst you are asleep.

Living alone, it is something I though I could possibly die of, if I become unconscious due to my breathing having stopped, I wouldn't be able to wake up from it.

And it wasnt just a feeling, it was real. When in hospital, I noticed the machine constantly bleeping, because my blood oxygen was only at 87% when awake!.

I therefore bought my own oximeter in an attempt to get evidence so the health service would stop fobbing me off with the "its anxiety" fob off.

Here below is an example of what half the nights looked like oxygen wise.

Fortunately, in April, something happened that meant my breathing issues sorted themselves out, and my palpitations really reduced.

 

 

Just sleeping Printing SpO2 Report.jpg

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7 minutes ago, Peter Charlton said:

This was my second biggest symptom that lead me down the Dysautonomia path.

Started the very day they put me on beta blockers, I would comment that it felt as if my lungs no longer work and I had to remember to breathe. It was even worst when talking. They took me off beta blockers but the feeling of breathlessness lasted a full year after.

The worst one was forgetting to breathe when asleep, I would have nightmares that I was calling an ambulance because I could no longer breathe and worried how quickly they could get here. Turns out its one of the tasks of the Autonomic Nervous System, to detect oxygen and carbon dioxide in your blood, and get you to breathe appropriately whilst you are asleep.

Living alone, it is something I though I could possibly die of, if I become unconscious due to my breathing having stopped, I wouldn't be able to wake up from it.

And it wasnt just a feeling, it was real. When in hospital, I noticed the machine constantly bleeping, because my blood oxygen was only at 87% when awake!.

I therefore bought my own oximeter in an attempt to get evidence so the health service would stop fobbing me off with the "its anxiety" fob off.

Here below is an example of what half the nights looked like oxygen wise.

Fortunately, in April, something happened that meant my breathing issues sorted themselves out, and my palpitations really reduced.

 

 

Just sleeping Printing SpO2 Report.jpg

I wish mine would resolve. 3 1/2 years and counting of not being able to get a deep breath consistently. 

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Yup. Have always had a feeling (even as a kid sometimes) that I needed to take a yawn but couldn’t catch my breathe.

 

last year went and got breath tests done - they all came back fine and it was deemed a nervous tick / anxiety 🙄

 

Going through a Dysautonomia DX finally right now.

 

youre not alone :) idk what it is yet, so I can’t give you that but I do have shortness of breathe feeling! 

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On 6/1/2018 at 5:11 PM, Shannoncr said:

hi, I could be totally alone in this, but does anyone else feel like you’re not getting enough air? I get out of breath doing almost anything but even when I am just sitting here, I feel like I just can’t get a good enough breath of air. I often sigh a lot (& loudly, almost like a panicked sigh) but it’s involuntary. I noticed on my discharge paperwork from the hospital a couple months ago, my breaths per min were 16 when I was triaged & upon discharge it was only 10. The breathlessness is way worse when I have palpitations because they take my breath away & I cough involuntarily, it feels like a way to restart my heart or something. I dunno. I could be totally crazy. Even when I yawn, I feel like it’s not a good yawn. 

Hey I'm going thru something similar. Did you ever get any answers?

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