millyaulait Posted August 20, 2014 Report Share Posted August 20, 2014 I'm not sure if everyone with POTS/NCS has this issue, but I figured I would ask anyway.The issue I have is that on so many occasions I have quite a lot of difficulty getting a full breath in. This mostly happens when I'm really tired just generally, and it ALWAYS happens when I've been standing up too long or I'm walking around.I fall more into the NCS part of things so essentially what happens is that when I stand up my blood starts pooling in my stomach within a few short seconds, then I start to get pre-syncope symptoms, including my heart beating hard/fast and my breathing becoming laboured.I wonder if it's to do with the blood pooling? I'd love an actual medical explanation, just out of sheer curiosity more than anything. I thought maybe that if my heart is working harder to keep blood "up" then it's sort of like exercise (like if someone goes on a jog, their breathing obviously becomes faster and harder until they rest) and so it's like the same mechanism? But then sometimes I can feel perfectly "okay" and still have a bit of trouble breathing deeply, even if I can breathe slowly. I've checked with several doctors & it's not a muscular thing or anything stopping me from actually breathing properly. Unfortunately my doctors are not really POTS/NCS specialists so they can't answer my questions above.If anyone knows I would loooooove to know, thank you! Quote Link to comment Share on other sites More sharing options...
lewis Posted August 20, 2014 Report Share Posted August 20, 2014 This is currently my worst symptom at the moment, my orthostatic intolerance is barely even around anymore, only raises 10bpm at the most but the breathing problem is driving me nuts Quote Link to comment Share on other sites More sharing options...
dkd Posted August 20, 2014 Report Share Posted August 20, 2014 I would like to know also since this is my worst symptom. I have NCS also, and feel short of breath after standing.I had a pulmonary function test at my GPs office that suggested 'possible neuromuscular disease' due to air trapping. She sent me to a pulmonologist and he repeated the test and he said it was normal. I don't feel 'normal' though He didn't give me any answers. Told me to come back in 6 months, but I didn't go. Sometimes I feel like my diaphragm is tight, so I wonder if that is restricting my lungs? I don't know. Very frustrating!! Quote Link to comment Share on other sites More sharing options...
blueskies Posted August 21, 2014 Report Share Posted August 21, 2014 I get the tight diagram feeling but feel it is to do with gi symptoms in my case. Sometimes I get so out of breath it was an effort to talk. It used to happen quite a bit and I got used to it. I never even mentioned it to a doctor and I should have. But I have seen this problem/symptom addressed a number of times on the forum.It doesn't happen to me that often anymore, knock on wood.blue Quote Link to comment Share on other sites More sharing options...
ctg78 Posted August 21, 2014 Report Share Posted August 21, 2014 Have you tried biofeedback? A device called emwave 2 on amazon is around $199 (less on ebay) has helped me. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted August 21, 2014 Report Share Posted August 21, 2014 I also feel like I have a tight diaphragm that is related, somehow, to gi issues. It is very annoying. I don't like not being able to breathe normally. Quote Link to comment Share on other sites More sharing options...
lewis Posted August 21, 2014 Report Share Posted August 21, 2014 I noticed this morning that I was feeling just fine until about twenty minutes after I took my propranolol. Is anyone else also taking this that had breathing trouble? I too feel like it also had something to do with gi issues. Quote Link to comment Share on other sites More sharing options...
stephsurf Posted August 21, 2014 Report Share Posted August 21, 2014 I noticed this morning that I was feeling just fine until about twenty minutes after I took my propranolol. Is anyone else also taking this that had breathing trouble? I too feel like it also had something to do with gi issues.Propranolol is not entirely cardioselective which means it can act on the same adrenergic receptors that we have elsewhere in our bodies. We so happen to have them in our airways too and this is why you wouldn't want to give a non cardioselective beta blocker to a patient who had breathing difficulties such as asthma. Maybe that will help you understand a little why you might feel possibly short of breath and have some feeling of chest tightness? Not saying you have asthma though, this is more of a side effect most likely in your case Quote Link to comment Share on other sites More sharing options...
sue1234 Posted August 21, 2014 Report Share Posted August 21, 2014 Stephsurf, my brain only gives me limited "windows" where I can understand things, and today is not one of them. I did realize that some beta blockers are not good for asthmatics. Can you, or someone, explain what the beta blockers do to the vessels in the lungs by how they affect the adrenergic receptors? Quote Link to comment Share on other sites More sharing options...
stephsurf Posted August 21, 2014 Report Share Posted August 21, 2014 Stephsurf, my brain only gives me limited "windows" where I can understand things, and today is not one of them. I did realize that some beta blockers are not good for asthmatics. Can you, or someone, explain what the beta blockers do to the vessels in the lungs by how they affect the adrenergic receptors?Hello Sue, no worries at all. Hopefully I can explain it in a little more detail to help you better understand. I do pharmacy so have a background with drug mechanisms etc but please tell me if I'm being confusing!We all have beta adrenergic receptors in our bodies which are sympathetic. In other words when stimulated they can in extreme cases induce the fight or flight response. That would be the increase in heart rate, blood pressure, feeling of anxiety, sweaty palms to name a few that any normal person might feel if they are feeling anxious or in our case is heightened more so. This response is caused by neurotransmitters which bind to the receptors to initiate this response. For example this will cause the blood vessels to constrict which will increase blood pressure. There are however different types of beta adrenergic receptors such as beta1 and beta2. Some of these receptor are found in the heart such as beta1 and others such as beta2 are found elsewhere in the body such as the lungs and airways in the smooth muscle. Propanolol is a type of non cardioselective beta blocker which means it doesn't entirely act on just the beta1 receptors that are found in our hearts and therefore can block the beta2 receptors in the airways. When this happens it can in some people it can induce constriction of the smooth muscle which in people are are particularly sensitive to this (such as asthmatics) can cause bronchospasms. This in turn can then instigate an asthma attack. In a normal individual who doesn't have underlying issues with their airways this doesn't pose any significant problem but as you have realised can result in some of the known side effects of propanolol such as shortness of breath which may give you a feeling of tightness. However it is worth noting that some people get an anxious feeling taking propanolol, usually this would subside after taking it consistently however I'm sure many of us with pots or any form of dysautonomia have some sort of on edge feeling which doesn't help and this could manifest itself in many ways such as a tight feeling. I hope this helps you understand further. Let me know if you have any questions and I'll be happy to try and answer them. But if it is concerning you too much I would advise having a discussion with your doctor as sometimes beta blockers in POTS patients can sometimes make us feel worse than when we weren't on them at all. This is because although it lowers our heart rate, the increase in heart rate doesn't have a underlying pathological abnormality. In other words the increase in heart rate is actually doing us a favour by pumping blood at a faster speed so oxygen can do its best to reach the places we need such as our brain. Reducing the heart rate a significant amount by beta blockers (which will also lower blood pressure somewhat) will counteract the two processes by which our bodies are trying to compensate for our hypovolaemic state. If we are preventing that from happening too much you will feel worse which again is why many POTS patients can't tolerate them. Obviously there has to be a balance between counteracting completley and our heart rates going far too high which will also cause the shortness of breath, dizziness etc that we are already used to. Quote Link to comment Share on other sites More sharing options...
bellgirl Posted August 21, 2014 Report Share Posted August 21, 2014 It's quite a conundrum isn't it?! Well put Stephsurf...I have more trouble with this in the winter, but it's nothing like asthma (controlled now), which I've had previously and sometimes gives me trouble after a respiratory virus. I'm on a cardioselective beta blocker, Bystolic, which works very well, actually. It has a long half life, and I break my pill in half. But the trouble breathing, is literally like a vise squeezing the life out of me!! Malfunctioning baroreceptors, which can cause pooling and with vasoconstriction in the heart and lungs...I was even checked for cardiac blockage, it was so bad!!I also coughed up two mouthfuls of blood (a quarter of a cup) from my lungs back in 2004, which I believe was pooling Missyaulait, but that was before I was diagnosed. I thought I had TB or cancer. The scan came back showing a mass. The pulmonologist thought it was bronchitis...pish!! There are too many uninformed physicians...But on the bright side, there is hope!! I'm doing a lot better, but I'm taking a lot of meds and supplements. You need a specialist who knows what they are doing, an autonomic disorders specialist, or a cardiologist or a neurologist who is familiar with dysautonomia!! You also need to do your own research!! You also need to be patient. Beta blockers are all different. Give it a month; if you are still feeling like a slug, try another with the doctors order, of course. My doctor started one new med at a time, so we would know the side effects. That's the best way to do it, otherwise you will never know which one is to blame for bad side effects. You are your best advocate!! To better days ahead. Quote Link to comment Share on other sites More sharing options...
E Soskis Posted August 21, 2014 Report Share Posted August 21, 2014 I often have difficulty taking deep breaths and at times become short of breath for no apparent reason. I understand that blood vessels become floppy with dysautonomia and blood pools in the mesenteric system of the abdomen - when it does this, there is not enough blood available to other body systems. The restriction of blood flow can be felt in the chest causing chest pain or trouble breathing - the muscles of respiration require adequate blood flow and when restricted, the chest cannot "breathe" very well. This can be particularly bad at night - especially if I lie flat - so, I sleep with my head up on a wedge pillow and several other pillows - this helps a lot. Quote Link to comment Share on other sites More sharing options...
Mike83IRL Posted August 23, 2014 Report Share Posted August 23, 2014 This has also been my main symptom for 4.5 years now,I have never had an answer until recently,I have yet to begin treatment so I don't know if they got it right yet but here's hoping!,..anyway it's a verrry long story do here's to link to my post last week....http://forums.dinet.org/index.php?/topic/25884-new-diagnosisfinally-an-explanation/ Quote Link to comment Share on other sites More sharing options...
andybonse Posted August 25, 2014 Report Share Posted August 25, 2014 worst and main symptom, I found exercise and doing more has really really helped it and also lowering florinef. Quote Link to comment Share on other sites More sharing options...
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