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Breathing Issues


Mike83IRL

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Hey guys,

I know some of you here have breathing issues also,and was just wondering if anyone has ever come across a good explanation of this?,I was diagnosed over seas,and my Docs here,while very helpful don't seem to have a good grasp of how dysautonomia effects my breathing, I know lots of people here have good medical knowledge and I'm always trying to get more info so heres a few questions if anyone has something to add..

1. )Is there another mechanism or can low BP alone make breathing severely difficult?

2.) Has anyone here with breathing issues had them improve after going on BP meds? (Midodrine,Flourinef etc.)

3.) Does anyone here feel like Dysautonomia effects their breathing muscles?

4.) Has anyone come across any other treatments,meds or just lifestyle tips that helped with breathing issues?

Thanks in advance for any help,want to hear if anyone has anything to add as breathing issues have always been the most life disrupting problems Dysautonomia has brought me.

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Hi Mike. I have breathing problems and I don't have a good medical explanation other than I know the midodrine helps me alot and I also know that I have extreme blood pooling (40% just upon sitting up). I asked my GI doc if the lower body has blood pooling, then why don't the intestines, stomach, etc. have more blood to work and therefore work just fine. He said that when the blood pools, it pools in the tissues and doesn't go where it is supposed to go. Therefore, I assume that maybe our lungs and/or our diaphragm may not be getting what they need also? Just a guess. I'm sure someone else could say something much more enlightening. Lol.

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Thanks Raisin,

as I am going on Midodrine soon your post gives me cause for optimism,

Can I ask what test the were able to do to measure blood pooling? getting some more tests done soon would love to find out if that's an option over here.

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I was told that low BP can effect breathing, I do not always see this connection. I can go weeks struggling , then it might lift for a bit. When I am at my worst..diaphragm breathing, slow deep breaths, and trying to distract myself can help, but sometimes not then it is rather scary. It is often as though I can't breath automatically, it takes effort. Also at times I can take deep breaths but my body acts as though I am breathing water or something. Like it is craving air and the air I'm breathing isn't penetrating.

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I feel like I have muscle tightness from the bottom of my sternum up into my throat, with shortness of breath. My primary care doc did a pulmonary function test which showed that I had 'air trapping' which was suggestive of neuromuscular disease. She then referred me to a pulmonologist which repeated the PFT and he said it was normal. Sometimes I feel like my diaphragm cramps up. I don't know what the cause is. I gave up trying to find out :(

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Angelloz that all sounds very familiar to me,I get the very same sensations,one several occasions when I have gotten these symptoms to an extreme,and have had to visit my family doc,he has sent me straight to ER by ambulance,they don't know what to do there other than oxygen mask,which does help some.

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Unfortunately, the beta blocker and midodrine have not helped with my shortness of breath. I had high hopes of that, but to no avail. They do keep my heart rate down and help with my syncope episodes though.

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I think the test I had showing this was called hemodynamics testing. They put a radioactive tracer in me while I was supine and watched where all my circulation was going. At the end, I just had to sit up and they took some more measurements. They were able to measure blood cell mass, blood volume and blood pooling. Pretty cool actually. Doc said my volume was down, blood cell mass decreased and saw the 40% pooling just upon sitting up. He said we are supposed to pool about 10-12% when we stand and within a couple seconds, our bodies push most of the blood back up. I felt vindicated which I'm sure many here understand with most of us feeling like dog poo and every test coming back normal. I sure hope you can get those tests also. For me, yes, the Midodrine has been very helpful. Gotta get those blood vessels to cooperate, eh?! Lol.

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I feel like I have muscle tightness from the bottom of my sternum up into my throat, with shortness of breath. My primary care doc did a pulmonary function test which showed that I had 'air trapping' which was suggestive of neuromuscular disease. She then referred me to a pulmonologist which repeated the PFT and he said it was normal. Sometimes I feel like my diaphragm cramps up. I don't know what the cause is. I gave up trying to find out :(

I had two PFT's. Both showed air trapping. One as called normal. Another was called COPD. Two different doctors. CT of the chest as clear and unremarkable. I do have a history of smoking. I still do not by the explanation. My breathing problems came along with the rest of this.

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Hey guys,

I know some of you here have breathing issues also,and was just wondering if anyone has ever come across a good explanation of this?,I was diagnosed over seas,and my Docs here,while very helpful don't seem to have a good grasp of how dysautonomia effects my breathing, I know lots of people here have good medical knowledge and I'm always trying to get more info so heres a few questions if anyone has something to add..

1. )Is there another mechanism or can low BP alone make breathing severely difficult?

2.) Has anyone here with breathing issues had them improve after going on BP meds? (Midodrine,Flourinef etc.)

3.) Does anyone here feel like Dysautonomia effects their breathing muscles?

4.) Has anyone come across any other treatments,meds or just lifestyle tips that helped with breathing issues?

Thanks in advance for any help,want to hear if anyone has anything to add as breathing issues have always been the most life disrupting problems Dysautonomia has brought me.

I have more than one thing that gives me trouble breathing.

Low blood pressure, and pooling blood seams to make me short of breath.

Occasionally upon waking up, I get the sensation that the assist is not there. I will wake up fine, initially. Then it is as if a switch is flipped and there is a change. I Know there is something to it, because I have seen my O2 go from 98 to 89. It is a very uncomfortable feeling, but has never lasted long enough to get seen for it. This has happened during the day, but more often it is soon after waking up.

I have a transition sleep apnea like problem, that fortunately, has not troubled me in some time. Knock on wood. When I have had these spells, simply becoming relaxed could be a problem.

I am now reacting to medication that I did not react to before, and they will give me trouble breathing soon after taking them. This is associated with post nasal drip, itchy eyes, etc.

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In my experienxe the best course of treatment for these breathing issues is the antibiotic Erythromycin. These breathing issues are usually caused by bacteria and erythromycin is particularly good for respiratory infections as well as inflammation as long as you are not allergic to it. Also be careful for prolonged QT interval and interaction with other meds. But thruthfully I think it's a relatively safe treatment if you are suffering the problems you describe. COPD, asthma and all these so called "lung diseases" are really caused by bacteria. I also believe a lot of people with dysautonomia have chronic lung infections which causes autonomic neuropathy and subsequently pots/dysuatonomia. It all starts with infections and viruses. You will not see infection on a cat scan or x-Ray. It's opportunistic. It's an overgrowth of normal bacteria that sits in your body. The immune system is supposed to keep all this in check but for various reasons it can not which causes the bacteria to grow out of control. Even pseudomonas and other types of bacteria in the lungs is more common than you think. We are very limited in our understanding of bacteria and the way it behaves. This is the common misunderstanding in medicine right now. Docs are being trained to identity only one kind of an infection.... One with a white blood cell count or own that shows on a cat scan. While it is true these are tools to identity infection. It only identifies one type of infection, not an opportunistic one or simply a disbalance in bacteria. Just my perspective. erythromycin may be worth a shot.

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Last month, I would've said it was mostly at night. However, it's been evenings and nights this week. I started prednisone and a few hours after eating lunch (so, ~7 hrs after taking low dose prednisone), I notice I'm feeling bloated and short of breath. It's very uncomfortable. I am able to eat dinner fine (but I don't eat that much) and I'm taking a smaller 1mg) dose of prednisone at that time. However, I had trouble at bedtime being short of breath (significant stress after dinner-dog had an accident all over the first floor...). My family doctor wants me tested with an upper scope to rule out reflux. Maybeee but I still think it's very low blood pressure mixed in with autonomic dysfunction.

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Okay so this seems more common with us than I tough,Jon,thanks for the info but unfortunately my disautonomia would appear to have been caused by a C-spine injury,so I don't think erythromycin would do much for me,no wheezing etc,lungs are 100%,just don't have the power in respiratory muscles.

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Hi mike, I don't know if anyone's already said what I'm about to say, but I definitely get breahing difficulty, specifically when I am in an upright position and the POTS starts showing. It makes me have to forcefully breathe, feels as if my muscles strongly don't want to breathe in. Really really unpleasant!

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One of my worst symptoms, ill be sat there then it will feel like I need a deep breath, cant get it and then it gets tighter inside and I feel weird. Sometimes I get a funny smell in my nose and head feels funny.

Its improved significantly since lowering my florinef and exercising, but its still there and its horrible, I cant bare it.

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Andy,

Any chance you're experiencing a seizure? Your description sounds a little like an aura.

I mentioned elsewhere that my doc wants me tested for reflux to rule it in or out, for starters. But here's a bizarre observation that may or may not be relevant. I sometimes have these in the evening. In the morning, urine us supposed to be concentrated. One time after a nighttime breathing episode, I tested my morning urine and the specific gravity was low! So I wonder if I was, indeed, holding in water which I flushed out in the morning. Anyone else have test strips (I had to buy them through Amazon cuz they're not sold locally) to test this?

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Its not a seizure far from it maybe I explained it wrong but I find it difficult to explain my symptoms in even speaking to a doctor!

My breathings getting worse again!! I stopped exercising as I got lazy as started to feel better so started again 2 days ago!

Man this really does suck :/

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