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The cause of your SOB could be muscular in origin. Since acetylcholine plays such an important role in POTS and seem to be in the low end for the most part. This could be preventing your respiratory muscles from contracting efficiently enough to fully expand your lungs. Is that what it feel like ? Like you can't expand your lungs fully. I have this same problem and after a thorough evalution by the pneumologist, he suggested the problem could be muscular in origin. He found nothing wrong with my lungs and could be seen or measured. Does using mestinon help with sob ?

haven't tried mestinon, but I heard it raises BP, mine is stable I dont know if I want to raise it? Is that the best acetylcholine med? I'm going to we a POTS neuro in January.

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I posted a new post on it and I think it could be causing some of our SOB problems, pooling issues and a host of other things.

It is related to NO and acetylcholine and affect all vasodilation and contration

Endothelial dysfunction!

This company gives the test for it:

http://www.itamar-me...om/EndoPAT.html

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Its interesting that everyone seemed to ignore the only two research studies conducting on breathlessness in POTS. As Ive said previously it relates to sympathetic sensitisation and chemoreceptors. Patients with SOB tend to have pretty high tachycardia and even hypocapnia from involuntary hyperventilation.

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I haven't ignored it, but I tested the hyperventilation out and I wasn't affected either sitting or standing, so I ruled it out.

Also I'm leaning toward Pulmonary Hypertension, going to get it checked out, especially in a Tilt Table environment. It is probably a POTs PH, they might miss it. A lot of POTS people get told they have it one test and then not on another probably because of the variation and time of their flare.. Maybe NO level, maybe Mast Cell level, Mito levels etc.. whatever is causing their localized pulmonary BP to vary at the time.

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Did you time yourself hyperventilating for at least 2 minutes? I had a doctor do this with me and it definitely is an issue in my case. I had all kinds of symptoms. I do believe there is something to that idea. Reading about it - it changes the alkalinity of your blood and that affects how you carry oxygen throughout your body. If we hyperventilate that increase the alkolosis and we carry even less oxygen. It can also be affected by your brain stem. In my case - recently - I was snorkling and had my head sort of tilted back a little for awhile looking all around - plus breathing through the snorkel tub - and being in salt water - any ways long story short. Started having real bad heart pains and started feeling that panic feeling - was over tired had used my arms too much. Got out and had one of those hyperventilate spells. I do have a small amount of cerbral tonsil drop - not enough to be called Chairi - with a lying MRI. But, could have possibly affected me - along with the other issues.

Issie

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Its interesting that everyone seemed to ignore the only two research studies conducting on breathlessness in POTS. As Ive said previously it relates to sympathetic sensitisation and chemoreceptors. Patients with SOB tend to have pretty high tachycardia and even hypocapnia from involuntary hyperventilation.

While it's interesting the 2 research studies found that patients with SOB tend to have high tachycardia, when I have shortness of breath it is not related to high tachycardia.

My doctor thought it was tachycardia causing SOB and prescribed valium to reduce my resting heart rate. Valium reduced my resting heart rate from 85 to 70, I got even worse shortness of breath, and nearly passed out! He then realised my SOB had nothing to do with tachycardia.

When I have had episodes of very fast resting HR I have ALSO felt short of breath. But the SOB I am talking about that happens normally and on a daily basis for me is something completely different to the type that is related to high tachycardia.

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Issie,

My oxygen levels are very normal and high. I tried hyperventilating for 2 minutes and feel lightheaded but my shortness of breathe is not affected at all. Anyone who hyperventilates should feel lightheaded. This might be a cause for a very small amount of SOB but definitely not mine.

One the one hand they are dead on about NO levels. But No levels dictate BP. They are missing the the boat by starring at the anchor ;)

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I don't think that shortness of breath is "caused" by hyperventalating - but do think that hyperventalating may be caused by shortness of breath. Then we over breath, "hyperventalate" trying to catch our breath and that should make anyone dizzy - POTS or not. We lower our CO2 with hyperventalation and that makes our blood not carry the oxygen properly to our brains. Our blood oxygen may be okay - but is our brain O2 fine? You can only measure the oxygen in your blood with an O2 meter.

I wonder if my breathing through the snorkel and not breathing properly brought on my "spell" or was it too much salt or the cold water causing constriction of my veins and then standing upright from a lying position - out of water - did that with the changes in my O2 and possible compression of my brain stem cause the hyperventalation eposide?

There could possibly be a variant of the Pulmonary Hypertension causing some of our issues - but, they would be transient and not there all the time. If it is true PH it would be there all the time. You would need to be on oxygen 24-7 and your heart would be enlarged and there would be signs in a lung x-ray with possible fluid collection in and around the lungs/heart. (This is with advanced issues, however.) The test for this is very invasive and there are other test they can do to point to this as an issue or probable and/or rule it out.

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When I have had episodes of very fast resting HR I have ALSO felt short of breath. But the SOB I am talking about that happens normally and on a daily basis for me is something completely different to the type that is related to high tachycardia.

This is true for me too. The shortness of breath comes first and then the tachy.

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Ok. Now I'm confused because I thought one of Julian Stewart's earlier studies showed that "voluntary" hyperventilation did NOT result in the same decrease in cerebral blood flow/ hypocapnia that happened with the "reactive" hyperventilation that occurs in some POTS patients when they're symptomatic.

Rama- Not ignoring the studies. As always, I appreciate you posting the links to these studies and read them. Problem is the brain fog makes me have to go back over them time and again and then go back over the older studies that are used as background for the current study.......

Lotusflower- good point about the two types of SOB. I have had the hyperventilation happen when I've had bradycardia as well. Some of my worst episodes of hyperventilation have been when they put me back down to supine after my TTTs when my BP had crashed (30s/20s with all 3 TTTs). I didn't have the hyperventilation too much when I was standing that I recall...it was definitely worse after I laid down...like my body was trying really hard to readjust something that was WAY off.

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Here is the best information I could find on the web about PH, they are considered the best authority by the American Lung Association http://www.phassocia...ge.aspx?pid=974. They also have the best Dr. list I could find..

Also the studied that Dr Stewart conducted very few patients, I believe less than 30. I can ask him he would agree further studying would need to be done to call that evidence conclusive... Just because no studies have been done, doesn't mean as patients we shouldn't leave any stone unturned. Should they not have checked for because there is no study showing the connection btwn lung disease and Dysautonomia. Personally I want to rule everything out with top specialists and don't see the harm in it..

SYMPTOMS

The symptoms for all types of pulmonary hypertension may be similar, but the severity of the symptoms usually correlates with the progression of the disease.

  • Breathlessness on exertion
  • Chest pain (also called angina pectoris)
  • Dizziness upon standing, climbing stairs, straightening up from a bent position, or even while just sitting
  • Fainting (also called syncope)
  • Loss of energy
  • Swollen ankles and legs (also called edema)
  • Depression
  • Dry cough
  • Raynaud’s Phenomenon (chalky white and/or dusky blue fingers that may be painful and can sometimes be provoked by the cold)

In advanced stages of pulmonary hypertension, minimal activity may produce some or all of these symptoms. Patients in advanced stages may experience irregular heartbeat, a racing pulse, passing out, and difficulty breathing at rest.

If a doctor can see no other obvious cause for these symptoms, pulmonary hypertension should be considered and diagnostic tests should be performed.

Edited by MomtoGiuliana

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Hi Rich-

I also have MCAD & suspect you may as well. Breathing is an issue for me too- at times. I take daily singulair and use Atrovent vis nebulizer when I need extra relief. Albuterol & Xopenex didn't help me at all.

You, like many, have already stumbled upon a pretty good MCAD med regimen out of necessity- with the exception of an H-1. You certainly are displaying allergy symptoms. Why not talk to your docs & consider adding a zyrtec in the AM and something stronger at night, like benadryl. If that helps, you want to begin working with a good allergist and consider a stronger (prescription) H-1 at night, like atarax or doxepin.

You already have the H-2 and singulair covered. Some end up also needing mast cell stabilizers, like gastrocrom and ketotifen.

If it is MCAD, you should get some pretty decent symptom relief once you tweak your meds.

I read this a week or so ago and had to tune in to macks mom and to rich. For 9 years ive had the terrible breathing probs as described by rick. No one could ever find out what caused it. Many, many tests. Many trips to the er. Much fear. Im not feeling well these days, so i'll be quick.

Last jan, i read from macks mom about the mcad, and i kept reading about it, and more and more, i knew inside i had it. So, i done what macks mom suggested, taking an h1 and h2 med combo, early in the morning for me. I was so bad off that i had to start on doxepin, which is one, if not the, strongest h1/h2 meds out there. However, i cannot tolerate any type of meds along those lines (trycylclics, ssris, snris, etc) .... as they really make me sick physically and mentally. But, i was able to tolerate the doxepin for 5 weeks and it seemed that it helped so much and at least gave me the edge i needed, and then resumed back to the zantac and zyrtec that macks mom suggested.

It did not hit me till now, till this post (even though ive searched for an answer on here and even posted with no real reply, about the breathing issue, as it was number 2 on my symptom list...... it could easily have been number 1, right along side my severe 24/7 exhaustion. Any ways..... it just hit me..... that since i've been taking the h1 and h2 combo early am, that i put it together that i have no had the breathing probs for the first time in almost 9 years!!!!!! So, my breathing has so very very much improved since i started taking the h1 and h2..... and I DID NOT 'GET IT' TILL NOW!!!!! (i was actually thinking the other week, 'ya know, i dont have that breathing prob anymore and havent had it in many many months now'.... and then i read this and thought...... 'omg! the breathing prob subsided once i was on the h1 & h2 med combo for a few weeks)..... wow..... you guys have no idea how excited i got to figure that one out!!!! Thank you Rich and macks mom for posting this, as it has helped me put a few things together.

I have also noticed, since taking the h1 and h2 combo, that i no longer urinate up to 40 times a day. I have small bouts of it, but before it was all day everday for 9 years. I'm not sure if the mcad meds have helped this for me..... but it coincides with when the breathing probs subsided.

Thank you all for this post.... im so glad rich that you posted it the way you did to get responses.... as i never could get response or find a post about the major breathing issues. And thank you macks mom for posting to this as well cuz you just put two and two together for me and i am so thrilled to understand what was causing my breathing issues.

Mack's mom, do you know if the mcad would have caused the constant urination?

thanks so much again for this post..... i direly needed it..... and wow, how good it feels to piece things together.....

god bless

tennille

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IM SORRY, I KEPT CALLING YOU RICK AND I MEANT RICH....... SO SORRY...... IT'S BEEN DIFFICULT..... PLEASE OVERLOOK MY MISHAPS :(

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Hi, Rich.

I've had extrinsic/intrinsic asthma (now COPD on CXR) all my life (non-smoker). I was diagnosed with POTS and later orthostatic hypotension with ANS failing me.

After major surgery in 2007, over the course of the summer, I was just feeling like I wasn't getting in a good full breath, but attributed it to taking longer to recoup from surgery. I'd mentioned it to my PCP at my follow-up visit that Sept. who ordered PFS that showed my asthma was out of control. (Wasn't wheezing or bronchospasms or anything). PCP started me back on Singulair and sent me to pulmonologist. Pulmonologist added Prilosec OTC for the GERD that can induce asthma and Spiiriva (I think--there were so many). I already used Pro-Air as rescue inhaler (rarely needed). Later pulm. added Foradil that I could not tolerate at all--made me have cotton mouth and very hard to manage secretions, very drying. I changed pulms when he wouldn't listen to me about the Foradil and took myself off of it in the meantime. New pulm put me on pulmacort and eventually we weaned the Spiriva. I have tried Allegra, Zyrtec, Claritan, Alavert for allergies. These do nothing for my allergy symptoms. Benedryl helps but it makes me drowsy. I'd also tried all the Nasocort, Nasonex, Astelin, a RX nasal spray the started with 'F' whose name excapes me and all those either caused headache/sore throat/nose bleed and/or combination of any of above.

Recently when I had to cut back on Prilosec OTC from 2 times daily to 1/day due to other meds all absorbed in liver, PCP did add Zantac at bedtime that also has antihistamine.

I have same problem--was biking 10 miles/day even in cold wearing Under Armor until I got these legs (hypotonia) that felt like lead on the bike and the leaning forward/dismounting and walking bike uphill of drive would put me into near syncope/tachy. I went on to treadmill with varying programs but it's in solarium--really cold even with warming space up with space heater and I'd wear flannel lined wind breaker and gloves to start but would be peeling those off and tossing on floor soon into the walk but with weak legs was afraid to 'let go' of the machine while walking. My cardiac specialist ordered aquaciser treadmill to strengthen muscles/vessels in legs and build endurance and recumbent stationary bike. My SOB seems mostly when I am nearing a near syncope. I use rescue inhaler before exercise if I notice that I'm seeming SOB. And for me, Nov thru Apr seem to be harder mos. on my breathing so I use my pulmacort during those months.

When I feel like I can't breath or am someplace where I feel a syncope coming, I rush out into the cold air too. Maybe if you are SOB so much its time for another check on the pulmonary function studies. If you exercise or go out where it is cold, it is good to drink cold water right before you go outside to help pre-prepare your lungs, too.

I pool blood and fluid in my legs, leaving the heart with 1/3 less blood to circulate and the blood that isn't getting back to the heart and lungs is not re-oxegenating well which might be why we get SOB.

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The hyperventilation is involuntary and evidence suggests that it relates to an oversensitivity to blood flow changes during postural changes.

I get breathless sometimes lying down and I have no idea why - I assume its similar.

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Its interesting that everyone seemed to ignore the only two research studies conducting on breathlessness in POTS. As Ive said previously it relates to sympathetic sensitisation and chemoreceptors. Patients with SOB tend to have pretty high tachycardia and even hypocapnia from involuntary hyperventilation.

While it's interesting the 2 research studies found that patients with SOB tend to have high tachycardia, when I have shortness of breath it is not related to high tachycardia.

My doctor thought it was tachycardia causing SOB and prescribed valium to reduce my resting heart rate. Valium reduced my resting heart rate from 85 to 70, I got even worse shortness of breath, and nearly passed out! He then realised my SOB had nothing to do with tachycardia.

When I have had episodes of very fast resting HR I have ALSO felt short of breath. But the SOB I am talking about that happens normally and on a daily basis for me is something completely different to the type that is related to high tachycardia.

Lotus, be very careful in taking sedatives like Valium, they relax us and our anxiety but they can relax us too much and we can get a side effect called respiratory depression (hypoventilation) If we had hyperventilation like some research suggests hypoventilation might actually help but as you noted it doesn't..

Have you tried beta-blockers to slow your heart yet? I haven't out of fear I also have asthma...

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Time for an update: My High Resolution CT scan came back normal so I have no lung scarring, phew! I also had a VQ/Perfusion Lung Scan, which checks for clots and that came back normal too. I'm a little disappointed that the VQ/Perfusion wasn't done in stand position as well to see the difference...

I had my POTS cardio doc check do 2 echocardiograms, one laying flat (the normal way) and one tilted upright. My pulmonary pressure was normal 30 and on tilt is went down to 18. A Harvard specialist told me that's very normal. I'm scheduled to see one of the best Pulmonary Hypertension/cardiologist in the country, in March. I'm probably going to get a right heart catheter and be tested during exercise and standing. The only thing the echo found was I had a pericardial effusion. I looked it up and it can cause some major breathing issues. Only thing is I had an echo in the hospital 2 months prior and dint have that, so I dont think that's the issue, but the specialist can check it again.

I have been paying closer attention to what my breathing problem feels like. It feels like a balloon is inflating under my sternum creating pressure.

I'm looking into unilateral pulmonary hypoperfusion as the cause since so much blood augments way from our thorax area.

I'm still on prednisone 10 mg so I haven't done a PFT, but i have one scheduled next week and then the week after a cardio pulmonary exercise test.

I got a new apartment in hopefully this new environment will help after 1 or 2 months because my POTS flare was triggered by my old one, I think..

Also I'm wondering if my pressure feeling is related to deep mucus and is some kid of response to dehydration and pooling...

Rich

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I've had asthma and allergy problems for 26 years, developed after I had a child, but never had this in childhood. I was so sick when I was first diagnosed, I needed a prednisone injection, epinephrine, was on 5 medications including 2 inhalers, and was put on desensitization shots for 4 years, twice a week. I weaned myself off of all meds except an inhaler in 6 months. I get flares on occasion during the spring and fall with respiratory infections. In 2004 I coughed up about 1/4 cup of blood,( 2 mouth fulls), and after a chest xray and lung scan in the ER, they told me I had a mass and to go to a pulmonologist. I went thinking I had TB, and he told me I had bronchitis (I wasn't sick or wheezing at all)!! Right then, I knew this was not normal, along with all my other strange happenings over the years, but other than feeling fatigued, I seemed ok.

Since my dysautonomia diagnosis (Pure Autonomic Failure), I also went to a sleep apnea clinic (30% of people with this disorder have this), because of my inability to sleep, which I thought was because of my tachycardia, but it was more. My O2 saturation is fine, but I had 15 apnea episodes, 64 hypopneas and 92 arousals in one night. I hadn't slept properly in 3 years, and it was taking a toll on my health in general; I lost 10 # without trying. I now sleep with a Cpap and clonazepam, and I'm much better. I do have SOB on occasion lying down or sitting at a funny angle, and if I overexert myself. I find myself holding my breath on occasion, too, ( for no apparent reason, and having to remind myself to breathe), but I do exercise on the elliptical, and I believe singing is imperative for me. It strengthens my lung muscles; I used to play the flute, as well.

I was tested for acetylcholine receptor antibodies, because I sometimes have droopy eye lids, and I thought I might have Myasthenia, but I don't. I would like to be tested for certain proteins for mast cell production, but haven't done that yet.

No one has mentioned cardioselective beta blockers. I am on Bystolic, and I am amazed at the difference it has made with my tachycardia. I don't find that I have any more shortness of breath, because of it, but it is a long acting and new beta blocker that works very well for me. I still have erratic heart rate at times, but I'm not as tremulous, which was a major problem for me. I thought I was exhibiting symptoms of Parkinson's Disease or Shy Drager, and that worried me, but after going to my neurologist, I was assured that I have no more chance of having Parkinson's than the rest of the population. I have hyperreflexia, too, more on my left side. I have another appointment with him in another month.

I am having a major GI flare right now. I am in constant pain. I'm going to take some of my smooth muscle relaxer this morning, because I can't stand it anymore! My son's getting married next week, I'm so very excited, so I'm under more stress than usual! That's probably what it is. We have to travel 7 hours there, and I always get dizzy in the car!! I'm praying that I will NOT be sick :wacko: Thanks for all the wealth of information...

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The cause of your SOB could be muscular in origin. Since acetylcholine plays such an important role in POTS and seem to be in the low end for the most part. This could be preventing your respiratory muscles from contracting efficiently enough to fully expand your lungs. Is that what it feel like ? Like you can't expand your lungs fully. I have this same problem and after a thorough evalution by the pneumologist, he suggested the problem could be muscular in origin. He found nothing wrong with my lungs and could be seen or measured. Does using mestinon help with sob ?

Mestinon didnt help at all

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Also never made it to the exercise pulmonary catheter testing. My guess is I loose blood pressure in my, lung, I dont gain it. Unless I have some kind of pressure from a hiatal hernia...

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A few years ago I was experiencing great breathing and respiratory problems. My GP Dx'd me w/ asthma and prescribed an albuterol inhaler. It seemed to help briefly when first used but the relief was VERY temporary.

Finally after seeing an allergy and asthma specialist I was tested and was told I didn't have asthma (fyi, one of the important lessons that I've learned in all of this is that asthma is not a clinical diagnosis; it is a based on a specific test and a specific breath pattern.) (If I recall this correctly, asthma is not an "inspiratory problem, it's an expiratory issue".) My issues were with the inhale, not the exhale.....

(In short, the albuterol was probably making the matters worse, including my POTS, and not better in net.)

Fast forward: allergy and asthma guy suspected that I was experiencing "vocal chord dysfunction" which is sometimes seen with dysautonomia. And referred me to an ENT who specializes in such.

The ENT explained in a person whose system is generally "twitchy," the vocal chords will be especially sensitive and tense up and make it difficult to breath. It then becomes a vicious cycle once the vocal chord closes the airway.

Through coaching and some simple exercises I learned how to breath through such situations (for me some of my triggers are: heat/humidity, "environmental allergens", like heavy perfumes, cigarette smoke, smoke, etc. make breathing more difficult.) I now always sleep with a ceiling fan to better avoid this issue throughout the night.

Here's a link on VCD:

http://www.nationaljewish.org/healthinfo/conditions/vcd/

Good luck to everyone and I hope that you find the answers that you need for your body.

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