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I just returned from the Vanderbilt Autonomic Dysfunction Center. I saw Dr. Satish Raj. I have POTS. I cannot take beta blockers due to asthma symptoms.....I am now having alot of breathing difficulty and I am NOT on a beta blocker. Could this be mast cell activation ????? If yes, how do they treat this? Carol :o

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I just returned from the Vanderbilt Autonomic Dysfunction Center. I saw Dr. Satish Raj. I have POTS. I cannot take beta blockers due to asthma symptoms.....I am now having alot of breathing difficulty and I am NOT on a beta blocker. Could this be mast cell activation ????? If yes, how do they treat this? Carol :)

Hi Carol,

Could be MCAD. The best place to start would be to take a test to formally DX asthma. I forgot the name of mine (spirometry?), but I did a series of breathing maneuvers- breathing in and out for long periods (monitored by a computer.) Then, I was administered albuterol via a nebulizer and re-tested. If you have asthma, you should show a marked improvement after the albuterol administration. My re-test was actually worse. My breathing showed moderate blockage that was not reversable.

Folks with MCAD can also have formal asthma and allergies. Many do not and just have the symptoms of one or both. Search the archives and read all you can about MCAD.

I treat mine with daily 300mg ranitidine, 10mg zyrtec, 10mg singulair, 81mg aspirin, 25mg atarax, pataday (eye drops), atrovent (via nebulizer) and epi-pen as needed. Some patients additionally need mast cell stabilizers like gastrocrom. Others need short term doses of steroids to stabilize.

Best of luck-

Julie

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  • 1 month later...

Hi ladies, :lol:;)

I was formally dx with asthma over 15 years ago, then re dx with exercised induced asthma years later. Then with high blood pressure and high heart rate 2 years ago and put on a beta blocker that nearly killed me. I was already on allergy meds and inhalers. Then put on nebulizer treatments 3 times a day. My heart was out of control as first it was atenenol making me so sick and then put on a beta blocker. Even making me break out in eczema. Allergic to all. My doc apologized, as she said she should have noticed the symptoms as me being allergic. We stopped everything and sent me to another Doc.

I just thought it was another allergy doc, till I read his card. He was an intensive care plummy care doc and sleep disorder doc. Well good I needed help in that area also. He sent me for those tests julie described. I flunked them the first round, but the tech made me retake them till I passed. I didn't quite understand that part, as I nearly passed out just walking to the appointment. Some man in the elevator asked me if I was OK? When I walk any distance breathing became a real problem. I'm a looker to all around. ;) .

Once the results were done, I had to walk back to see the doctor. He looked at the results and said, "you don't have asthma." I don't think you ever did." Oh Crap I'm thinking, then why does my chest hurt when I breathe and I'm gasping for air when I walk. The next test he sent me for was an echo cardiogram, and it came back showing I had a stiff heart or diostolic dysfunction among a few other things I didn't quite understand. Luckily that was the day he said, I can't let you leave without having you see a cardio."

"I said good, my PC wanted me to have one anyway." That was the day he gave me two names and steered me towards the wonderful one I have today. The man who listened to me and dx my POTS. I also passed it by my PC and she said that's who she would have sent me to. :)

I'll have to look into this mast cell activation, as I don't know when I had the antibodies for allergies done it was off the charts. Interesting conversation so looks like I have some work to do.

Good Luck~

I'm so tired. :( ~BellaMia~

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I was diagnosed and treated (wrongly) with asthma for 12 years. I also did the pulmonary function test recently and it was found that I did NOT have asthma! ;)

You can not have asthma and it still be hard to breathe, when I did my cardiac stress test I found out why: when I walk, my HR goes up to 180 bpm---that is 3 times a second! No wonder it is hard to breathe! When this happens, or with any other POTS trigger, I'll also flush. Depending on how hard I flush and what I was doing, I can also feel me throat "tightening" and I'll feel like I'm wheezing. I am suspected to have MCAD. I too am on Allegra, Singulair and Zantac. I finished my 4 hour urine Methylhistamine test and should have the results soon.

If you have a HR monitor (like the ones athletes use--chest strap and watch) find the point where it becomes difficult to breathe: mine is a HR of 140bpm.

Good luck!

Jennifer

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I was diagnosed and treated (wrongly) with asthma for 12 years. I also did the pulmonary function test recently and it was found that I did NOT have asthma! ;)

You can not have asthma and it still be hard to breathe, when I did my cardiac stress test I found out why: when I walk, my HR goes up to 180 bpm---that is 3 times a second! No wonder it is hard to breathe! When this happens, or with any other POTS trigger, I'll also flush. Depending on how hard I flush and what I was doing, I can also feel me throat "tightening" and I'll feel like I'm wheezing. I am suspected to have MCAD. I too am on Allegra, Singulair and Zantac. I finished my 4 hour urine Methylhistamine test and should have the results soon.

If you have a HR monitor (like the ones athletes use--chest strap and watch) find the point where it becomes difficult to breathe: mine is a HR of 140bpm.

Good luck!

Jennifer

Thanks Jennifer for the information. I'm going to my pots specialist this week and maybe she can help me sort some of this out. I feel like my throat is tightening up a lot and heart rate reaches 171 at least when I'm able to reach my BP machine. I need to buy that watch people were talking about a while back on amazon. Thanks you are a wealth of information.

Blessings and Love~

BellaMia~

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