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Warning - Don't Assume Every Symptom Is From Pots!


lejones1
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I went to a new allergist yesterday to try to figure out my weird reactions to medications but while I was there he said he wanted to check my lung function as well, since I have a history of mild asthma. Well, turns out I actually have moderate to severe uncontrolled asthma and my lungs are only functioning at 60%! I'm 24 and have the lung capacity of a 69 year old.

I'm sharing this because it's honestly something I never would've thought of. I don't wheeze and I haven't had any acute attacks or used my rescue inhaler in over a year. But apparently a lot of symptoms I was attributing to POTS - periodic shortness of breath, waking up with tachycardia in the night - are probably actually from asthma. I responded well to a nebulizer so it shouldn't be too hard to manage, but I'm so glad I found out.

The doctor told me he thinks it's unfortunately pretty common among patients with complicated illnesses to miss the simple stuff - because we see so many specialists that attribute our symptoms to their speciality, and miss looking at the big picture. So this is just a reminder - make sure you get your symptoms thoroughly evaluated! Particularly shortness of breath, which I know is so common among us - if you had a history of any allergies, get checked for asthma, just in case.

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I'm happy this got caught! Is the allergist going to order a chest X-ray to make sure there isn't another possible explanation for your asthma?

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I'm not sure everything they look for, but I do think if your lungs are only operating at 60% it would make sense to ensure your lungs are okay. I do know a chest X-ray when someone is having trouble breathing could reveal scarring on the lungs, swollen lymph nodes pressing against lungs, and any masses that may be growing on the lungs.

I don't have asthma (or an abnormal chest xray) but for whatever reason the inhaler helps me breathe better too!

At Mayo Clinic, a chest X-ray is part of their autonomic clinic work up, I believe to rule out Sarcoidosis which often presents with enlarged lymph nodes in the chest.

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Thanks, Jackie, great info! I will have to call next week and ask him about it.

I think he was fairly comfortable with the diagnosis based on my history and because I had a very dramatic response to 10 minutes on a nebulizer - my lung capacity jumped to almost 90%. From what I understand, that usually only happens with asthma. So I'm hoping he's right! But definitely worth a confirmation.

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Yeah. Illnesses with an immune cause behind them (like POTS) shouldn't be used to explain away all your symptoms since other comorbid immune problems (autoimmunity like Sjorgens or histamine related illnesses like asthma) are more likely to exist if you've already got immune dysfuction. Anyway hope the nebuliser works well for you. Good luck.

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Glad you found this out. If you can get this under control, your POTS condition might improve rapidly. I would ask for some more testing. Have you been to a pulmonologist? This doctor deals with asthma and other lung diseases.

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Good luck! Do you have a peak flow meter at home? They're cheap and a good way to keep an eye on your asthma. Advair has worked well for me, as has montelukast.

(I've had chest x-rays and they're normal; they're easy enough to do and it doesn't hurt to get checked out. Asthma is fairly common and mine developed as an adult too.)

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About 7 years ago my pulminologist who is also an allergist ordered breathing tests for me in order to check on any lung damage. I have mild symptoms of asthma and need to use bricanyl but only very, very occasionally. The tests are performed in a breathing lab -- forget what the correct name of it is --, breathing into tubes and other things and takes about an hour. A number of different tests on different machines done by technicians. It's exhausting but it showed I have some minor damage to my lungs but nothing my pulminologist was worried about - she lowered the dose of the preventative asthma med I was taking at the time. I thought of it as the 'definitive' test in regards to my asthma.

Lejones, did you have any success in finding about your allergic responses to medications?

blue

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yes I totally agree!! I have been suffering with severe symptoms since last December that got so bad I literally could not use my leg muscles from weakness. Most of my specialists kept saying oh its from POTS and the mast cell illness but no matter the treatment I just kept getting worse. Finally one of my doctors decided to run a thyroid panel and lo and behold I was diagnosed with hyperthyroid.... my numbers were so high I was days away from a thyroid storm which could have killed me! I just found out last week that I have full blown Graves Disease :( so yes pay close attention to your symptoms and if they are not normal for your normal push to have tests...you know your body!!! :)

Bren

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Was it spirometry test? I had that done and nearly collapsed doing it as the more I did it the more breathless I got. It was eventually halted and I took some time to recover.

I seem to remember that name. There were a few different machines in the 'breathing lab'. This is about 7 plus years ago and my memory is sketchy. I'd been in hospital by then for at least a week so was well rested before the test but the technicians were really understanding. I think the machine my pulminologist/allergist has in her office may be called a spirometry. Whenever she tests me on it it's very uncomfortable. Have to do it twice. The energy and breath it takes to do the test is big.

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Hi Bren,

I just quickly looked up Graves Disease so I had some idea what it is. It seems to have so many symptoms .similar to POTS. It's lucky you, if not your docs, were on the ball. I'm thinking you are probably now on meds for it? Hope all goes well. A very good example of how we shouldn't assume everything is pots related.

blue

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  • 2 weeks later...

Well since my last post I have been told that the results of my CT scan show atelectasis (collapsed lung) in lower right and middle lobes and the lingular segment. So that's why my breathing is restricted. Now this can be a result of the neuromuscular problems with the nerve damage or caused by abdominal surgery of which I have had 5 since 1984. I have heard of people with ME getting collapsed lungs. This makes sense now. Looking back I noticed I was getting breathless from 2005-6 when the nerve problems started to kick in and I had surgery that same year.

So yes, I was surprised but at least I have proof that something was going on and it wasn't all in my mind.

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Thanks all for the well wishes :) so far treatment for the Graves has been a bit of a roller coaster and I have been feeling quite poorly but I am keeping positive :) Endo says it can take up to 18 months to stabilize and go into remission so here's hoping :)

Bren

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