Is this POTS or an irregular breathing disorder?

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Sorry for the long post but the last 12 months have been a bit complex.

I am a 43 year old Lady with chronic migraines (controlled with a spinal implant) Asthma, and low blood pressure around 95/56 is usual for me.

Im now at a point where I am being referred to a pulmonary rehab clinic for a condition I don’t think I have, I feel frustrated and am beginning to doubt myself but I don’t feel as though I can tell the cardiologist he is wrong as he is very highly thought of. I am not saying I have POTS and I honestly don’t know what is wrong with me but please can you spare the time to read my case and if possible offer me some advice. Thank you.

12 months ago I had a flare up of Asthma, after 3 weeks of struggling I admitted defeat and went into hospital where I had another course of anti biotics as my white count was raised. What I couldn’t understand was why I was ok all night lying down but as soon as I got out of bed in a morning my breathing got worse. I kept telling doctors that my breathing didn’t feel Asthma related anymore but they just kept giving me high dose steroids and nebulisers for 10 days until I went home. Whilst in hospital I came into contact with a covid patient and was moved into isolation but the day I came home I got a call to say I had tested positive for Coid but fortunately I only lost my taste and smell.

I was referred for tests including a lung function test and pulmonary angiogram which results showed I did have Asthma but my lungs were as strong as a non asthmatic but I was still symptomatic. I had an oximeter at home and I was checking my oxygen levels and walked into the kitchen when I noticed a spike in my heart rate. My heart rate was never mentioned in hospital but I would have been lying down every time they took it so I brought I fitbit to track it behind the scenes

The results of the pulmonary angiogram highlighted a couple of concerns so I was referred to Cardiology due to me having a significant family history of heart disease who sent me for more tests.

The results of a CT Angiogram shows I have Coronary Archery Disease, a small part of the wall of my heart has died but he doesn’t know why and I cant have an MRI due to the spinal implant and also my heart isn’t pumping very well but I don’t have heart failure yet.

The exercise tolerance showed that I was hyperventilating slightly but I think that this was due to having a large mask over my face which I don’t tolerate well.

The tilt test I don’t think the readings are 100% accurate as I had a mask on but the results were After rest of 5 mins heart rate of 92, Immediate standing heart rate 144, 30 seconds heart rate of 129 and 120 seconds 122 after that it stabalised at 118

The cardiologist has said my heart abnormalities are not causing my breathing, he has also said it isn’t POTS but I have hyperventilation disordered breathing based on my exercise test but this does not seem logical to me. I have researched the hyperventilation and it says that you have fast shallow breathing, my breathing isn’t fast or shallow, my husband says it is at a normal rate I just look exhausted trying to breath also instead of oxygen levels increasing with fast breathing my oxygen levels drop slightly. I asked why my heart keeps racing but he shrugged and just told me to take the fitbit off !!

Current symptoms

Mornings I struggle to breath and have an increased heart rate although some days days I am ok.

I go walking (about half a mile) on the flat which increases my heart rate to about 170 bpm and I am unable to talk whilst walking as I am too breathless

On the other hand I can tolerate my electric bike and my heart rate only goes upto 140/150 bpm and im not too breathless and appear to cope better with this exercise

Weirdly my heart rate goes up to 150bpm in the shower

It seems the longer I stand up the more breathless I am, and I struggle to have a conversation standing up

Evenings are the worst for me, after tea I sit down and struggle to breath unless I lie flat where I feel like I have a new set of lungs, my oxygen levels do drop slightly to 94/95%

I feel exhausted, its not just a bit tired its like a wave that comes over me

If I stoop down and then stand too quickly everything goes black for a min or 2 but this is usual for me due to low blood pressure

My resting heart rate according to my fit bit is around 70 but its very rare it goes below 100 when standing

I am no longer able to sleep on my left hand side or front as I wake up gasping for breath.

Other things which Im not sure if relevant, I get intermittent diarrhea with no other symptoms, my monthly cycle is all over the place but not sure if that is menopausal and I have trouble concentrating and headaches although this could be related to my long term migraines.

I would say that my condition has improved slightly since I have been exercising on my bike and I can have a few days where I get less issues with my breathing (although heart rate still spikes) but then I can wake up the next day and have a really bad day.

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  • Edited

    not sure if this has come through but this is a typical reading on my fitbit on a day I was pottering round the home


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