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Do you have a pulse ox meter? What are your numbers? Have you had pulmonary functions test? If you aren't getting low numbers, I am told O2 won't help. It is a problem with the blood carrying the O2 to the organs fast enough.

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My daughters get really lightheaded when they talk too much.  They can't do long phone conversations or especially standing up in one spot and talking to someone.  Talking in general for them is exhausting.

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Does anyone know if there's a test    to not measure your oxygen in your fingertip but to measure if your head and heart are getting enough oxygen? I had a pulse oxometer put on my finger while I was standing and my oxygen was normal, but according to Dr Grubb it's not just your feet and calves in which blood pools when you're upright, but your hand and forearms, so no wonder my finger tip had enough oxygen! 

Im very curious about extra oxygen and oxygen machines too, as I'm often short of breath. I'd love to hear more thoughts or people who tried oxygen and if it helped or not. I also got out of breath when talking, especially if I have to talk loud, like in a train or a restaurant or most public places. Sometimes I'm just too short of breath to even talk, and I rarely have the energy to sing a song anymore like I used to like to. 

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Shortness of breath while talking is a common symptom.

dysautonomia means that not enough blood is getting to your brain especially when in an upright position.  Many of us have pooling which means blood collects in the legs. I  am not aware of any way to test the blood flow to the brain. 

Most doctors treat the blood flow problem by trying to increase either blood pressure or blood volume. You can look on the diner page for the various treatments available. Sometimes people take oxygen but It seems less common.

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I believe a CTA ( CT scan of the blood vessels in the brain ) shows circulation of the brain as well as the cerebral circulatory system itself.  

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On 6/29/2018 at 7:16 AM, Pistol said:

I believe a CTA ( CT scan of the blood vessels in the brain ) shows circulation of the brain as well as the cerebral circulatory system itself.  

POTS patients usually have a normal CT scan l. It’s more like a picture of the brain. It can show that a stroke occurred but won’t show less oxygen is going to your brain because blood is is pooling in your legs.

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I am currently on oxgen due to a pulmonary embolism. At the time of diagnosis in May i could not say more than 4 words without taking a breath, was super annoying! Breathing a little better as time goes on but still desat if i take it off for a while. I have a lot going on so hard to say for sure but do think I'm seeing some benefit with my regular symptoms. Especially in area of cognitive function, fatigue and also maybe the length of syncopal episodes.

Something that can shed a little more light on true o2 saturation is an Arterial Blood Gas. I was on O2 a couple years ago and the pulmonologist who saw me said that because of my low bp a finger probe is essentially useless. He said that when we saw it read low it was a lack/loss of profusion and not a true low O2 sat so he ordered an ABG and had me stop the oxygen. Definitely saw a difference in symptoms that time around, especially stopping it. 

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5 hours ago, ANCY said:

I am currently on oxgen due to a pulmonary embolism. At the time of diagnosis in May i could not say more than 4 words without taking a breath, was super annoying! Breathing a little better as time goes on but still desat if i take it off for a while. I have a lot going on so hard to say for sure but do think I'm seeing some benefit with my regular symptoms. Especially in area of cognitive function, fatigue and also maybe the length of syncopal episodes.

Something that can shed a little more light on true o2 saturation is an Arterial Blood Gas. I was on O2 a couple years ago and the pulmonologist who saw me said that because of my low bp a finger probe is essentially useless. He said that when we saw it read low it was a lack/loss of profusion and not a true low O2 sat so he ordered an ABG and had me stop the oxygen. Definitely saw a difference in symptoms that time around, especially stopping it. 

Ancy, be careful if your PE symptoms last for a long time. There is a condition called chronic thromboembolic pulmonary hypertension where the original blood clots do not dissolve properly with blood thinners. They instead turn into hard calcified clots in the lungs and shortness of breath and PE symptoms never go away. They can check for this by doing an echo of heart to see if there are any signs of pulmonary hypertension or  VQ scan to check for old chronic blood clots. I still have an enlarged heart from my PE's and I had them almost seven years ago. Those things do a lot of damage. I hope you feel better soon. 

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I had this symptom, along with the feeling my lungs didnt work automatically and I would forget to breathe from the day they put me on beta blockers. The hospital SATS showed my blood oxygen to be 87%. I bought my own oximeter that records overnight and that showed I would spend long periods at 85% when asleep.

They took me off beta blockers after a couple of months due to how ill they were making me, but the symptoms remained, it is why I am here, they have given me "Autonomic Instability"

The good news is, 13 months after stopping the beta blockers, the breathlessness and running out of breath when talking, seem to have suddenly gotten better on their own, my blood oxygen is now always in the low 90s as well. 

I am hoping my body is gradually re-setting its ANS after the damage beta blockers did to it, still a few other symptoms to go though.

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