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Godsgal

Hard Time Breathing

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Hello dinet support group,

I am getting these labored breathing episodes and they are terrible. I feel like it's hard to take a breath, like it's labored. I'm just sitting here and they normally last for a couple of hours. I feel like I'm not getting enough oxygen. It's usually in the afternoon/evening and it's brought on by physical activity like walking to the pantry for a snack too many times or excessive talking (believe it or not!). Reading a book to my 3 year old will bring it on too. I've been diagnosed with POTS and dysautonomia. I suspect MCAD as well. They are still looking into what else is going on with me. My blood pressure is usually around 130/100 (high for me) and heart rate seems to jump around during these episodes but is usually lower like in the 50's to 70's. It's like I can feel my heart start slowing down during that time and my bp usually goes up. Not being able to breathe correctly is just torturous. Does anyone else get this?? Is this a POTS issue or a dysautonomia thing?

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I did in the beginning but it improved for the most part over time.

I agree it's horrible.

I only get it periodically now.

I did not have any treatment for mine but that really doesn't mean anything.

Be sure and mention it to your doctor and see if they can help you at all with this.

The bp going up when the heart rate goes down is normal.

The bp and pulse usually do a balancing act.

When you have a high heart rate you might see a lower bp and vice versa.

This isn't always the case though.

Make sure you report all of these findings to your doctor or POTS specialist. :)

Hang in there!

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I recommend you see a pulmonologist. I always chalked those spells down to MCAD, but it could be something serious. I am seeing one for the first time on 2/11.

I use daily singulair & occasionally atrovent via a nebulizer. Both seem to help.

Sorry you feel badly-

Julie

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I had a lung funtion test and 2 chest x-rays done, all with normal results in December so I'm hoping it wouldn't be anything more serious.

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That's exactly how I felt last summer - I remember clearly having to stop reading a bedtime story to my son because just reading started it all up. I don't know what exactly it is, but I have been attributing it to MCAD too, and now that I am on the MCAD meds am doing much better overall. In flare up situations, Benadryl helps me with the breathing.

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As far as I know I have no reason to suspect MCAD, but have POTS (am 21 and otherwise very healthy, with some fibro symptoms-- been tested for everything under the sun practically). I get this frequently. I am having it right now. My cardio says it is a POTS thing, and he is very good about investigating symptoms that could have other causes.

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I've had it too. Had it for months and then it got better and now it flares up at various times. Have been put on various inhalers and singulair which I thought were helping but once I stopped them, and then tried to restart them when the symptoms flared again, it didn't seem like the meds helped much.

I still think there has to be some connection with the POTS and breathing issues including hyperventilation and odd CO2 levels. Hope they figure it out soon!

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I was getting this extremely severe constantly for months at my worst. I still get it quite often. I do notice though that if I eat lots of potassium containing foods, apricots, bananas etc it actually feels quite a bit better. You might want to get your levels checked and eat a banana everyday at the very least.

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That actually sounds like asthma. That's how it feels when I have an asthma attack. Like you just can't get your breath. Even when you take a deep breath your still not getting that much air. I would see a pulmonary dr and have them test you for ashthma. The POTs like symptoms I get feel like my chest being squeezed and like I've lost my breath, but the not being able to breathe is an asthma attack. When I've been on beta blockers I have had asthma flairs that lasted hours. After that my lungs got so bad it took 2 months to clear up.

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Chaos,

I was going to mention that if you try to use inhalers after there is a problem, it takes a long time for them to work. They are preventative, and they can help, but not automatically after a flair. They just don't have that capability.

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