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POTS or something else?


danelle
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Hi,

Just wondering if everyone(or most) have BAD problems with breathing-shortness of breath, difficulty breathing, etc with your POTS. The main time I have problems is when I do the least little bit of activity, and I mean walking across the room can really set it off. Any type of activity makes it so hard for me to breath. :D

I am beginning to wonder if I have CHF(congestive heart failure)-I don't think I do but I just don't know. I have never smoked so that isn't it either. It isn't like asthma but someting is definately going on. IT isn't new but just getting a little worse. I have mentioned it to the Dr but we haven't really focused on it at this point.

Is this the norm for POTS?

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I have problems "catching" my breath when I get more tachycardic, but it's b/c of the high heart rate rather than an actual breathing problem per se. I also had one time several years ago when I was hospitalized with a heart rate steadily in the thirties & my breathing wasn't tip top then ( I was on oxygen for a few days.) Most recently, I started a cardiac rehab program last week & am having major issues feeling out-of-breath when trying to do even a few minutes of really low-key cardio, although my pulse ox is in fact okay...I'm thinking that is b/c of the beta blocker which is a new addition for me about a month ago but who knows.

So...I don't have much wisdom to offer but often my breathing "feels" bad when my heart rate is at either extreme. Ultimately though my lungs & respiration themselves are totally healthy aside from allergies/congestion. Do you actually feel that you have trouble getting air in your lungs? Can you tell the difference between whether the problem is in your lungs or b/c of other more systemic things? My issues have always been part of a package, not even on their own...

Hope you get some answers soon!

:-)melissa

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I experience this type of thing as well when my heart rate is too high and bp too low. sometimes get too breathless to even talk. Maybe have your doc order a pulmonary function test to make sure everything is okay and rule out asthma etc. good luck

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Danelle,

I post on this topic a lot but just wanted to reiterate that my worst POTS problem is shortness of breath, and that my echocardiograms are totally normal, plus my pulmonary function tests are nearly normal (just mildly off but not enough to cause any breathing difficulty-type symptoms, my doc says). Yet, I have been short of breath since my POTS began, and it has yet to go away even for a minute. I feel like I am breathing through a straw, and at the same time that I have forgotten how to breathe. I always have a general feeling of tightness in my chest as well that is hard to describe.

I get a little better when lying flat, and also get worse with activity. I push through it and hope it will lift someday. But I realize it also may just always be there. I deal with it through yoga, meditation and trying not to think about it.

Congestive heart failure often causes an increase in your heart rate (beyond what is your "normal"), a dry cough that worsens when you lie flat and swelling in your legs. My dad suffered from this condition for several years and he had all of these signs. Some people may have fewer. See your cardio if you feel unsure, but I would bet that you don't have congestive heart failure.

Do you exercise at all? Is it possible it's getting worse because you can't do any activity? If that's the case, I would ask for cardiac rehab or PT so you can be observed while trying to get fit. My cardiologist and psychiatrist both say staying in shape is important in protecting your heart from disease and often reduces autonomic sensitivity (i.e., panic attacks, irritable bowel issues, depression, anxiety, etc.)

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I have this problem regardless of what my HR is. I can NOT lay flat at night, I need 2-4 pillows but have no swelling or cough. Like I said this has been going on for years but is getting to be a real nuissance. :unsure: -My dad had CHF too-part of the reason he passed.

No, I can not exercise AT ALL. I have tried a cardiac rehab program and while all the people in their 70-90's would do fine, I would do horrible. I couldn't keep it up.. Even when I try doing sit ups, crunches, leg lifts-even just 10-I end up with arrythmias that drive me crazy and tachy plus the difficulty breathing.

I feel like I am a hopeless case. I guess it could be my BB but I am on only a beta selective blocker which is less likely to affect your breathing as others (I am on atenolol).

It doesn't sound like many of you have the breathing problems that I have (other than Calypso) so who knows what the heck it is, I am just falling apart I guess. :P

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Danelle,

please, NEVER think of yourself as a hopeless case. There's always hope. Like you I can't exercise. I couldn't do the cardiac program. Now I'm in my chair and exercising my feet! My chair is in the sun of course (as I'm a cold POTSy).

I'm only having breathing problems when it's very humid.

Maybe it's a good idea to let your doctor check on you. Tell him you're worried and that your dad had CHF. Your doctor should help you out so that you can solve the problem or live with it, without having to worry about it.

Take care Danelle, (hope your son is doing well!)

Corina

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Guest Mary from OH

Danelle,

Don't just sit and worry!! I know you do that!! Call your dr and get an ECHO done. Even your primary care can order one. Explain about the breathing problems and your dad, etc. It will ease your mind.

Also, I have breathing problems whenever I climb stairs. I feel like my heart will pound out of my chest and it takes me quite a while to catch my breath. I feel like I'm about 75 years old.

Give Derrick a hug from us. Try not to worry too much and just DO something positive about it. Call one of your drs and get it checked out so you don't just think about it and worry. OK?

Love you!!

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