Difficulty breathing and a burning chest

[Frank]

Hello Everyone,

My wife, Christine, is worried since breathing is becoming more of an issue for her and because she feels burning in her chest. Her Echocardiogram though came back normal.

It tore at my heart last week to see her struggle for a minute or two to get some air. She couldn't even talk, and she had this panicked/distressed look. She didn't pass out or turn blue, but that was small comfort.

Does anyone have experience with sort of thing and what can be done about it? My wife is loquacious, but now she often has me speak on the phone for her.

Frank

[blackwolf]

Dear Frank and Christine,

This is one of my worst problems and one of the most undertreated.

The pain and agony of just breathing is nasty, nasty business. I reciently started neurontin and this has helped take the edge off the pain, thou I still have flare ups(like the last few days). I also do deep breathing excercises about 10 times a day-don't get me wrong, they are NOT comfortable, but they do help. I take 3-5 breaths,deep as I can, hold for a few seconds and release, all done slowly. Another chest stretch I do is, with your arm straigt out, reach across your chest and hold for a few seconds.

As to the shortness of breath(sob), it is a common problem. I almost feel like I'm choking and have to "gulp" a few times before catching my breath. One of the things I have found out is that I will not die from the experance, but it is one of the most frightening things to go through. The panic is natural and for me, now expected.

Has her doc said anything, or is it the old "you just have some anxiety" type of thing. Has she seen a respiratory therapist, they can teach her how to handle those monents when it happens and how to avoid them if possible. there may be some type of spasm going on, and a possible swallow study may help to identify it.

That is all I can think of. Please remember, she is not alone and there are more out there how understand.

PS-please ignor my typing, I'm just to worn out to correct today.

blackwolf

[morgan617]

I note that if I talk on the phone for very long, or carry on a conversation, I just get confused, short of breath and feel basically rotten. I'm not sure if it takes more oxygen and I'm getting less to my brain or what. I also get sighing hyperventilation where it feels like you just can't get quite enough air and then you do and then it starts over. I hate that so much. It causes my chest to hurt and even my ribs will feel bruised. I usually only have it on beta blockers, but lately have had it a few times for no apparent reason. It is very scary to feel like you aren't getting enough air. Tell Christine it's just another lovely aspect of this condition and as time goes on, we just learn to cope with a lot of this stuff. It may not get a lot better, but she will learn not to get so panicked by it. morgan

[LindaJoy]

Hi, Frank and Christine,

I too have problems getting breath at times. I feel like I have to actually think about breathing to make myself do it. Does Christine notice, during these times, that she has other symptoms of her POTS, such as sweating palms and feet, rapid heart rate, buzzing in her head, shaking? If she does, then she can be pretty sure that her lack of deep breaths is part of the POTS and that she doesn't have any lung diseases going on. Whenever I have the breathing problems, I do a self-analysis to see what else is going on with it. I usually find a few other POTS symptoms going on to assure myself that it's the POTS and it will soon pass. It's not pleasant--it's downright scary. I have a peak flow meter that I got from my asthma doctor (yes, I have asthma with POTS--a lovely combination). Whenever I feel short of breath, I take my peak flow test to see how my breathing is doing. When my numbers show normal, I'm assured that it's the POTS causing me some problems and it will be okay. I use the peak flow meter as more of a security blanket during these times, but it helps to ease my mind. Maybe Christine could look into getting one from your doctor, who can show her how to use it and when to be concerned.

As far as the burning in her chest, it could be from muscles, as POTS does affect the muscles, or it could be from indigestion. Has she been diagnosed with any type of upper g.i. problems? Has she tried something like Tums, Maalox or Mylanta? When in doubt, try antacids for this and see if they don't help the burning--but be careful as antacids can decrease the effectiveness of some medications. If the burning is helped, then you know it's some kind of upper g.i. stuff that's going on, which many people with POTS have, as well.

Hope this helps. POTS is not fun. It's a struggle, every day, to feel okay and to convince yourself that you're going to be okay. I feel for you, Christine, because I know exactly what you're going through. The other night, my first night alone since this latest POTS episode started over a month ago, I had the breathing problems, and I was terrified. I kept doing my peak flow meter, and it kept registering normal, so that was a little bit of comfort. Also, Christine, do you take anything like Xanax when you have major POTS symptoms? Xanax is for anxiety, but it really helps me when I go into POTS shaking and breathing problems, etc. It helps my muscles to relax, which helps my breathing, then helps other symptoms, as well.

Please take care, continue to know that we're here to talk to, that you're not alone in this, and let us know how you're doing.

With love, Linda

[Frank]

Dear blackwolf, morgan617, and LindaJoy,

I really appreciate your sharing your personal experiences. They set my mind a little more at ease to know that she won't ever stop breathing because of this.

Christine and I will see the pulmonary specialist at Froedert Hospital which is a teaching hospital on April 22nd. I'll let you all know how it goes.

Frank

[LindaJoy]

Glad we could help to put your mind at ease, Frank. Someone on one of these threads said, just the other day, I think, that even when you've had POTS for awhile, and you're actually used to the symptoms, when you get a bad spell, you actually feel as if it's your first, and you become just as scared as you did the first time. With Christine just learning what's going on with her body, it's understandable that she would be terrified when new symptoms appear, or when existing symptoms get worse. It's great that you're seeing a specialist, to ease Christine's mind and to see if anything else is going on. Yes, please do let us know how she's doing. And, if you have any other questions, we're here.

Blessings to you both,

LindaJoy

[calypso]

Is this an intermittent symptom for Christine or is it fairly constant?

I have a constant inability to breathe normally since POTS hit me a year and a half ago. It is the worst symptom for me. I also get burning in my chest but it comes and goes.

Froedert is an excellent hospital, and if there's something wrong with her lungs, they'll likely find it. Please report back. Maybe there'll be some advice that would help people like me and Blackwolf!

Amy

[Frank]

Amy,

It's a consistent problem which gets worse the more she talks or the more she exerts herself.

We've had good experience with Froedert. Dr. Peltier my wife's neurologist, is very thorough. We'll see some other Froedert docs over the next few months (cardiologist, gastroenterologist, PCP, pain management specialist).

Frank