Breathlessness

[Sandra]

Hello

I get very breathless just doing normal everyday things. I can't walk and talk at the same time as I get out of breath, and as the weather has been getting warmer, I seem to be getting worse.

I don't have Asthma, but my son does, so I know all the symptoms. I am not wheezy, I don't have a cold or hayfever. I was getting so fed up with it, that I went to my GP's this morning. He did a Peak Flow reading on me, and it read 213, whereas for my age, weight and height, it's supposed to be 460. He has booked me in next week for a Spirometry Test. I'm not sure what that is, but it's probably something to do with breathing. I also had a chest x-ray this morning.

My GP said he thinks my breathlessness is caused by the beta-blocker I take - Sotalol.

Does anyone else share my problem, if so did changing beta-blockers help? I used to be on Propanolol, but that didn't stop my tachycardia. I was tried on Verapamil, but that gave me terrible headaches. Sotalol is the only one that seems to work for me. For example this morning when I first got up, I felt tachy, checked my heartrate and I was 147 beats per minute. Half an hour after I had my Sotalol, it had gone down to normal - 81 bpm.

He also said circulatory problems also cause breathlessness, I lifted up my trouser leg and showed him my lovely bluey/purpley mottled shins and calfs. "Wow" he said ( I could tell he was suitably impressed lol)

I am not due to see Prof Mathias up in London until October.

Do you find breathlessness goes with the territory?

Sandra

[Rachel]

Hi Sandra,

Yes, I've had problems with breathlessness ever since my POTS first flared up 12 years ago. Many others have the same problem. I've never found anything that helps other than pacing myself very carefully, but even that doesn't always work. Sometimes I have difficulty breathing when simply lying down. I can breathe normally but feel like I'm holding my breath.

I've had all of the tests run for asthma, used inhalers, etc. But none of that ever worked. Eventually (after a year of testing and treatment!) the doctors decided that I didn't have asthma and that the breathing difficulty was due to dysautonomia.

Rachel

Edited June 19, 2007 by Rachel

[Angelika_23]

Hello there,

Yes, I have the same problem. I have had all the asthma tests and they have come back normal, even though I end up in the ER after them. The doctors are blaming the breathing "problems" on "my condition".

It seems to go with the territory.

Sorry not much help,

Angela

[Lauren78]

Hi Sandra.

I too get breathless doing "simple" things. Housework, walking up stairs. Sometimes for no apparent reason it just seems hard to get a good breath. Exercise definitely does it. I had the peak flow done, failed it miserably too. I had spirometry done...similar thing. They have you blow into a device three separate times to measure lung capacity. It wouldn't even register because I couldn't blow long enough or hard enough. They never looked into it further, but it was just a GP. I have thought of seeing a pulmonologist just to make sure it isn't anything else. I know I don't have asthma. I figured maybe it was a POTS thing. I would be interested to find out how things go for you...

Lauren

[Sandra]

Thanks for your replies.

That's very intreresting to see that it's probably due to pots and not the medication, and that it's not just me who suffers from it.

I am very lucky, when I was diagnosed by Prof Mathias in London, although my GP had heard of Autonomic Dysfunction, he had never come across anyone with it. He told me that he had gone on a very steep learning curve with me, and he is learning new things about the condition all the time. He said that he has been reading up about it, as although I am under the care of Prof Mathias, ultimatly he is my family Doctor, and he is the first one I go to when things go wrong.

I know that you're right, and the tests will show I don't have Asthma. I will probably be the same about blowing, after three attempts at the peak flow monitor yesterday, only one was strong enough to show a reading.

I am going to print off your replies and take them with me when I see him again, which is after all the tests, on the 5th July, so he can see other pots sufferers are breathless too.

Sandra

[Tanzanite]

Mine is so bad that sometimes I feel I will die, I can barely get any oxygen. I also get it after doing things, it's usually delayed by a min or so. I get bad choking fits with the POTS and I end up gasping for breath after them too. I can get breathless for no reason/not doing anything too.

At my worst I was constantly breathless for months, was very scary.

I feel like I have several different breathing types. One where deep in my lungs I feel as if I'm breathing fast but I'm actually not. As if I've been running. I can feel slightly breathless.

Another, my lungs feel like they're stuck together and my chest feels like it has pressure on it and I have to make an effort to breathe.

Other types, just plain old gasping (and fast) trying to get some air in.

[Sandra]

Hello, just a quick update

This morning I had an appointment at the doctors for the results of my chest x-ray and my spirometery test. The x-ray was clear (I could have told him that, as I don't feel 'chesty') I don't have Asthma, Bronchitis or Emphysema, which I knew anyway. He said the results of the Spirometery showed I have the lung function of a 78 year old woman - I am 45.

He said it was more than likely the Sotalol I am taking that is causing my breathlessness, and combined with my condition and circulation problems he dosen't want to 'mess' with my medication. So he is going to get me an emergency appointment to see my Cardiologist at University College Hospital who Prof Mathias sent me to see when I was in the process of being diagnosed. Then she can decide to take me off, or change the beta-blocker.

I last saw her in November, and she was thinking about putting a pacemaker in me, but wanted to see how I go on the medication first. I was actually tried on the calcium channel blocker Verapermil, but that made me feel so awful, woozy, severe migraine's etc, that I was put back on Sotalol. I have also tried Propanolol, but I was still tachycardic on that.

Question - has anyone had a pacemaker put in to try to regulate their heart beat? if so, when you have a pacemaker fitted, does it mean you can come off of the beta-blocker?

Sandra