I got this when I was on a high amount of Diamox (they were moving me up and up each week). I did end up at the local grocery store at the blood pressure machine because I was worried about that - and it was high for me - but the feeling would come and go during the day. It turned out that my electrolytes were low and I was going into acidosis because of too much Diamox. Had to cut back on Diamox and I have not had it since.

Strange you should post about this as I sit here having a bit of trouble breathing!
I am not on Diomax at the moment but this happens every once and awhile.
I would blame the fact that I still smoke but its not consistent.
I also have the most dreadful pain in my jaw,/throat. This also comes and goes.
I know that in part its from gritting my teeth when the pain is bad but this is kind of different.
Like you, I ve had all the cardiac tests done and I'm fine.

Can you think , does the breathing problem come along when your pain may be bad? How is your blood pressure?
My blood pressure goes sky high when my pain is bad which in turn would labour your breathing.
Cath

My blood pressure is always really good. Almost on the low side. I am one of the lucky ones that does not get the very severe headaches. And the diamox does pretty well at keeping my symptoms at bay. However, now that you've mentioned it, my pressure has been up the past few days. I've had a headache, neck pain, increased tinnitus and an overall foggy head. I also started feeling crummy with the chest heaviness, overall fatigue and breathing problems around the same time. I wonder if there is somehow a connection between elevated pressure and the breathing issues? Don't know how they could be related though.

I have had chest heaviness for the last three years, no clue why...had EKGs, sonograms, even after my surgery they said that my heart was perfect...sometimes, though, I have to take yawn in order to take a deep breath.

I have periods where I can't get enough oxygen and can't catch my breath. I can't climb a flight of stairs when that happens. I get it really bad when I slip into metabolic acidosis. I still get it sometimes when my CO2 and potassium are fine. It lasts anywhere to a few days to weeks.

I had no idea the diamox could do it to me. Or IH. I'm so grateful to you for posting this. My doctor said that "it must be my weight." Well, doc, then why at this weight did I used to hike, kyak, etc. with no breathing problems??? (that was before I got sick)

I had this problem a few weeks ago. My CO2 levels were low and my NO lowered my diamox to 1500mg a day. I still have moments when I have this issue but I smoke as well. I don't know how much of this is from the diamox or the smoking.

Kay

Sounds like you have metabolic acidosis. I'm not a doctor but I, like many of us here have been working on managing all of the assorted nastiness that we deal with having IH/PTC.

I have been on varying levels of Diamox over the years and now am very sensitive to developing metabolic acidosis. I am tapering down off Diamox b/c the acidosis is out of control and the drs think it is doing more damage to my body than help. I have the "heaviness" in my chest, trouble taking deep breaths, and chest pain along my sternum. There have been times that the pain in my chest is so strong that it wakes me up. The Diamox has also caused kidney stones, and all kinds of other problems that many of us have worked through.

Several folks here have also developed MA from Topamax. I think they only way they diagnosis MA is through arterial blood gases (which are not fun). You may want to ask whoever is prescribing the Diamox to run this test. You might not be able to get rid of the MA if you stay on the Diamox but it may make you feel better to know what it is causing the shortness of breath.

Hope this helps!
Bianca

Happened to me many times and each time my co2/bicarbs were low. Docs always told me that means it's working ...geez. But it got so bad they lowered my Diamox at one point and it eased up.