Wow, that sounds exactly like my situation. My primary care doctor took me off Diamox temporarily b/c CO2 got down to 13. Now I can breathe and have a little more energy but my head, eyes, hearing, brain/congnition are back to the old situation.

One of the biggest issues for me is when my CO2 is that low and breathing is that tough, and my acidity is in the bottom of the range I'm vulnerable. If I get sick, especially with diarrhea or vomiting, my electrolytes and pH balance can get really bad really fast. I think I'm catching things more, too. It's a risk just like everything else.

Yes, talk it over with your NO because it has something to do with what dosing level you guys choose to keep you at. It's a tradeoff. Side effects vs. IH symptoms. Choosing the best of two evils.

I get the feeling that when I go back on Diamox (soon, I hope!) my dose will be adjusted downwards again to 1500mg. It used to be 3000, my body couldn't take it, down to 2000, now probably down again. I wasn't great at that dose when I was on it before. That's why it was higher.

Good luck, and be sure to let us know what he says, okay?

Oh - you may want to ask him hypothetically if your body isn't able to tolerate this level of Diamox, what would be the next step? As for other questions, what things are concerning you right now? Make a list and prioritize it. Ask the most important things first.

Oh my goodness! The opthamologist was wonderful, she was kind and nice. However, she was not a neuro-opthamologist as I was lead to believe. Note to anyone else, and as a future note for me, check the qualifications of who you are being referred to. She did refer me to a Neuro-opthamologist - I checked - my visual fields are bad, but she did not see the swelling on my optic nerve.

After the appointment with her I went and took my lab results (due to being in the same town as the neurologist) to his office and complained. I have called, I have been to the ER, I have been nice, and now I'm mad. If I walk further than from my couch to the bathroom I get out of breath and feel as if I've ran a marathon. If I do dishes I breathe the same as running around the block uphill. It's not right and I can't get this doctor to answer me. Sorry to be so poor me pity me here but I'm really trying and it's just not working! I started calling Monday, today is Wednesday, he MAY call back tomorrow and then it's the weekend...this stinks....

Sorry to rant

well, maybe you have an airway problem on top of this. you will feel a lot more resistance in a narrow airway than you will in a larger airway, with a need to increase your minute ventilation. find your brain MRI and look at the view that cuts through your head at the tip of your nose; look at the diameter of your airway behind your tongue. before surgery mine was 1mm.

According to the neurologist I am currently seeing, Diamox does not cause people to hyperventilate. According to anything I have been told before now (including by him) the previous statement is a big fat lie.

Ugh!

OK, this is basic acid base physiology. we learned this in medical school and your doc knows this. Diamox causes a metabolic acidosis. the bicarb level drops. in order for the body to buffer this, it responds with a compensatory respiratory alkalosis. what this means, is it increases minute ventilation in order to decrease carbon dioxide levels. hyperventilation. perhaps what your neurologist meant is that you should not be able to perceive your hyperventilation, it should not produce a sensation of shortness of breath. hence my conclusion; that you perceive it because there is something wrong with your airway such that increasing minute ventilation produces a perceptible increase in airway resistance.

and if you don't have enough room for your airway in your neck, what else do you not have enough room for? could it be, possibly, your jugular veins??? pull out your brain MRI and look at the airway view. go see an ENT and ask for a fiberoptic scope of your airway. get pictures taken, regardless of their conclusion about it. maybe this will shed some light.