Susan, I understand how you feel. this is a very hard disease to live with, especially as no day can be the same, and there aren't any definitive answers to explain why you have it. What makes it more frustrating is when it's hard to make people understand, because they tend to think you don't look ill at all.
I don't suppose the side effects from the Diamox help either, so it's completely understandable that you feel the way you do. We understand that here because we all have felt and are feeling the same, which is why we try to help our members to find ways to make life better, using methods that have helped us.
Hopefully we can find ways to help you too, and please don't be a stranger