Barbara,
Really don’t want to go the way of the collar quite yet. She isn’t very symptomatic, except for headaches, right now. If that were to change, definitely would try it.
Today they did an orbital ultrasound to see if there were drusen in her optic nerves. And, of course, there are not. It’s painful to go through all these elimination steps. But with this out of the way, I’m going to call the neuro ophthalmologist office tomorrow and ask for the Rx to be changed to the regular Diamox and to order a metabolic panel. If he won’t do the blood work, I’ll have to make an appt with her pedi and ask to get the labs done that way.
Any thoughts on what dose of regular Diamox would be vs the ER type? I know it should be dosed 3 times a day instead of the twice a day she is on now. She is on such a high dose of the ER (1000mg BID) I can’t imagine needing that much in regular Diamox, based on my own previous use of it (which I think was 125, 125 and 250 – though I had to take bicarb to keep it working). Pretty much for me I could tell it was working if I got at least a slight tingle in my hands or feet each day and if I didn’t I could pretty much figure it was time for more bicarb. And so, I’ve been really wondering about how effective the ER my daughter is taking is because she has only had a slight tingle maybe twice in the two months since she started taking it. I know everyone is different but since we are related and so similar in health issues I would think she would have more tingle from taking it if it was working well.