Ourfullhouse, Thank you for the reply. I have increased slowly as the side effects have tamed down significantly, but it still makes me VERY tired. Night before last, I took full 125mg pill before bed, was SO tired upon waking, but was amazed by the lack of headache and nausea when I first woke up. I had to be functional enough to pick up my daughter from school, help her with homework, do things around the house, so I took 62.5mg 3 times during the day, but feel breakthrough headaches and POTS symptoms at times. Last night I got brave and took 250mg before bed. I woke (after forcing myself out of bed) to no headache and had mental clarity, no nausea. I am still extremely light sensitive, and having breakthrough head and neck aches. I know I need to figure out the proper dose still. I have been drinking LOTS of baking soda in water. I do not have anyone knowledgable to order blood panels at this time. I do have pH strips and have been testing my saliva to be sure I do not get too acidic.
My “POTS knowledgable” cardiologist has never tried Diamox with any of his POTS patients, but was willing to allow me to try it. He gave me a 3 month RX of 125mg twice daily, and told me I could play around with the dosage. He wants me to report back to him in 2 weeks.
I tend to react to many prescription medications, in unexpected ways, so I guess this may just me adjusting to the meds? I do still have very numb hands on it (at times), and increased light sensitivity, but I had light sensitivity before starting on it, just seems even worse now. I had vision issues on/off before starting it, but strain even more now to try to read these threads on computer screen. My giggly delirious thing seems to have passed. I still have increased appetite which is AWESOME!
I think you are right, I need to take it at a more structured/ scheduled times. Today, I will start a diary of symptoms and times, and try to be consistent when I start feeling it is helping the most. Also, I think I will ask the pharmacist for Sodium Bicarb pills when I am there next time.
Thanks again for feedback!