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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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Reply To: Diamox Side Effects?? I am so loopy!

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › POTS › Diamox Side Effects?? I am so loopy! › Reply To: Diamox Side Effects?? I am so loopy!

April 6, 2012 at 12:58 pm #1948
ourfullhouse
Participant

MattiesMom,
You are welcome! =)

Your cardiologist that gave you the Diamox RX can order the blood work. It is just a regular CBC and Chem Panel. Nothing weird or fancy. It would have been good if you had a baseline of where you were before you started the Diamox (maybe you have some old labs you can look at to compare to?). This is standard of care when someone is on Diamox. I also had a problem with my platelets, went lo and then high, etc. when I was running too acidic. That is why the CBC is good to do at the same time as the Chem Panel.

(side note: always ask for a copy of your lab results so you can track for yourself how your acidity is doing… sometimes you could be within normal limits, but only by one number and you went from one end of normal to the other and you would want to add more bicarb in that instance, whereas some doctors tend to only look to see if anything is outside of normal. I’ve even had doctors miss things that were outside of normal, telling me all my labs were normal, only to find out once I got the hard copy of the report that 2-3 things were NOT within normal limits. Argh!)

For me there was a time when I was ready to give up on the Diamox because the symptoms from being too acidic were as bad as the POTS, etc. It was only due to the diligence of the lab testing and increasing my bicarb till we could see my numbers finally be in the normal range that I was able to make this work for me. And, it certainly has paid off!

Baking soda in water is really hard to measure and again I will speak to consistency being key here. At first I was filling my own gel caps with baking soda, but it was time consuming and I had no idea how to gauge how much bicarb I was getting. The bottle of bicarb tablets is cheap, so easy to use and now I know exactly how much I am taking. http://www.amazon.com/gp/product/B002CPDF9E/ref=oh_o00_s00_i00_details

I also get the tingling in my hands and feet, like they are going numb. I had it much worse in the beginning and now go days/weeks without it and then have a day where I notice it again. So, I think that is one of those things that gets better the longer you are on it consistently.

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