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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 dosing set schedule or prn?

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › POTS › Diamox dosing set schedule or prn? › Reply To: Diamox dosing set schedule or prn?

August 23, 2015 at 3:09 pm #5636
ourfullhouse
Participant

I think what it is meaning is that once you are on diamox and you get the pressure under control (which can take higher doses and take a while to achieve) you might find that you can take less diamox to maintain the lower pressure. For instance if you started at 500 mg three times a day (or whatever) and after some time at that dose your headaches and other high pressure symptoms went away you could try going down a little at a time and find where the symptoms start to come back. Dr. Diana always says to take the least amount of diamox you need to reduce the high pressure because diamox has side effects and so less is better, but you should always take enough to be therapeutic.

I think the part about stopping taking it is that some people can take diamox for a time (6 months, a year, etc.) and whatever was causing the high pressure heals (like in a brain injury or compressed nerves, etc.) and people can wean down and then find they can go off it without the high pressure symptoms returning. This is what you can find in medical literature because diamox is used for a lot of different reasons and lots of different patient groups, not just our flavor of zebra’s that we mostly see on this forum (in other words, I don’t know of anyone who has gone off it for very long without symptoms returning, but maybe we just don’t hear from them after they are doing better?).

All that to say it isn’t meant that when you start out that you would take it only for days you have symptoms. I hope that makes sense.

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