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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: CCSVI as the cause of POTS

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › POTS › CCSVI as the cause of POTS › Reply To: CCSVI as the cause of POTS

July 23, 2012 at 6:06 pm #2659
Dr. Diana
Keymaster

Well, I’ve been on Diamox for a while now and it’s amazing the difference with my headaches. I had my CO2 checked at about 3-4 weeks with good results. I also purchased some PH strips and capsules for baking soda. My dosage for Diamox is leveled out now. 1/2 in the morning, 1/2 at noon, 1/2 at 4:00 and a whole tablet at bedtime. If I struggle with a headache, I check my PH and usually find it’s acidic. A couple of baking soda capsules take care of it! We haven’t gotten to the point of testing for CCSVI yet. It would mean traveling quite a distance for us.
I could have an fMRI done here, but the sono techs here probably know nothing about CCSVI. Though the Diamox helps with my headaches, I still struggle with the other symptoms of dysautonomia. The fatigue and pre syncope symptoms are the worst and I feel it’s made even worse by the electromagnetic field at work. I’m better when I can work from home. I really feel for everyone who has been struggling with this for years! I’ve only been at it for 1 year and I’m so exhausted trying to get through each day!

I’m also getting treatment for TMJ disorder. Hoping that will help too. The night guard my dentist made for me had my jaw locked up, so I’m hoping that fixing my jaw will also help with the headaches.

Great news, Kenzie!! Did you try Zyrtec (most of us take a double dose) and a little bit of Zantac? If you are like us, OMG will that help with POTS. There is a point that I need to make (rather strongly), and am revising my book to reflect this point. HEADS UP! Although CCSVI (and other venous stenoses) are very common with us, and the likely culprit for the fallout of numerous symptoms, I am NOT recommending having angioplasty at this point. My research is showing me that our vessels tend to be “sticky” and develop fibrosis. They are, basically, very inflamed. Adding FURTHER endothelial injury via angioplasty may help (especially short term), but for many of us, I believe it sets us up for thrombosis down the line. I’ll release my research on this soon. I’m now researching ways to prevent/control this problem. Meanwhile, do we have CCSVI? Yes. Should we treat it? Maybe not… OH –TMJ; mouthpiece! YES! That will help control your intracranial pressure at night time. Great job with your pH, BTW! Big hug, Diana

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“Dr. Diana will always hold a very special place in my heart for her selfless devotion to helping everyone, not just the Ehlers-Danlos community. I hate to think what my life would be without her insight and guidance.”

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