- This topic has 1 reply, 1 voice, and was last updated 3 years, 8 months ago by .
- You must be logged in to reply to this topic.
Dear Dr. Driscoll:
I have read your theory inside and out, and know in my gut you understand whats happening more than any of the 50+ doctors I’ve seen. I have EDS HM Type III and developed POTS after a very serious viral infection and a whiplash injusry. I have all the symptoms of high intracranial pressure and the crushing base of skull/top of neck headaches that come with it. Frankly, the only way I can survive is with Xanax.
I have been taking Diamox for a year and following the MCAS protocol. (and my sodium bicarbonate levels are fine!.) I even take Parasym Plus daily.
But I’m not recovering. I’ve also found out I have chronically low IgG, particularly subclass 1 which perhaps makes my POTS autoimmune in nature.
I’m looking into CCSVI but no doctor’s are taking me seriously.
I just don’t know how to move forward.
Please – any advise would be appreciated!
I’m so sorry you are suffering so much, my friend. There are no easy answers for most of us,
but it does take careful testing to figure out our individual differences. Was your tryptase positive?
We see MANY patients who have (incorrectly) been given a diagnosis of MCAS with negative testing. I think this is a mistake for us!
With negative testing, doctors should consider all conditions that may mimic it before resorting to a diagnosis. Ditto with high intracranial pressure. If symptoms of high pressure do not resolve with treatment, we should get off of the treatment (Diamox in this case), and our doctors should look into conditions that can mimic high intracranial pressure. It is tough, believe me! I would ask your doctors what may mimic your presentation, and to please dig deeper! 🙁
This website was created to inform, educate and brainstorm with fellow patients and doctors. The content should not be used as a substitute for professional medical advice, diagnosis or treatment. Readers are encouraged to confirm all information with other sources and their physicians. The creator of this site will not be liable for any direct, indirect, consequential, special, exemplary, or other damages arising from the use of this website.
“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.”
-- Chris Gross