You are not alone.
From Dr. Diana: Thanks so much for sharing your story, Jesse, and I’m delighted to hear you were able to return to work! We are working hard to help patients find the cause of their "mast cell activation", so that they can return to health. Hang in, Jesse and thanks for sharing!
“In October of 2012, I found myself in an unimaginable place. Basically bedridden, falling down almost whenever I walked, in constant pain, out of work and suffering in countless other ways. Although I had managed after years of struggle to receive a POTS diagnosis, none of the "traditional" POTS treatments were working for me; in fact, the beta blockers and many of the recommended salt-rich foods were making me sicker and sicker. The long-term disability insurance that I had earned at my job as an attorney cut me off before the policy even began to pay out, as my illness did not fit into one of their neatly defined boxes. I had no money, no family upon which I could rely and the relationship with my very supportive boyfriend was falling apart.
Up until that point, while I had researched POTS at length, I was discouraged by those around me to dig too deeply into the subject (it was depressing, my prognosis was bleak, etc.). With truly nothing left to lose, I threw myself into online research. By chance, I happened upon a comment in a support group that linked to Dr. Driscoll's theory. As I read the theory, my heart sank. I didn’t want what I was reading to be true. Although I knew I had POTS, and suspected Ehlers-Danlos Syndrome and mast cell activation disorder, I didn’t know what having that trifecta of ailments even meant. Excess water in my brain was a terrifying proposition. Still, I couldn’t deny how true Dr. Driscoll’s words rang.
I am very lucky that my cardiologist was open to exploring the treatment recommended by Dr. Driscoll. I began on the Diamox. The first morning I woke up after taking the pill, I could move my head again freely in a way I hadn’t been able to do for years. I was blown away. The day after that, I was able to stand the whole day without falling down and cook Thanksgiving dinner! It felt like a miracle. The Diamox wasn’t without its issues—as I wasn’t yet managing my suspected mast cell condition with anything beyond Tagamet and Zyrtec, the Diamox triggered mast cell release, resulting in excruciating heartburn, flushing and other unpleasantries. Once I started on the sodium cromolyn and my own low histamine diet, however, these issues began to stabilize.
I continued to improve dramatically. I started to understand how the various aspects of the theory worked together. Based on Dr. Driscoll’s theory, I sought and received a diagnosis for my Ehlers-Danlos Syndrome. As I followed Dr. Driscoll’s advice, days would pass where I could walk without incident (And see! And breathe! And sleep!). While I was still learning to manage the mast cell condition, my life began to feel manageable. By February of 2013, I was looking for work again. In April, I began working again full-time as a lawyer.
It’s now been over two years since I first discovered Dr. Driscoll’s work. I’m still working full-time and now managing a busy social life (including planning a wedding!). My personal relationships have been restored. Although my EDS and mast cell condition will always need to be managed, I have the tools to do so. I take every opportunity I can to share these tools with others. I am so grateful for Dr. Driscoll’s work—I truly don’t know where I would be if it weren’t for her. She’s given me my life back. I await her continued research on this subject with tremendous hope.”