Living with mast cell activation syndrome (MCAS) is a truly an isolating experience, not only because it’s debilitating, but it is extremely difficult to understand. MCAS is complicated and unique to each individual. My goal is to raise awareness about MCAS, chronic illness, and disability through humor.
I was diagnosed with MCAS in December 2015 after five abnormal mast cell test results after a lifetime of symptoms. I rely on medications and supplements to block or reduce the ridiculous amounts of chemical mediators released by my mast cells. I spend most of my time in solitary confinement (even pre-pandemic!) to minimize my exposure to triggers.
Here are a few of the health conditions MCAS caused me before remission:
- Ehlers-Danlos syndrome (EDS): My connective tissue is fragile and my joints are hypermobile. So, my muscles have to work extra hard to keep everything in place. In 2018, I had a cerebrospinal fluid leak, a complication of EDS.
- Dysautonomia: When I stand up, my blood pressure spikes. During my first few years of my MCAS diagnosis, my heart rate would spike also. There are many types of dysautonomia, dysfunction of the nervous system, including Postural Orthostatic Tachycardia Syndrome (POTS). Read more about dysautonomia and autonomic testing.
- Interstitial cystitis (IC): Inflammation of the urinary tract is a very common symptom of MCAS. I began experiencing symptoms at age 3. Salicylates are my biggest urinary tract trigger. My right ureter swells and spasms often causing obstructions and pain in my right kidney.
- Premenstrual dysphoric disorder (PMDD): I have severe mast cell reactions to normal hormone fluctuations. I take continuous hormone pills to suppress fluctuations and avoid reactions.
- Food sensitivities: soy, salicylates, histamine, FODMAPs, and gluten.
I am currently in remission of mast cell activation syndrome (MCAS) thanks to doxycycline and a basic mix of first line treatment. I don’t share specifics because people try my treatment out of desperation even though every patient is different and copying someone’s treatment can be harmful. First lines of treatment are widely known and available. I wouldn’t be in remission if I hadn’t diligently gone through five years of treatment trial and error.
However, my remission has demonstrated how mast cell activation may be underappreciated when it comes to Ehlers-Danlos syndrome (EDS) and dysautonomia. My MCAS treatment has eliminated my symptoms of EDS and dysautonomia. Read my remission blog posts.
Doxycycline has been known to help a small subset of MCAS patients due to its anti-inflammatory properties. Researchers are also studying doxy’s effects on hEDS. I do not recommend asking your doctor about doxycycline unless you have exhausted first, second, and third lines of MCAS treatment under the guidance of a knowledgeable specialist.
Many MCAS patients need to take steroids as daily and rescue treatment literally in order to survive. Unfortunately, long term steroid use can cause many side effects, including secondary adrenal insufficiency, a condition in which the adrenal glands atrophy and produce less cortisol. Additional, MCAS itself may cause adrenal insufficiency. When your body does not have enough cortisol, it can go into crisis and you can die.
Although I do not need steroids anymore for MCAS, because I am in remission, my body is dependent on daily steroids. We aren’t sure yet if I have primary or secondary adrenal insufficiency. High intensity exercise requires a lot more cortisol, so it’s been a challenge to avoid adrenal crisis as a competitive athlete. Read about my past struggles with prednisone tapers.
My latest interview
- November 2020: Finding Your Range with Jeannie Di Bon
- June 2021: Standing Up to POTS Podcast
- December 2021: Finding Your Range with Jeannie Di Bon
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