Twilah Hiari is from Overland Park, Kansas, and like many patients with MCAS, she has had symptoms her entire life (since infancy), but did not receive a diagnosis until she saw Dr. Afrin in July of 2017.
Twilah describes symptoms that are “all over the place.” For this 42-year-old, a “mild MCAS day” consists of flushing, itching, gastrointestinal tract upset, and tendon pain all day long, accompanied by an increase in speech and mental difficulties in the evening and insomnia at night. On days where she’s more flared, she experiences more pronounced speech difficulties, urinary frequency and urgency, chest tightness, and dizziness. Twilah also notes ongoing dental issues including root canals and cavities (despite impeccable oral hygiene), excess hair loss, ringing in the ears, and a host of neurological symptoms. She suspects that she has POTS and Ehlers-Danlos Syndrome, two common co-morbidities associated with MCAS.
Prior to her diagnosis with MCAS, Twilah struggled with Premenstrual Dysphoric Disorder (PMDD) and eventually had surgery for it. She notes that many of her peers with MCAS also report connections between female hormones and their mast cell-mediated symptoms. It’s very possible that PMDD is a manifestation of underlying MCAS; hopefully future research will focus on the potential connections between the two.
One of the things that sets Twilah apart is her passion for advocacy about the connections between MCAS and mental health, and more specifically, autism. Twilah experiences neuropsychiatric symptoms in response to certain mast cell triggers. These include sensitivity to sound, problems with expressive and receptive communication, and sensitivity to light and movement. She experiences a large disconnect between her thoughts and what she can express through speech. She notes that her speech becomes stammered, slurred, grammatically disordered, or sometimes non-existent.
Twilah describes auditory processing problems that make it difficult to understand others, especially when there are background noises and when she’s in an MCAS flare. She sometimes experiences hyperacusis, or the amplification of every-day sounds. Twilah describes episodes where she’ll get stuck in a verbal loop of repeating the same phrases, and anxious meltdowns that can be soothed with “stimming” or self-stimulatory behaviors such as watching fish videos and playing with magnetized hematite.
Dr. Theoharis Theoharides is a leading researcher in the areas of inflammation, autism and mast cells, and Twilah is well-versed in his work. “Dr. T. C. Theoharides posits that some manifestations of autism are what can be described as ‘brain allergies’. He’s absolutely right in my case. The neuropsychiatric symptoms I have in response to certain mast cell triggers overlap completely with what are presently considered to be qualities associated with autism.”
MCAS-type reactions are scary, and even more so when they trigger communication difficulties. Twilah explains, “For me, the most challenging parts of MCAS are the neurological reactions. When I have a bad reaction, and become profoundly confused and non-verbal, it’s not only dangerous for me, but incredibly stressful to anyone around me. If I can’t communicate what’s wrong, or what triggers I was exposed it, it makes it more challenging to help me get through the reaction.”
The decades of debilitating illness haven taken their toll in more ways than one. The symptoms have prevented employment outside of the home. Twilah adds, “Medical bills from years of trying to treat severe, undiagnosed, MCAS drove my spouse and I to bankruptcy in 2013, so my decision to try to heal with dietary changes, trigger avoidance, and supplements is motivated by finances as much as my history of adverse reactions to pharmaceuticals.” Like so many patients with MCAS, Twilah has a history of severe reactions to the additives, fillers, excipients and binders in medications and prefers to focus on a more holistic approach.
Despite the challenges that Twilah faces each day, she has already begun to make “lemonade” out of the difficult cards she’s been dealt. She enjoys writing projects and has an outstanding blog that shares her patient experience and expertise. And, fortunately, in the past few years she feels like she is making progress in the right direction in terms of navigating life with MCAS. In addition to stimming, Twilah finds the anti-histamine and anti-inflammatory properties of silbinin (found in milk thistle extract and tea) to be helpful for calming her neuroinflammatory symptoms.
“My greatest hope for the future is that knowledge and understanding of mast cell disease will begin to permeate the medical field. Right now, there are far too many practitioners who are eager to dismiss mysterious symptoms, especially symptoms that affect multiple body systems, as psychogenic. When you tell a person with mast cell disease that it’s all in their head, you’re not only blaming them for a debilitating illness, you’re removing access to treatment for that illness. Yes, doing something like training the brain through meditation is fantastic. I’m Buddhist and the value of meditation in my life is huge, but it’s unreasonable to expect an ordinary person to cure a serious immunological disorder through the power of their mind alone. It sets up people for crushing disappointment and self-blame that makes them even sicker. But if you encourage people to integrate mindfulness with actual treatments like antihistamines and mast cell stabilizers, you’re more likely to set a person on a path to healing. So ultimately, I’d like to see more accurate MCAS diagnoses and fewer psychogenic aka blame the victim diagnoses.”
Twilah offers hope and inspiration for so many patients suffering with the physical and psychological impacts of MCAS. “I absolutely think it’s possible for many of us to establish or regain at least some measure of health if we sort out our triggers and figure out what our bodies need to heal. My advice is pay attention to your body and document everything. Since I started a journal documenting everything- what I eat, what supplements I’m taking, the weather, what I’m environmental triggers I’m exposed to, etc., I’ve learned a lot about how to honor the needs and limitations of my body. And buy a cute Vogmask! Protecting yourself against environmental triggers doesn’t have to be boring and unfashionable.”
You can find a link to her blog here: athinkingpatient.com
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