Mast cell activation syndrome (MCAS) occurs when the mast cells in your body release too much of the substances inside them at the wrong times.
Mast cells are part of your immune system. They’re found in your bone marrow and around the blood vessels in your body.
When you’re exposed to stress or danger, your mast calls respond by releasing substances called mediators. Mediators cause inflammation, which helps your body heal from an injury or infection.
This same response happens during an allergic reaction. Your mast cells release mediators to remove the thing you’re allergic to. For example, if you’re allergic to pollen, your mast cells release a mediator called histamine, which makes you sneeze to get rid of the pollen.
If you have MCAS, your mast cells release mediators too frequently and too often. It’s different from another mast cell disorder called mastocytosis, which happens when your body makes too many mast cells.
Keep reading to learn more about MCAS, which, according to The Mastocytosis Society, is becoming more commonly recognized.
Too many mediators can cause symptoms in almost every system in your body.
However, the most commonly affected areas include your skin, nervous system, heart, and gastrointestinal tract. Depending on how many mediators are released, your symptoms can range from mild to life-threatening.
Symptoms you might experience in different parts of your body include:
In severe cases, you can develop a life-threatening condition called anaphylactic shock. This causes a rapid drop in your blood pressure, a weak pulse, and narrowing of the airways in your lungs. It usually makes it very hard to breath and requires emergency treatment.
Researchers aren’t sure what causes MCAS. However, a 2013 study noted that 74 percentTrusted Source of participants with MCAS had at least one first-degree relative who also had it. This suggests that there’s likely a genetic component to MCAS.
There’s no cure for MCAS, but there are ways to manage your symptoms. Treating your symptoms can also help to find the cause of MCAS.
You may need treatment with:
H1 or H2 antihistamines. These block the effects of histamines, which are one of the main mediators released by mast cells.
Mast cell stabilizers. These prevent the release of mediators from mast cells.
Antileukotrienes. These block the effects of leukotrienes, another common type of mediator.
Corticosteroids. These should be used as a last resort for treatment of edema or wheezing.
For more severe symptoms, such as anaphylactic shock, you’ll need an injection of epinephrine. This can be done at a hospital or with an auto injector (EpiPen). Consider wearing a medical ID bracelet if your symptoms are severe, at least until you figure out what your triggers are.
New Digital Health Platform Targets 50 Million Americans With Chronic Pain
Avi Dorfman has had a front row seat to the toll of chronic pain. He spent years trying to help a loved one find relief—to no avail.
After visits to primary care doctors, chiropractors, and physical therapists didn’t help, Dorfman’s friend Dr. Jacob Hascalovici said to him, “You know I’m a pain doc, right?” Dorfman hadn’t realized Hascalovici, a Board-certified neurologist with a PhD in neuroscience, specialized in interventional pain management.
A consultation with Hascalovici helped, giving Dorfman’s loved one many months without pain.
“It was remarkable,” Dorfman said. “[Hascalovici] immediately understood what the issue was.”
That positive experience after so much frustration left Dorfman with a question for his friend: “Why did it take us so long to get to you?”
The answer is relatively simple: supply and demand. Hascalovici is one of fewer than 6,000 pain management physicians in the United States. But there are an estimated 50 million adults in the U.S. living with chronic pain, according to the CDC.
To improve access to pain care, Dorfman and Hascalovici teamed up with another friend, Yakov Kagan, to launch Clearing, a digital pain management platform. Last week, Clearing announced that it has raised $20 million in seed funding.
Clearing aims to offer medically sound alternatives to opioids, which it does not prescribe.
“Pain is a unique space,” said Steve Kraus, partner at Bessemer Venture Partners, one of Clearing’s lead investors.
Along with physical, psychological, social, and emotional components of pain, Kraus said, there is also often a stigma to it. He cites the opioid epidemic for contributing to that stigma.
Hascalovici, Clearing’s chief medical officer, acknowledged that pain management can carry a taint left by unscrupulous actors who sell unproven treatments. “There unfortunately were some bad apples in the field,” he said.
In contrast, Clearing plans to take a strictly science-based approach, according to Kraus. “We want to be gold standard, best-in-class, outcomes-driven—the opposite of the pain management huckster.”
To start, Clearing will offer “stage one interventions”—a physician-prescribed, personalized home exercise program and prescription-strength topical pain relievers based on a detailed patient questionnaire.
To compete with many patients’ first stop—the over-the-counter pain relief aisle at a drug store—Clearing customers get a free 30-day trial and then pay an average of $50 per month for the personalized program and products.
Clearing’s approach resembles the way Hascalovici practices in person, based on industry standards. For every new patient he sees in his office, Hascalovici starts at square one—with exercise, physical therapy, and topical pain relievers—before escalating slowly from there as needed.
“I don’t think [first-line treatments will] help every single chronic pain sufferer completely, but I definitely think that they’re part of every single chronic pain sufferer’s journey,” Hascalovici said.
Dorfman calls Clearing’s approach “a medical hug,” grounded in both science and empathy.
This approach could help reduce long-standing bias in the recognition and treatment of pain, particularly for women and people of color.
“I think you eliminate bias from a patient perspective when you ask the patient how they feel,” Dorfman said. “It’s not about, ‘Are you this color or that color or this gender?’ It’s about, ‘How do you feel?’ It’s your version of reality that matters to us most, not our perceived version of your reality.”
Clearing users self-report their symptoms and experiences, sharing their own stories on their own time. Doctors review the information to inform a personalized treatment plan. Hascalovici believes this asynchronous communication should increase capacity to treat more patients.
The new investment in Clearing is part of a massive wave of direct-to-consumer digital health funding.
Venture capital investment in digital health overall reached nearly $7 billion in the first quarter of 2021, the largest funding quarter ever for the digital health sector.
Among the largest 2021 deals so far is Hinge Health—an in-home musculoskeletal therapy company—which raised $300 million. Other companies tackling chronic pain include AppliedVR, which has raised $29 million, and Spine Zone, which raised $12 million earlier this year.
Kraus said he used to think the direct-to-consumer (DTC) healthcare market was “dead on arrival,” but a host of factors have opened up the DTC healthcare economy.
“People are often reaching into their pockets to pay for healthcare,” Kraus said, noting that nearly 60% of consumers now have a deductible of $1,000 or more, double what it was a decade ago.
Also at play are generational differences among consumers accustomed to getting everything on demand—from food to cars—and a younger generation of doctors who are more digitally savvy.
Covid-19 only accelerated these trends.
“Telemedicine went from [being] in the first inning to the sixth or seventh inning of a baseball game overnight,” Kraus said.
Kraus doesn’t expect DTC to work for every aspect of healthcare. Think cancer treatment or kidney dialysis where in-person care is still essential.
But he is optimistic about DTC’s potential for indications in “first-dollar healthcare,” where consumers are directly involved in decision-making and increasingly paying for treatments out of pocket.
Pain management is one such opportunity, but the value may be broader than financial in Kraus’ view.
“I think there’s going to be the power of this community and this set of doctors and this experience that makes [patients] feel heard and felt and validated,” he said. “That’ll do something that is psychologically and emotionally healing for them as well…That’s what I hope it would do for the health of people and for the system.”
Clearing’s cofounders agree.
“I think there is an enormous opportunity to help people,” Hascalovici said. “This is a digital healthcare revolution that we’re seeing unfold. It might just be the major paradigm shift that chronic pain care has needed to really help push our field forward.”Deb GordonUnfollow
Still, as the World Health Organization (WHO) points out, headache disorders are some of “the most common disorders of the nervous system.” The WHO says that 1 in 7 adults worldwide has migraine, and that it can be 3 times more common in women than men.
Purple is the color of MHAM; this association originated during a 2004 awareness campaign, and it was designated the official color for MHAM in 2012.
Migraine and Headache Awareness Days and Weeks
Throughout the awareness month are several days dedicated to shining a brighter spotlight on particular aspects of migraine and headache disease.
Migraine at Work Is June 1
Those who wish to show support for people living with migraine or raise awareness of the disease are asked to wear purple to work in June — whether you’re working from home or at an office. To help put a face to the movement, the National Headache Foundation is encouraging people to take a selfie and share it on the organization’s website. Learn more about the observance here.
Veterans With Headache Diseases Is June 6
CHAMP has tied this awareness day to the 76th anniversary of D-Day. According to MHAM, veterans are more likely to develop migraine and headache diseases, per the Department of Veterans Affairs, and some researchers believe this directly results from their military service.
Remembrance Day Is June 7
Remembrance Day honors Melissa Dwyer, who died by suicide at age 22 on this day in 2013, as well as others whose headache, migraine, and cluster diseases have also led to tragedy.
Headache Diseases and Men Is June 20
According to MHAM, 6 to 8 percent of men live with migraine. This day, which coincides with Father’s Day, serves as a reminder that headache is gender blind.
Shades for Migraine Is June 21
Started by the Association of Migraine Disorders, the organization supplies purple sunglasses so others can stand united with those who live with migraine. In past years, the association has conducted an initiative called Taking It to the Streets, which spreads awareness at popular locations such as Times Square in New York City. The ongoing pandemic has scuttled such events, but the message of Shades for Migraine can still be spread by social media using the hashtag #ShadesForMigraine.
Chronic Migraine Awareness Day Is June 29
Red and purple are the colors for this day, sponsored by Chronic Migraine Awareness. Alongside its rally monkey mascot, the campaign uses the hashtag #RallyAgainstChronicMigraine.
Community Walks and Runs in Support of Migraine and Headache
Miles for Migraine
Miles for Migraine, a nonprofit based in South Burlington, Vermont, has been holding runs to raise awareness and help find a cure for migraine disease and headache disorders since 2008. The organization sponsors races throughout the year in cities across the United States.
Since March 21, 2020, most runs have been modified as virtual events in which participants can run, walk, climb stairs, or use a treadmill to raise funds. The organization encourages participants to submit photos and stories to feature on social media and in its newsletter. Registrants will receive an event shirt and finisher medal by mail, according to Miles for Migraine. Visit the events page for a full 2021 calendar.
Several migraine advocacy groups are holding a virtual fundraiser June 2 through 10 for the Alliance for Headache Disorders Advocacy (AHDA)’s annual Headache on the Hill (HOH) event. The ADHA advocates for more equitable federal policies toward Americans with disabling headache disorders.
Registration is required for Walk, Run, or Just Relax, and participants are asked to reach out to friends and family for donations, publicize the event on social media, and tag their federal, state, and local representatives in social media posts. During the week of the event, participants are encouraged to post pictures on social media of themselves walking, running, or doing the activity of their choice, and to use the hashtag #HOHVirtualWalkRunRelax.
Clusterbusters Annual #CureForCluster 5K
Clusterbusters’ annual 5K takes place during Father’s Day weekend. This year’s virtual event is June 19. Clusterbusters, which aims to improve the lives of those with cluster headaches, asks participants share photos on social media using the #CureForCluster hashtag.
Conferences and Meetings on Migraine and Headache
Conferences and meetings on migraine and headache take place every year. Some are aimed primarily at professionals, while others are aimed at people living with migraine disease or headache disorders.
Migraine World Summit
The sixth annual Migraine World Summit will take place March 17 through March 25. This virtual event features dozens of speakers with expertise on migraine; four interviews will be released daily. Each year, the summit is broadcast online for free, and you can register to access the schedule of talks. Topics for 2021 include racial inequities in migraine treatment, how weight affects migraine disease, and managing migraine with little to no insurance.
American Headache Society Annual Scientific Meeting
Focusing on advances in headache sciences, the American Headache Society meets each year to spread the word about what’s in the works to help those with headache disease lead more comfortable lives. The 2021 event will take place as a virtual meeting from June 3 to 6.
Diamond Headache Clinic’s Headache Update
Scheduled for July 15 through 18 at Disney’s Grand Floridian Resort and Spa outside Orlando, Headache Update 2021 from the Diamond Headache Clinic is set to proceed as an in-person event. Organizers are in the process of planning the setup and agenda. Typically a four-day program, Headache Update hosts about 25 doctors who specialize in all areas of headache medicine, providing lectures with updates on treatment and diagnosis for a growing number of annual attendees.
RetreatMigraine brings together people living with migraine and migraine experts alike, for an interactive, multiday event combining patient education, advocacy training, and complementary therapy experiences. Sponsored by CHAMP, this conference and retreat is scheduled to take place at the Crowne Plaza Redondo Beach in California from October 15 through 17.
Volunteering and Partnering Opportunities
The Association of Migraine Disorders and the Shades for Migraine campaign have attracted many who wish to volunteer, to the point that not all requests could be met. As a result, a volunteer registry was established. By signing up, prospective volunteers enter a database that’s shared with the 40-plus Shades for Migraine partners.
How to Spread Awareness About Migraine and Headache
Getting the word out on headache disease is more challenging during the COVID-19 pandemic, but there remain plenty of ways to get involved, from social media to opportunities involving more time and effort
For those who want to be part of change at the federal level, one group is among the leaders: the Alliance for Headache Disorders Advocacy (AHDA). According to its website, the AHDA “advocates for equitable policies for people with headache disorders.” It spearheads Headache on the Hill in Washington, DC. The 14th annual event took place March 23. The group’s website outlines the many initiatives currently underway. The AHDA encourages those who wish to lend support to donate, follow it on Facebook and Twitter, and download a flyer to distribute.
Participate in Fundraising
Take part in the Association of Migraine Disorders’ Research Is Hope campaign to raise $200,000 for migraine research. You can help by donating money yourself, by starting a Facebook fundraiser and encouraging your friends to donate, or by sharing messages and images (samples are available on the campaign’s webpage) on Twitter, Facebook, or Instagram. For social media posts, be sure to tag @migrainedisorders and use the hashtag #ResearchIsHope.
Share Your Story and Tips About Living With Migraine and Headache
If this awareness month is about anything, it’s letting people know they are not alone. Those who live with headache disease come from all walks of life, such as Emmy-nominated comedian and producer Whitney Cummings, who spoke at last year’s Migraine World Summit Onstage event. Everyday Health talked to the Two Broke Girls cocreator about her own struggles with chronic migraine.
The Migraine Diva, from blogger and advocate Jaime Sanders, is recognized as one of the top headache and migraine blogs. Sanders walks readers through her own struggles with chronic migraine and more.
CHAMP has collected a sizable list of online communities to join. The list includes both CHAMP and non-CHAMP member communities. Click here to check it out.
Get Involved in Research Studies and Clinical Trials for Migraine and Headache
If scientists are to improve the lives of those who live with migraine, they need volunteers with the condition for clinical trials. ClinicalTrials.gov offers a searchable database of ongoing and completed clinical trials, including roughly 1,000 that come up from the search term “migraine.”
Here are a few ongoing trials currently recruiting.
Telehealth Behavioral Migraine Management
Conducted by the Albert Einstein College of Medicine in New York City, this study seeks to “develop the protocol and obtain feasibility and acceptability information for Telehealth Behavioral Migraine Management.” Participants will undergo a 12-week protocol that includes an app-based headache diary, an online patient manual, and four 50-minute telehealth sessions.
Dexamethasone for Migraine-Dose Comparison
Montefiore Medical Center in New York City is conducting this study to compare the effects of different dosages of the steroid dexamethasone on acute migraine.
Vagus Nerve Stimulation and Stress Reduction Training for Migraine
Sponsored by Massachusetts General Hospital in Boston, the study “will evaluate a combination [of] transcutaneous vagus nerve stimulation and stress reduction training for migraine.”
Sharing Resources to Help People With Migraine and Headache
CHAMP offers a collection of financial assistance guides for those who need help paying for certain treatments. These guides provide information about manufacturers’ copay programs, but be sure to take note of the following disclaimer also posted on the main guides page: “Please note: These guides have not been produced or approved by the manufacturers. CHAMP is not endorsing the use of any treatment over another, nor promoting the use of any medications or devices for everyone with migraine or cluster disease. Every patient needs to consult their healthcare provider to determine what treatment options are right for you.”
Other Ways to Take Action on Migraine and Headache
There’s an App for That
Plenty of useful apps exist for iOS and Android to help you better manage headache and migraine disease, including Migraine Buddy, Migraine Monitor, N1-Headache, and Migraine Trainer from the National Institute of Neurological Disorders and Stroke. Some apps are entirely free, while others include in-app purchases.
I have been using Zoom for my ACPA support group meetings since the start of the Pandemic. I followed the Zoom recommendations for security (as they evolved) because I feared Zoom bombers. Although any platform will provide the “contact” we should have as facilitators, I have been satisfied with Zoom and have not had any problems with Zoom calls, Zoom meetings or Zoom webinars (so far).I think the simplest and best one-step security I have made is to use a different meeting ID and passcode for each communication.
What do you think is a good security measure to protect the integrity of your ACPA support group meetings?
Chronic low back pain is one of the most common forms of chronic pain among adults worldwide; according to the Global Burden of Disease Study 2010, it ranked highest in terms of years lived with disability among hundreds of conditions. National Health Interview Survey data indicate that 20 percent of adults in the United States reported “frequent” back pain and 28 percent experienced low back pain that lasted one or more days during the previous three months. Current chronic low back pain treatment options are ineffective, which has led to an increased use of opioids.
About the Program
The Back Pain Consortium (BACPAC) Research Program is a translational, patient-centered effort to address the need for effective and personalized therapies for chronic low back pain. It will examine biomedical mechanisms within a biopsychosocial context by using interdisciplinary methods and exploring innovative technologies.
The BACPAC Research Program will develop an integrated model of chronic low back pain by:
Using deep phenotyping to characterize people with chronic low back pain to improve understanding of the complex mechanisms underlying the condition
Identifying novel pathways and targets for intervention for the development of new therapeutic options to reduce pain and improve function
Developing precise diagnostic and treatment algorithms and then testing and refining them in clinical trials using new interventions and/or combination therapies so health care providers can tailor therapies to patients
Combining data from translational research and Phase 2 clinical trials to deliver an integrated model of back pain
Summer has not exactly taken us by surprise. We expected it to happen. Yet, the sudden arrival continues to catch us off guard. One day, we are wrapping protective covers around our tender plants, guarding against a cold snap that threatens their existence. The next we’re sweltering in Summer’s triple-digit heat/humidity, watering those same plants now drooping from drought.
Unlike a puzzle, which grows simpler with each additional piece of information, we are in a “season” of global mystery. The daily news adds to our confusion/uncertainty, not only of what’s going on but also what to expect next. Hope rises as COVID-19 restrictions are eased. Stress hormones, however, remain at harmfully high levels, as the world becomes more violent. Instead of Life being a puzzle that we can resolve with wisdom gained through time, it feels more like a mystery that only grows deeper.
Before we lose ourselves in that deepening mystery, let’s STOP. Take a slow breath. Let it out with a sigh or a cry or a scream; then, breathe again.
It won’t cure COVID. It won’t bring about world peace. It will, for just a few moments, halt the production of stress hormones in your body. We have been on high-alert levels of stress hormones for too long. We need to remind the brain/body of our personal levels of “normal”. Otherwise, the abnormal becomes the “new normal”, and senseless violence replaces human compassion. Peace is an “inside job”. It begins inside your own mind. It will NOT end global madness, cure cancer, feed the hungry, solve world mysteries. It WILL, however, ease your mind to some degree — all without drugs, alcohol, pills, potions.
STOP. Breathe. Sigh. Repeat. Side-effects could include inner peace. Now isn’t that a puzzle worth piecing together? It’s not “rocket science”, folks. It isn’t expensive or difficult to do. Your brain/body will thank you for it.
Last Week’s Challenges: (A) Whose philosophy is it? “It’s not how much you spend, it’s how much you make. … It’s not for using; it’s for giving.”
ANSWER: Ron Poeil, the Ronco king.(B)
What multibillion-dollar business did he create?
ANSWER: Veg-o-Matic … with the financial help of the Alcoa Corporation. If you remember those old TV commercials, you’ll recall several of his o-Matic inventions … choppers, dicers, cookers, etc. You may also recall that the Alcoa Corporation backed larger interests, such as early space-exploration, satellites, and cell towers that provide us today with phone/Internet/TV services, and larger endeavors such as drone warfare.
Who got the answers? Peggy-F and the family! Congratulations, and how impressive that you are the consistent winners in the weekly challenges.
All things are connected. In this current world-wide web of staying socially connected, let’s not lose connection with our internal “normal” conditions/connections. Sustained high-levels of stress hormones can either take a lethal toll or harm vital organs. Stop the o-Matic internal cycle that will slice-n-dice your inner world to bits. Take a “commercial break”. Even a short break is beneficial. Remember who you were and how you were before all the outer world-madness erupted. Breathe.
To paraphrase the king: “It’s not how much stress you can take, it’s how you manage your own body’s responses. Your health is not for abusing; it’s for normal living.”
This Week’s Challenges:
Household products, commercial messages, generational brand-loyalties — these are referred to as “psychological furniture of our lives”. Things that we surround our day-to-day lives with in a mostly unconscious way. Why do you buy that particular brand of mayonnaise or hair-color product or toothpaste or … ? Was it the brand your mother used? Did the commercial jingle stick in your head and replay itself as you walked the aisles of the grocery store?
Challenge A: What “psychological furniture” inhabits your home?
Challenge B: Why?
Challenge C: If our “psychological furniture” is chosen for familiarity, what other types of psychological furniture are we unconsciously gathering as daily violence becomes increasingly familiar?
Let’s give ourselves the gift of inner peace. If only for a moment, let there be a peace-filled breath made, with conscious intent. It’s a commodity worth creating. It’s a value that we need to furnish our minds with; and a gift to self that gives to others. Better than any multi-billion dollar business, eh?
Stay safe. Stay kind. Stay as self-calming as possible, moment-by-moment. It’s furniture for the mind that your brain/body will thank you for! Gentle hugs/much love,