Emergency Support and Some Quick Cautions

In an emergency:

I recommend my friends always have this guide in hand when they visit an emergency room. This was originally compiled by mast cell specialists for The Mastocytosis Society when their educational materials were being edited by medical specialists.

Should you require the use of an epinephrine auto-injector, the standard recommendation is to:
1) Lie down or recline (and do NOT stand, even to use the restroom at an ER, until some time has passed since any “rebounds” of the reaction and your body has stabilized; this change of posture frequently re-triggers anaphylaxis and accompanying cardiac emergencies, but this basic recommendation is still not observed in some emergency departments. Demand the bedpan.).
2) Call for help (in case you lose consciousness or need assistance).
3) Follow the directions of your particular auto-injector.
4) Once the needle has deployed, make sure to continue to hold the injector against the thigh for longer than you think you need to.
4) Wait five minutes.
5) If symptoms are not improving, use a second dose.
6) Unless you’ve made alternative arrangements with your medical team, a trip to the ER is necessary for monitoring, both for likely “rebound” reactions and for other potential complications. You shouldn’t drive, and you may need to call an ambulance (remember the not standing up rule).


So you might have purchased a mast cell disorder, and it didn't come with return instructions. If you or your medical team has reason to suspect a mast cell disorder or common comorbidities (particularly Ehler Danlos or POTS) and you have unexplained symptoms in one or more organ systems (or you are on the 50 diagnosis path), know these things first:

1) Your triggers, symptoms, and some elements of your ideal treatment plan will be different than others you meet with the same condition, and even with similar symptoms.

2) Outside of emergencies, any new medicine, supplement, or other change should be started SLOWLY and ONE AT A TIME. Many patients try rubbing new supplements on an exposed patch of skin, for instance, emptying capsules into a small amount of water and swishing it around their mouth, and gradually working up to their particular target dose.

3) With some notable exceptions (see Triggers.) you are more likely to react to excipients than to drugs themselves. This is why it’s often necessary to sit down with a pharmacist and a number of medications’ inactive ingredient lists to find commonalities in drugs or supplements you’ve reacted to in the past. Due to the sheer number of excipients and the dangers some of them pose even to the general population, compounding (YOU choose the filler/capsule/oil, not the pharmacy) is often necessary.

4) Try not to get discouraged if your medical team is unfamiliar with your symptoms, your unusual triggers, or other oddities of this condition. Most likely, just knowing how to spell “mast cell” puts you in a position of having read more about MCAD than they have. Competent practitioners of all kinds will listen to your concerns and want to explore the possibility of this or other likely diagnoses with you, learning more on their own and referring you to specialists as necessary. Even without any kind of laboratory confirmation of elevated mediators and especially as other likely causes are being ruled out, many patients find adequate help from local physicians in securing any needed compounded meds for baseline treatment and other classes which are appropriate for their symptoms. This is in fact how most of the affected population manages their mast cell disorder.

Unfortunately, some doctors are doofuses. If you have a complex condition with unexplained, and so unaddressed symptoms and your doctor is neither willing to refer you nor explore any causes for your symptoms (whether you think it's a mast cell disorder or anything else), dump them. Sadly, the doofuses are actually as likely to tell their patients they are mast cell specialists as competent mast cell practitioners are. See Finding a Medical Provider.

5) Even with non-doofus practitioners, with either MCAD or EDS, there are important precautions your providers may not be aware of for various radiology procedures, surgeries, and so on. Many mast cell patients call to discuss this with, for instance, an anesthesiologist or radiology nurse only to be told they’re overreacting and will “be fine” without premedication, an extra look over their medical history, and so on. Afterwards, these are the patients who get the “I didn’t know that could happen” line when they wake up, in many cases, days later and, understandably, very frustrated. My advice to those who are not experiencing emergencies is to never go through with a potentially problematic diagnostic test (this isn’t to say many of these aren’t warranted, with adequate precautions) or elective procedure until you are comfortable with your team and your plan in case of an unexpected reaction or other hiccup. It’s always better to be overprepared and underwhelmed than the alternative.

6) Sadly, many patients find the psychological and potentially socially isolating effects of suffering from any complex, rare, or misunderstood condition are an even greater burden than the physiological challenges these conditions pose. Finding appropriate support with a qualified mental health provider is often important. Also important is making sure other members of your support team are working with you rather than against you.

Remember that these are most often "invisible" conditions, and many have never heard of them. Hopefully, you can provide your families and friends with helpful information (this page might help), and they will take an interest in this information and be able to accommodate your changing needs. (“It’s not safe for me to be around you when you wear that perfume or hairspray/To come to dinner when you’re cooking peppers.")

But, devastatingly, there will likely be some people you know who will not respond favorably—fair weather friends who will fade away, families who will gaslight, even spouses who are not up to...much of anything, really, and they all tend to reveal themselves as the inadequate, narcissistic, or simply not-in-the-right-place members of your support circle just as you’re facing a challenging new diagnosis or similar life crisis. This is also a period during which you’re physiologically more vulnerable; many cases “show up” for the first time after periods of stress.

The grandmother-giving-the-grandchild-a-trigger-to-prove-it’s-not-really-sick stories are neither isolated nor exaggerated. I’ve never met a complex disease patient who has made the difficult decision to either significantly limit or to entirely cut off contact with someone in their circle and regretted it.

7) For many, this is (quite understandably) also a time of desperation, for attraction to miracle cures and panic-induced purchases and practitioner visits. There are a number of very sneaky product pushers (you can find them handily in online support groups if they haven't already found you), health and system coaches, less informed nutritionists, and other individuals who, intentionally or not, are likely to take advantage of people in this situation and cause harm to those with a truly complex medical disorder. It is particularly easy, for example, to be drawn to "root cause" stories that promise comparatively easy ways to cure yourself, but which tend to endanger actual mast cell patients, leaving them in worse condition and out a lot of money and energy. When faced with a complicated new diagnosis, it is very easy to latch onto faith in these promises, especially when you meet people who mistakenly believe they have eliminated a mast cell disorder when they have in fact treated some infection, some nutrient deficiency, or some other condition mimicking it, instead. See this page.