What Are Triggers?
Please, Don’t Pull The Trigger …”
A trigger is something that can set off a mast cell response and bring on symptoms of mastocytosis.
Not all mastocytosis patients have the same triggers. What is a problem for one person will be OK for someone else. You may have several triggers, but triggers will vary in intensity of their evoked symptoms. It may take a while for you to work out which triggers are a problem for you.
It will be impossible to avoid all of your triggers, but once you have identified them, there are things you can do or avoid to reduce symptoms and control your mastocytosis.
I have added a list of triggers I have found from several sources. Now, please be careful with this information:
- Believe me, if anything is variable and individual in mastocytosis patients, degranulation triggers are at the top of the list.
- You will not experience all the triggers in the list. You may never experience some of them at all.
- You will experience triggers that are not on this list, or any list available on any site, or on any list yet to be compiled.
- The fact you have reacted once to a trigger does not mean you will react to the same trigger again, although it is quite probable you will.
- The fact that you never reacted to a potential trigger is no guarantee that you will never react to it.
- The fact that you usually react to a trigger but you now no longer react to it does not mean that you never will react to it again. You may hear about de-sensitization, but it does not mean de-sensitization applies to you.
- The intensity of the symptoms is usually dose/time/intensity dependent, so more of a trigger is usually worse. A little of a trigger may not affect you at all.
- Symptoms related to triggers may be immediate, delayed by a few minutes, hours or even days. So, figuring out your specific triggers will require strong investigative skills.
- If you experience more that a dozen triggers, you'll never get to the bottom of your specific triggers unless you keep a journal.
- Don't expect to eradicate all the possible triggers. You stand no chance. Work towards minimizing the impact of the triggers.
- When you'll think you have got to the bottom of it all, things will change.
I don't wish to come across as glib, insensitive or lacking compassion. Heck, would I have spent so much time and effort building this site if I didn't care? What I am saying is that you literally need to do all the hard work for yourself. Giving you a list of triggers will only provide you with a few pointers for guidance.
If You Really Want A List, Here’s One (For What It’s Worth)
Please note this is not an exhaustive list.
- Mold (Causes airway symptoms. Sources: old tents, anything remaining damp, garages, basements)
- Temperature (Cold, heat, sudden change in temperature, feeling cold in association with menstruation and infection)
- Bacteria or fungi
- Environmental toxins
- Exercise or exertion
- Friction (also of clothing, particularly underwear)
- Room freshener sprays
- Sunlight, direct or indirect
- Hot baths/showers
- Emotional stress
- Insect bites (Wasp, Hornet, Bee, Mosquito
- Snake venoms
- Biological compounds released by intestinal worms, jellyfish (on contact), crayfish and lobster.
- Ascaris species (intestinal roundworms)
- Portuguese man-of-war
- Spines & hairs of Caterpillars
- Scents/Odors, Smoke (wood burning, cigarette, marijuana)
- Scented products
- Man-made materials
- Cosmetics/Creams containing salicylates
- Preservatives, Additives, Dyes, Artificial flavours/colouring
- Internal diseases
- Biologic polypeptides
- Pesticides – contain aldehyde -wether this is in high enough levels within foods is not testable currently . But reactions to otherwise safe commercially produced – non organic foods could contain aldehyde
- Animal Dander
- Cat and Dog Saliva
- Exotic woods
- Hair sprays
- Horse serum
- Nail polish
- Acrylic monomer
- Benzoyl peroxide
- Cetyl alcohol
- Cobalt chloride
- Estrogenic creams
- Phenylmercuric propionate
- Platinum salts
- Sodium sulfide
- Foods high in Histamine or Tyramine, Gluten, Soy, Salicylates
- Foods containing preservatives and colorings
- Spices, spicy foods
- Vinegars : made of malt, spirit, balsamic, white wine, red wine, rice, cider
- Shellfish, Any fish not fresh
- Egg Whites
- Nuts (peanuts, walnuts etc.)
- Castor beans
- Cod liver oil
Drugs (Do NOT assume your doctor will know not to prescribe these for you!)
- Aspirin and other non- steroidal anti-inflammatory drugs such as Naproxen and Ibuprofen.
- Anything which the individual is known to be allergic
- Coloring & flavoring in medications
- Cextran (used in some IV solutions and eye drops)
- Compound 48/80
- Iodine- containing radioactive dyes
- Narcotic containing analgesics:
- Codeine, Morphine, Pethidine, Meperidine, Demerol
- Neuromuscular blocking agents:
- Sympathomimetics (isoproterenol, amphetamine, ephedrine, phenylephrine)
- Polymyxin B
- Local anesthetics:
- Occlusive dressings
- Antibiotics – Mycin antibiotics
- Plasma expanders (dextran)
- CT contrast
- Tricyclic antidepressants : Patients on tricyclic antidepressants needing an EpiPen have a risk of high blood pressure and/or arrythmia (heart arythmias which are outside the normal), so these should not be given to patients with a known need for an EpiPen.
- Beta blockers : A patient on beta blockers needing an EpiPen must be very careful, as the epinephrine will have the OPPOSITE effect to the one required!
- Adrenaline can work on 2 types of receptors:
- Alpha : Lowers blood pressure and pulse
- Beta : Increase blood pressure and pulse
- If the beta receptors are blocked by the use of Beta Blockers, epinephrine which is needed to increase the pulse and blood pressure during anaphylaxis will be redirected to the alpha receptors – further lowering pulse and blood pressure.
- Narcotics – Morphine and opiates
- Mycin antibiotics – Erythromycin , Vancomycin, Streptomycin
- CT contrast
- Iodine, as in many brands of salt
- MRI contrast is safer (with pre-medication cover)
- Stearyl alcohol
- Sulfur dioxide
- Taliphatic polyamide
- Tetanus antitoxin
You might be wondering what is left that is NOT a trigger.
And you are right. There's NOTHING that should be considered as unlikely to be a trigger.
To stress the point, let me quote from a guidance paper produced by The Mastocytosis Society for the benefit of emergency room personnel:
And lastly, here's a quote from Dr. Afrin at a conference in Canada in 2011. Understand that Dr. Afrin is one of the most eminent doctors in the world dealing with Mast Cell Disease patients EVERY SINGLE DAY! :
So, in spite of Dr. Afrin's extensive exposure to MCAS patients, he is still astonished by what can reportedly constitute a trigger.