Tightening in the throat that increases by the second. The grip, like no other. Strangling. Less air pushes through. Constricting more. Will the airways close. Focus on breathing. On finding the —A wave of dizziness emerges as less air pretenses it’s self… Focus on finding the medication.
Near anaphylaxis. It has become a common occurrence although it has not yet become normal to work though. Mast Cell Activation Syndrome is one of a few new diagnosis I recently acquired.
I had hear of the disease in passing, but it was the furthest thing from my mind. When my POTS doctor asked if I had a lot of allergies I replied no thinking everyone has a list of allergies. My theory was everyone has allergies they are just unaware, which of course, is not true. Eventually, I made my way to an allergist and got conformation of my diagnosis. Mast Cell Activation Syndrome.
Defining Mast Cell Briefly
Mast cell are a vital part to our blood as they assist in the function of the immune system. They are found in many locations throughout the body. “Mast cells react to foreign bodies and injury by releasing a variety of potent chemical mediators, such as histamine, when activated. In a healthy person these chemicals will act beneficially to protect and heal the body, but in a person with MCAS these same chemicals are inappropriately triggered and released and have a negative effect on the body. ”
For someone with mast cell there are various triggers. Basically, anything at a given moment can trigger us. Many times I have been okay with a food or cream for months or year than react to it. Some triggers include Heat, cold or sudden temperature changes, Stress: emotional, physical, including pain, or environmental (i.e., weather changes, pollution, pollen, pet dander, etc.), exercise, fatigue, food or beverages, including alcohol, medications, natural odors, chemical odors, perfumes and scents venom infections (viral, bacterial or fungal), and Sun. Additionally someone with mast cell can have a reaction to themselves which is the strangest concept in my option or idiopathic reactions.
Symptoms are unique for everyone. They can be altered depending on the day or the trigger. There are many symptoms with Mast Cell.
An overview of some of the many symptoms:
- Gastrointestinal symptoms such as nausea, vomiting, diarrhea, abdominal pain, bloating, and malabsorption
- Low blood pressure
- Itching, flushing, hives
- Episodes of fainting or dizziness
- Bone pain
- Brain fog
- Rapid weight gain or loss
- Chest pain and/or a racing heart
Most individuals have an overlapping illness or a few. It is common to have POTS (or Hyper POTS) and Ehlers–Danlos syndrome. Additionally, some of these individuals have an autoimmune disease.
Treating mast cell of course comes with challenges. The biggest challenge is that many people have a lot of medication allergies. One of the goals is to calm down the mast cells. Additionally there needs to be a plan when one reacts. Some people have continuous symptoms such as pain. Than they also deal with a massive amount of sever symptoms when encountering a trigger. Due to this there are various elements of the treatment plan. Almost all people start on two over the counter medications Zyrtec and Xanax. These medications should calm cells. Moreover, other over the counter and/ or prescriptions are used to treat it.
Getting Educated and Finding Support
Like previously mentioned there are times we encounter a trigger which can result in some symptoms like itching or nausea to life threading symptoms such as Anaplhyaxis. Again treatments vary. Some use benadryl or an Epi Pen or both.
If you or a loved one have mast cell or suspected mast cell please educate yourself as much as possible because it can (and most likely will) save your life. Be sure to connect with others with this illness. Personally, I am a huge fan of Facebook support groups and there are some fabulous ones for Mast Cell. My favorite Mast Cell Facebook Support Group can be found here Mast Cell Activation Syndrome Support (MCAS only). This group has the best resources I have found to date. It also makes it easy to get educated and find support.
Need some extra information? Check out these wonderful resources:
- Mast Cell Research: http://mastcellresearch.com/
- The Mastocytosis Society https://tmsforacure.org/
- Mast Cell Activation Syndrome: The Immune System Gone Wrong https://www.drlam.com/blog/mast-cell-activation-syndrome-the-immune-system-gone-wrong/32795/
- Mast Cell Activation Disorder | Diagnosis Discussionhttps://www.youtube.com/watch?v=iYje4mmh5mk
Living with EDS: Mast Cell Activation Syndrome
What are your tips for living with Mast Cell?
*Please note this is a very brief overview of this disease. Many medical professionals are not fully educated. Please subscribe to be notified when the next mast cell post comes out.