In this post, I share what is in my MCAS rescue kit. When you have a complex chronic illness like Mast Cell Activation Syndrome (MCAS) it is essential to be prepared for symptom flares. For me, it is crucial to plan ahead for situations when my symptoms start to spiral out of control. That way I can get ahead of the flare and curtail the worst symptoms from happening.
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Table of Contents
What is a Rescue Kit?
A rescue kit is a bag or pouch you carry when you are away from home with the essential supplies to deal with your typical symptom flare. I like this case from The Mighty. You can throw it in a backpack, or even a cooler (in hot or cold weather) to make sure it maintains an even temperature, or you can use the included ice pack to make sure refrigerated meds stay viable. What your rescue kit is made of and what you put in it is going to depend on your rescue plan and the needs for those medications.
What do I carry?
Here are the basics I keep in my rescue kit:
- Set of Epi-pens – just in case. So far I have never needed to use it, knock on wood. But I feel a lot better having it with me.
- Medications and Supplements – specific to my rescue plan. You should develop your rescue plan with your doctor or MCAS provider. My first line of action in a symptom flare is D-Hist. When I start to notice facial flushing (sometimes I have to check with my phone camera if I’m not sure) I immediately take a D-Hist. So I include a small plastic pill-size Ziploc pouch of a dozen or so Ortho Molecular Products D-Hist capsules. My second step in a flare is to take Claritin, so I have another little pouch of about a dozen Claritin pills. Then I have several other pill pouches containing the regular MCAS supplements I take with each meal, in case I happen to be out of the house at mealtime and am unprepared. For me, that is Vitamin C, Turmeric, Seeking Health Histamine Block, NAC, and a Leuteolin/PEA/Quercetin capsule. I plan to post a blog specifically about my daily supplements and will share more about brands and the reasons behind them there.
- Other supplies – Gloves, wipes, tissues, hand sanitizer, bandaids, an extra face mask, etc.
- Pain reliever – Aleve and Ibuprofen. I try not to take them, but sometimes it is necessary.
- An extra Mickey Button for my daughter’s g-tube. This is a caregiving item for my daughter because it’s just good to have one along in case her tube gets pulled out. I also carry a few of my daughter’s main medications for similar reasons. Once a caregiver, always a caregiver.
- A snack bar for an accidental blood sugar crash.
What is MCAS?
Mast Cell Activation Syndrome (MCAS) is a chronic condition that affects all organ systems. MCAS is serious and disabling and people with MCAS experience often significant and debilitating symptoms daily, including anaphylaxis, which can be fatal.
MCAS is often found in combination with other chronic conditions such as Ehlers-Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS).
Frequently healthcare providers do not know about MCAS, and the tests for MCAS are problematic because they are not uniformly reliable. MCAS can be difficult to manage. Treatments include blocking mast cell mediators with anti-histamines and mast cell stabilizers, as well as avoiding triggers.
Check out this post on how to manage MCAS.
The bucket theory
The bucket theory offers a helpful analogy for understanding symptom reactions with MCAS.
Think of your body as an empty bucket that you want to keep from overflowing. Different foods and activities fill your histamine bucket at different speeds but they combine to form the total level of histamine in your body (how full your bucket is). A fuller bucket means you have more histamine symptoms. When you manage triggers, reduce exposure to known triggers, and take medications and supplements to reduce histamine, you can manage the level of your bucket.
Know your typical symptom progression
Knowing your symptom progression in a symptom flare is the key to developing your own rescue plan. In this post, I discuss how to determine your own symptom progression. Once you know what typically happens in your symptom progression you can design a rescue plan to address those symptoms.
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The Safe and Sound Protocol (SSP) is a listening therapy based on Polyvagal Theory that helps heal nervous system regulation. Many people with MCAS have nervous system dysregulation stemming from infections, toxic exposures, concussions, and trauma. The SSP is an easy-to-use app where you listen to specially filtered music for 30 minutes each day for a 5-hour cycle. Studies show the SSP has a profound effect on mental health and chronic conditions
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Disclaimer
The preceding material does not constitute medical advice. This information is for information purposes only and is not intended to be a substitute for professional medical advice, diagnosis, cure or treatment. Always seek advice from your medical doctor.
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