My Mast Cell Activation Syndrome

Hello my Zebras and Spoonies! Thanks for coming and hanging out with me today, I’m glad that you are here. Today I am going to be talking about my experiences with Mast Cell Activation Syndrome as an installment in the “My Diagnosis” series.

Let’s start out by talking about what Mast Cell Activation Syndrome (MCAS) is, because it’s complicated.

MCAS is a condition in which the patient experiences repeated episodes of the symptoms of anaphylaxis – allergic symptoms such as hives, swelling, low blood pressure, difficulty breathing and severe diarrhea. High levels of mast cell mediators are released during those episodes. The episodes respond to treatment with inhibitors or blockers of mast cell mediators. The episodes are called “idiopathic” which means that the mechanism is unknown – that is, not caused by allergic antibody or secondary to other known conditions that activate normal mast cells.

American Academy Allergy Asthma and Immunology

There are some theories as to what is causing all of this to happen, but they are still in the process of researching this. But this unknown factor really is one of the biggest challenges to having this disease. The money being invested in the research on this is going into figuring out how it works which is an essential first step. That means that there really isn’t any well established treatment plans. The treatment suggestions out there are based on expert opinion. While those opinions have value, it isn’t as good as having research on it.

The first signs of an anaphylactic reaction may look like typical allergy symptoms: a runny nose or a skin rash. But within about 30 minutes, more serious signs appear.

There is usually more than one of these:

  • Coughing; wheezing; and pain, itching, or tightness in your chest
  • Fainting, dizziness, confusion, or weakness
  • Hives; a rash; and itchy, swollen, or red skin
  • Runny or stuffy nose and sneezing
  • Shortness of breath or trouble breathing and rapid heartbeat
  • Swollen or itchy lips or tongue
  • Swollen or itchy throat, hoarse voice, trouble swallowing, tightness in your throat
  • Vomiting, diarrhea, or cramps
  • Weak pulse, paleness

Some people also remember feeling a “sense of doom” right before the attack.

Symptoms can move to shock and loss of consciousness.

As many as 1 out of every 5 people may have a second anaphylactic reaction within 12 hours of the first. This is called a biphasic anaphylaxis.

Needless to say, this is pretty scary stuff. Especially when there are a lot of chronic symptoms that come with having MCAS that include itching and nausea. For me, things generally start out with a runny nose, itching and just feeling unwell. The first place to itch is almost always my lips. Then the itching gets worse and spreads to a larger area or onto more areas. I feel weak and dizzy. Sometimes I get a rash and swelling skin, other times I don’t. My heart rate goes up and I start feeling like I can’t get a good breath. I also often get the nausea, vomiting and diarrhea. It’s really unpleasant all unto itself, but when you add in the knowledge that this can progress into shock and can become life threatening it takes on a whole new layer. Adding anxiety into this doesn’t help, but there is no way to have this happening and not have anxiety. It’s scary shit.

The things about MCAS is that you don’t have allergies. You don’t have this thing that you come into contact with and it will trigger a reaction. Instead it is about reaching critical mass. Histamine is a major factor in all of this. When you reach a point of having too much histamine in your body, you start having symptoms. Many things can increase your histamine levels. So, managing MCAS is about managing and mitigating the histamine release in your body. That means reducing stress, avoiding high histamine foods, limiting left overs, taking medications that reduce the histamine and avoiding any individual triggers are key factors.

Because MCAS is about having too much histamine in your body, everyone that has MCAS also has histamine intolerance. By definition, histamine intolerance is when you have too much histamine in your body and thus are having symptoms but are not reaching the point of having an anaphylactic response.

Histamine is associated with common allergic responses and symptoms. Many of these are similar to those from a histamine intolerance.

While they may vary, some common reactions associated with histamine intolerance include:

  • headaches or migraines
  • nasal congestion or sinus issues
  • fatigue
  • hives
  • digestive issues
  • irregular menstrual cycle
  • nausea
  • vomiting

In more severe cases of histamine intolerance, you may experience:

  • abdominal cramping
  • tissue swelling
  • high blood pressure
  • irregular heart rate
  • anxiety
  • difficulty regulating body temperature
  • dizziness

Many of these symptoms overlap with anaphylaxis. That’s because histamine intolerance symptoms are the precursor symptoms to the anaphylaxis. The layers of complex symptoms can sometimes make it difficult to tell when you should use your epi pen or when you should seek medical support. And that unto itself is very anxiety provoking. I personally have epi pens and try to remember to carry both with me where ever I go. But my ADHD often gets in the way of that. Just realizing that you don’t have your epi pen with you can be anxiety provoking. It’s easy for your brain to go into “what if?” mode.

I live with the symptoms of histamine intolerance on a daily basis. Headaches, congestion, fatigue, itching, digestive issues and nausea are common occurrences. I have well controlled migraines at this point, but they are definitely a thing in my life. This is the same for an irregular menstrual cycle. I have never been that regular. So, I struggle with this stuff all the time.

Incidental exposures are super common and all too easy to occur. Incidental exposures are when you accidentally encounter a triggering substance with no intention of doing so. For me this is often bleach. If my histamine levels are ok, then I will just go into having histamine intolerance symptoms. But if my histamine levels are already high then this kind of exposure can mean going into an anaphylactic reaction. We can control our environments when we are home and make sure that these kinds of these are not around us there. But we have no control once we leave home. And there are times that visitors accidently bring triggering items into your home with them.

It is this lack of control that is so scary about this. There is no way to factor in everything that can increase my histamine levels and avoid every trigger every day. There are going to be exposures. There are going to be stressful days. And no matter how good the regime is, there are going to be episodes that go fully into anaphylaxis. And each one of these episodes is life threatening. So, yeah. It’s stressful stuff. And just thinking about it too much can increase my histamine levels. That’s how wild this stuff is.

Well, that’s about it for my rambling today. Thanks for coming and spending some time with me. If you like what you read, click on that like button. It really does help! Until we talk again, you take care of yourselves!

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