Why understanding our triggers is important in angioedema

Living with hereditary angioedema (HAE) can be interesting at times. There are the standard and obvious symptoms, the most common being internal and external swelling. Then there are the non-swelling symptoms, such as dizziness, hives, nausea, and more.

Learning the individual triggers can help us better understand these symptoms. Our family experiences four types of angioedema: acute allergic angioedema and HAE types 1, 2, and 3. My eldest daughter has allergic angioedema and, fortunately, doesn’t require medication.

My adopted daughter, Leah, who has hereditary angioedema type 2, was the first in our family to be diagnosed. She primarily has experienced internal swelling, including vascular inflammation and the dangerous symptom of esophageal swelling, which can block a person’s airway and hinder breathing.

Recommended Reading

September 13, 2024 Columns by Danita LaShelle Jones

When symptoms — like movies — are similar but different

I was diagnosed with HAE type 3 two years ago. My primary symptoms are gastrointestinal and vaginal swelling, although I also experience occasional ankle and knee swelling, typically when traveling.

My oldest son, Dorian, was diagnosed last year with HAE type 1. His swelling is external and usually occurs on one side of his body. The first incident involved swelling on one side of his face, leading the dentist to suspect it was from teeth grinding. He later experienced swelling in a lower leg among other symptoms, which ultimately required testing that resulted in a diagnosis.

An unbearable trigger

Many factors can trigger HAE symptoms. I’ve frequently written that my major trigger is stress, such as physical stress from overexertion, positive stress from hosting events, and negative stress caused by worrying.

Recently, we faced an unusual situation that highlighted a different symptom we hope never to experience again. During renovations at our home, the workers caused a lot of noise that became increasingly irritating, especially because I work from home. One day, they used a specific tool that produced an unbearable, high-pitched sound that even affected the animals.

Each of us living with HAE checked in with one another about any symptoms. Leah experienced worse migraines that required emergency medication, along with nausea and lower back pain. I felt severely exhausted, had general malaise, and experienced lower back pain. Dorian, who usually works outside the home, also noticed lower back pain that day. Surprisingly, even our elderly cat was affected, having accidents and hiding. Meanwhile, my incredibly healthy husband was completely unaffected.

While I know that vibrations can trigger HAE symptoms, and I personally feel more discomfort when traveling by car for long periods, I’d never encountered anything like this before. We recognize that vibrations, even from dental work, can activate HAE symptoms; however, this noise was much louder and lasted longer than anything we had ever experienced. It was truly bizarre!

It took about 24 hours for all of us to return to normal. Thankfully, our cat is also back to her usual self.

Living with a rare disease presents daily challenges. Fortunately, we are in an era with access to medications and other treatments, making most days more manageable than for previous generations. However, unusual incidents will always arise, so don’t be taken by surprise. Hang in there, and may you experience plenty of good vibrations!

Note: Angioedema News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.