Better understanding the HAE attack triggers in our lives

Hereditary angioedema (HAE) is an interesting disease. My personal experience is that it can be very unpredictable.

I’ve experienced a plethora of unusual, seemingly random, and unexplained symptoms throughout my life. Since childhood, I’ve had unexplained rashes, respiratory issues, and gastrointestinal complaints. Looking back, I think they might’ve been symptoms of HAE.

Throughout my adulthood, I’ve had a great deal of food sensitivity as well. I acquired several diagnoses that might explain it, including gastritis, Lyme disease, mast cell activation syndrome, irritable bowel syndrome, and angioedema. Figuring out which foods I can eat and which to avoid has been a matter of trial and error.

It’s been a few years since my HAE diagnosis, and I thought I understood most of my triggers. Then I learned about prodrome symptoms, which can precede an HAE attack. I’m still learning my personal prodromes and trying to be sensitive to their warnings.

External factors can also set off an HAE attack. For me, these include vibrations, usually when traveling in a car, plane, or boat. Proximal vibrations from large machines or equipment nearby can also trigger an attack, which I learned through personal experience.

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Remaining vigilant

Another trigger I don’t see discussed much are intimate sexual relations. I recently put the pieces of this one together and realized that they’re sometimes a trigger for me. Since most of my HAE attacks are abdominal no matter the cause, it took some time for me to figure this one out.

Over the years, I’d noticed that occasionally after or during intimacy, I’d sporadically start to cry. I thought it was probably due to an overwhelming emotional experience or even processing past trauma. But crying for no apparent reason can actually be a prodrome symptom.

I also noticed that I’d sometimes experience my typical abdominal swelling after sexual relations. But it was hard to understand, because if we’d been out to dinner or a movie, maybe I ate something that triggered me. If we were on vacation or at a hotel, perhaps travel was the trigger. If I’d been on an outdoor excursion, physical exertion could’ve been the catalyst. Even weather fluctuations and extreme temperatures can affect HAE. So how was I to know which had caused a reaction?

As I began researching the topic and better understanding my prodrome symptoms, I learned that sexual encounters can indeed cause an HAE attack. Thus, I became more aware of and vigilant about my reactions. I’m now more careful to take the time to assess my body for precursor signs of a swell and always keep my rescue medication with me.

Like so many other aspects of our lives, the closeness and pleasure of intimate relationships should be a source of respite and emotional release, not a catalyst for pain and swelling. This caused me great consternation at first, but then I realized that it wasn’t much different than regretting being unable to travel or eat my favorite comfort foods. I’m determined to weigh the consequences and plan accordingly. Fortunately, I also have a very supportive and understanding partner and caregiver.

I hate to be the bearer of the bad news that sex can be an HAE trigger. My goal is to share my own experiences so that others can be informed about HAE and hopefully avoid attacks.

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.