I woke up one day about three years ago and found that my tongue had swollen to an uncomfortably large size, accompanied by a burning feeling in my mouth.
I wondered if I had bitten it in my sleep, or had some weird tongue infection? After several hours, the swelling went down. Then a week later it happened again. I went to the doctor and they suggested taking antihistamines. I couldn't talk and it was incredibly uncomfortable. I was worried, what if it happened again? I run a charity where I teach sustainability and food workshops. If I was unable to talk, I couldn't teach, and therefore I wouldn't be able to earn a living! What if it happened when I was asleep and I couldn't breathe?
A few weeks later, I woke up to my lower face being swollen out of control. My lips were swollen like they had been pumped with fluid and my entire lower jaw was puffed up beyond recognition. My lips were so swollen that I was unable to close my mouth and my swollen tongue meant couldn't stop drooling. If I bent my head down, my face throbbed as if the skin would split.
I couldn't work out why this had happened. I hadn't eaten or drank anything out the ordinary or been previously diagnosed with any strange allergies to nuts, eggs or anything like that. I was in pain and was having some trouble breathing. It was scary. I was taken to the Emergency Department of my local hospital and was treated with antihistamines, steroids and adrenalin. I kept being asked if I was allergic to something or had eaten something different, used a new face cream, laundry detergent or bedding. I answered no to all of the questions as I was asked them several times.
I was referred to the Immunology clinic that taught me how to use an Epipen (to self administer adrenalin), a truckload of medications and I was diagnosed with Idiopathic Angioedema.
Angioedema is a skin reaction similar to hives. It is characterized by an abrupt and short-lived swelling of the skin and mucous membranes. All parts of the body may be affected but swelling most often occurs around the eyes and lips.
In severe cases, the internal lining of the upper respiratory tract and intestines may also be affected. In my case, the cause is related to my autoimmune system instead of a particular trigger or cause. I'm basically allergic to myself. There is no preventative treatment beyond taking a handful of antihistamines each day, controlling stress and keeping a healthy immune system.
The most frustrating aspect of IA is the unpredictability of the illness both in the manifestations, and the frequency of attacks. Sometimes one side of my tongue will swell up, sometimes the other, sometimes all of it. My lip might swell or my top or bottom lip lips. My chin might swell or the skin between my upper lip and nose or my cheeks.
Swelling ranges from uncomfortable to extremely painful and can affect my speech significantly. It might occur at any time of day although it is most common at night. I might get three attacks in a week of varying severity and then nothing for weeks or one a week.
I have of course tried to determine a cause and excluded various things from my diet such as sulfur and red wine without success. I’ve changed household products and bedding. I make my own natural cleaning products, I eat well, I don’t use make up or chemical-laden products. None of these have made any difference. I’ve had genetic testing for Hereditary Angioedema (HAEs) but they came back negative.
People’s responses to seeing IA in the flesh can be frustrating. In the years I’ve had it, I’ve had people laugh in my face, take my photo on public transport (when traveling was to pick up medication) and heard continual loud comments about Botox. No one actually just asks why I look that way, they just prefer to stare or whisper. Sometimes it’s just easier to stay home.
Family and friends are supportive although the unpredictable nature of the disease frustrates them and me both when it leads to cancellations. People tend to say, "Again! What’s caused it this time? What have you done?" The suggestion that I have done or not done something and IA is the result makes me feel misunderstood.
What people don’t understand is how exhausted the condition makes you feel for days after each attack. I hate taking loads of antihistamines that leave me feeling tired, even the non-drowsy ones. Most of the medications are expensive which doesn’t make things any easier.
I spend a lot of time sitting upright at night watching Netflix as lying down tends to make the swelling worse. When it gets really bad and I need to go to hospital, I try to take a cab rather than take an ambulance that someone else might need. Luckily I have had excellent medical care, the doctors are great at my local Emergency Department. I tend to go alone rather than force my long-suffering husband to come along, he has a bit of a hospital phobia.
Last year I found a group on Facebook for people diagnosed with Idiopathic Angioedema and it is such a relief to talk to others who know what it’s like. Most of us have never met anyone with this condition or had heard of it before we were diagnosed. We have a lot of in jokes and it’s great to have people to share knowledge with. I no longer feel alone.
The only two things I have been able to definitely attribute to being prequels to an AI attack are having cold sores and any mouth trauma like smacking into something. I’ve been told by immunologists that there most likely will never been an actual cause that can be identified and that attacks may stop suddenly and not occur again. I look forward to that day.