chronic idiopathic angioedema

Long Term Care Columnist / Guide · Sep 2, 2003

This is the question I'VE been wanting to ask. My sister, who lives with me and my family, has had several episodes recently of what the doctors think is angioedema---the most recent of which was especially scary, as her tongue and throat swelled up (I was afraid she was going to lose her airway, so I called 911) and she had to stay overnight in the hospital. No one knows yet what precipitates it, although eating chicken is the common thread linking all three episodes. She hasn't had a recurrence since she stopped eating it, but then, it's only been 5 days since the last one. I hope somebody out there has dealt with this before, she's scared spitless, and I'm worried too because this last one was a pretty close call.

Brownms46 · Sep 2, 2003

mj sorry to hear about your sister! I have never heard of this before??? I sure hope someone responds who has:).

Long Term Care Columnist / Guide · Sep 2, 2003

Thanks, Brownie. The ER doc who treated my sister told me that he'd only seen a few cases in his entire career, and he's been in the business since God was a boy. Of course, we all live in a small city where you don't see much in the way of rare diseases, and maybe the EENT will be able to come up with some explanation. They did a C1-esterase test, which is supposed to tell us if she's deficient in a certain protein, but it's performed so rarely here they had to farm it out to a lab in Eugene. We'll find out tomorrow what, if anything, it shows.

Home Health Columnist / Guide · Sep 2, 2003

Good article + photo's:

http://merck.praxis.md/index.asp?page=bpm_tabfig&article_id=BPM01AL08

Brownms46 · Sep 2, 2003

Originally posted by mjlrn97
Thanks, Brownie. The ER doc who treated my sister told me that he'd only seen a few cases in his entire career, and he's been in the business since God was a boy. Of course, we all live in a small city where you don't see much in the way of rare diseases, and maybe the EENT will be able to come up with some explanation. They did a C1-esterase test, which is supposed to tell us if she's deficient in a certain protein, but it's performed so rarely here they had to farm it out to a lab in Eugene. We'll find out tomorrow what, if anything, it shows.

You're welcome (((((mj)))) I'm hoping your sister will come out totally A OK! Don't have time to look at the article, but will definitely check it out when I get home.

Long Term Care Columnist / Guide · Sep 2, 2003

Thank you for the article, Karen......this was very helpful! I'll let you all know what we find out at the doctor's today.

tipsplease · Dec 29, 2009

I am a nurse and I have chronic idiopathic angioedema. The first time this happened to me was after I had three of my front teeth crowned at the same time. Experiencing this after dental procedures is not unusual. I was working in an ER at the time and the docs I worked with said that the workup was extensive and often did not explain the problem. I have had angioedema on my arms, my forehead and my torso. It starts with a tingling sensation and the area becomes hard and painful. It takes about four days for all the swelling to go away.

Many times this happens to women who are on ACE inhibitors. For this reason I would never be able to take those meds. I manage this by taking zyrtec every day. I don't dare not take it because if the swelling starts at night I can wake up with two eyes swollen shut or a mouth that looks like Snoopy's or, even worse, a swollen airway.

Hope this helps.

Kim, HHRN · Jan 31, 2010

I had an episode of angioedema. Seems like the classical textbook case effects the GI tract, the tongue, the genatalia, and the face with swelling (looked it up in my med surg book the next day). I pinpointed the culprit down to eating a food product with whey. I have had some adverse reactions before (unknowingly to whey) but this time it effected my tongue and thought it was going to affect my airway. My husband was going to drive me to the hospital. (we only live 2 miles away) However, we were in the middle of an ice storm and could not get the ice off the car soon enough. He finally made it into the car and the ice was way too thick on the windows. When I started to lose my ability to swallow, I called 911 and did not mess around. Thankfully, we live only about one mile away from the firestation and the paramedics arrived very quickly!

I hope the next time it does not effect my airway (hopefully there will not be a next time but there are so many foods that use whey, sometimes it is impossible to avoid it completely 100% of the time). I hope I can get an epi pen.