Originally Posted by Bryanna
I know of a condition called Angioedema that affects approximately 1 in 10 people to some degree at some point in their lives, but mostly women. The one common symptom that is associated with various forms of this condition are a sudden swelling that can occur anyplace in or on the body. These swelling episodes are often misdiagnosed and can be triggered by a number of things including hormones. It may be worth discussing with her doctors. Here's a link to Angioedema...
I hope this information is helpful to you.
I would like to clarify the statistic on that link given.
Angioedema is much more uncommon than 1 in 10. The stats I found were 1:50,000. (for hereditary angioedema). This may change with more awareness and better diagnosis of people who inherit this.
here is the quote from the link:
Angioedema is not rare. Around 1 in 10 people will develop urticaria (hives) at some time in their life and around 1 in 3 of these will have angioedema as well. Having angioedema on its own (without urticaria) is much less common.
Hereditary angioedema does not have hives as a rule, or bruising dark discoloration, and typically has more common GI attacks. More like once a month or more.
But alot of people do get hives as children. That is also called angioedema. However, hives may respond to antihistamines, which hereditary angioedema does not.
There may be a pink to redness discoloration with the swelling, that is oddly shaped, but does not last long.
This is a better link:
This is another thorough link:
This link goes into more detail about the various types including the estrogen triggered type.
The reactions women have around the menses, is because of a FALL in estrogen levels. Estrogen is highest mid cycle.
The falling estrogen at the start of the menses, also will trigger women with certain sensitivities, to pain... migraines(and other severe headaches) will occur at this time. And in seizure prone women seizures will happen when the estrogen falls at this point. Those are called catamenial seizures.
There is an interesting graph on this link.
The connection to angioedema and estrogen is when excess or high levels are present, there can be more "attacks" of swelling.
This happens with birth control pills, and hormone replacement therapy. In fact estrogen triggered angioedema is treated with androgens in women patients. So at the time of the beginning of the menses, the estrogen is falling and low and less likely to trigger HAE.
It is pretty complicated...and as the first link I gave here, suggests to the doctors reading it, the patient should be referred to an immunologist for evaluation. The blood tests are complicated and there are slight differences in complement levels and C1 inhibitor levels for the various types of angioedema.
The reason I know this, is because I had a crisis of acquired angioedema recently (from a high blood pressure medication), and a lifelong history of GI attacks and attacks following invasive procedures and tests. After I recover from this serious episode, I will be going to the immunologist for further evaluation. But my internist is pretty sure I have HAE. Mine is mostly GI attacks, with only some swelling, and some breathing compromise. Some people have serious breathing episodes which can be deadly. I don't see any mention here of the original poster's daughter having breathing issues.
When a patient has unusual symptoms, it is really imperative
to think outside the box, once obvious disorders are eliminated.
These tend to be genetic in origin for the most part.