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idiopathic facial edema
by slotzkin, Feb 23, 2008 08:50PM
Hello,
I am new here and am hoping someone can help. For the past 4 years I have been having episodes of unexplained facial swelling. I have kept track and there are no patterns, that is it has happened night, day, various states, various seasons. There is also no correlation with any foods, insect bites, or environmental items that I have been able to discern. The swelling has never progressed to my airway and typically starts in the lower portion of my face. These episodes have occurred as infrequently as 1 time every 4-5 months to every 2 weeks. I have been tested many times, even while having the reaction and before receiving medication. Although it has been shown that I am having a reaction no allergens have been revealed via allergy testing with several specialists. The reaction responds slowly to steroids (both oral and shots) but the amount needed to counteract the reaction has been steadily increasing over time. I have been to numerous doctors and they have advised that they are at a loss as to any further testing or referrals and simply state that my reactions are "idiopathic." Any suggestions would be greatly appreciated since the side effects from the steroids are quite debilitating and I am completing my PhD internship and see patients myself and often work 10-12 hour days.
I am new here and am hoping someone can help. For the past 4 years I have been having episodes of unexplained facial swelling. I have kept track and there are no patterns, that is it has happened night, day, various states, various seasons. There is also no correlation with any foods, insect bites, or environmental items that I have been able to discern. The swelling has never progressed to my airway and typically starts in the lower portion of my face. These episodes have occurred as infrequently as 1 time every 4-5 months to every 2 weeks. I have been tested many times, even while having the reaction and before receiving medication. Although it has been shown that I am having a reaction no allergens have been revealed via allergy testing with several specialists. The reaction responds slowly to steroids (both oral and shots) but the amount needed to counteract the reaction has been steadily increasing over time. I have been to numerous doctors and they have advised that they are at a loss as to any further testing or referrals and simply state that my reactions are "idiopathic." Any suggestions would be greatly appreciated since the side effects from the steroids are quite debilitating and I am completing my PhD internship and see patients myself and often work 10-12 hour days.
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How are you doing now? Have you seen an allergy specialist lately?
Do antihistamine medications help in your case? Are you still on steroid medications?
It is indeed very difficult to answer your queries because of the symptoms you mention without a proper clinical evaluation and looking at the reports of the investigations done.
Has a thyroid function, liver and kidney function test and tests for hormonal levels been done?
Let us know how you are doing.
Regards.
I have the exact same problem - it really affects my day to day life as I have to call in sick often and people think i'm just faking. I've had this problem since 2002.
At the first tingle I feel, I take a big dose of both Claritin and Zyrtec and it seems to help abate the swelling, some times it stops entirely, but also sometimes it seems to have no effect. From the information I've read, I think it's the body having abnormal reactions to prolonged levels of cortisol in the bloodstream which are out of whack. I find that there is a rough correlation to my episodes with periods of low stress, and also ironically periods where i may not be getting enough sleep or water. But again, this is not always an indicator and I don't really know what causes it.
good luck