Aa
A
A
A
Close
Allergy Community
10.3k Members
Avatar universal

Angiodema?? (swollen tongue, lips)

Hi, I'm new here. Just about 2 months ago I began developing strange allergic reactions. They have occurred on my feet, hands, back of knee, upper thigh, lip and now tongue. I have gone to the doctor before and they said it was contact dermatitis. I have not figured out what I'm allergic to yet and am still waiting for a call back from the allergy department. Last night, I woke up at about 3am with a swollen tongue. It really freaked me out. I took 2 Benadryls and thankfully it went down almost back to normal within a couple of hours. When it happened on my lip, it swelled to the size of a grape and the Benadryl took FOREVER to kick in.

Anyway, I went to the doctor this morning and she said swelling like this (tongue, lips) is called angiodema. She said if I continue to expose myself to this allergen (whatever it may be) the next stage could be anaphylaxis.

I'm really scared. I have 2 little kids and I'm terrified of something happening. I can't avoid the allergen if I don't know what it is.:(

Please help.

Thanks,
Becky
148 Responses
Avatar universal
Poor you! My son is anaphylactic (eggs, milk & every nut on the planet) and he has regular blood tests and skin ***** tests to assess his current level of reaction to his known allergens and assess possible further allergy to new substances. The new substances are introduced one at a time and include allergens known to be linked to his existing ones (like sesame seeds, lupin flour, latex etc). I find it amazing that your doctor accepts you are having a serious allergic reaction and warns you anaphylaxis could be next but does nothing to help you establish what is causing the oedema in your mouth & elsewhere! She should refer you to an allergy specialist for further testing; any reaction as severe as yours, especially involving swelling of the tongue, should be taken extremely seriously. In the meantime, while you undergo testing, you should be given an Epi-Pen (that's what we call it in the UK, it's an auto-injector of adrenaline/epinephrine you carry with you at all times and will save your life if administered before/during anaphylaxis.I think you call it Anapen in the USA).

For your doctor do anything less would be negligent in my opinion. Had your tongue continued to swell, you might well have choked...see your doctor again as a matter of urgency and insist on testing to help you establish what you're allergic to and get an Anapen prescription IMMEDIATELY. Allergies are unpredictable and the next attack could well be very serious indeed. Good luck.
Avatar universal
Hi,

I have tons of allergies, but, the only thing that ever caused the swollen lip thing with me was antibiotics.  Penicillan and cephalexin can cause that, even delayed.  It takes months sometimes to get it out of your system.  
Avatar universal
I'm 28 years old. I've been having allergic reactions since my freshmen year highschool. I have learned alot. The swelling of the upper and lower lip, tongue, hands, feet, eyes, fingers, and rashes that can appear anywhere on your body I believe are caused by stress, nerves, anytype of flu syptom, weather change, not enough sleep, to much sleep, hangovers, anxioty, and muscle pain. The swelling is uncontrolable when started. I miss work due to the reactions. I've lost jobs due to the reations. I've been to the best specialist around my area. I've tried perscriptive steriods, and every allergy medicine there is. When ever I swell up it seems like I have to let it run it's course before I can put ice on it. Therefore I miss more work. I can't have that anymore. If there are any questions, or if anyone knows how to control or stop this angiodema, please reply to my comment.

Thank You
Jay
Avatar universal
I'm 28 years old. I've been having allergic reactions since my freshmen year highschool. I have learned alot. The swelling of the upper and lower lip, tongue, hands, feet, eyes, fingers, and rashes that can appear anywhere on your body I believe are caused by stress, nerves, anytype of flu syptom, weather change, not enough sleep, to much sleep, hangovers, anxioty, and muscle pain. The swelling is uncontrolable when started. I miss work due to the reactions. I've lost jobs due to the reations. I've been to the best specialist around my area. I've tried perscriptive steriods, and every allergy medicine there is. When ever I swell up it seems like I have to let it run it's course before I can put ice on it. Therefore I miss more work. I can't have that anymore. If there are any questions, or if anyone knows how to control or stop this angiodema, please reply to my comment.

Thank You
Jay
Avatar universal
I can't tell you what you have, but I can tell you my problems.  For about 10 to 11 years I have this problem of bumps showing up on my skin.  They are warm to the touch, and are raised.  They usually go away over night.  Once in awhile half of my lip will swell 3 to 4 times norm size.  My knees swell.  I have even had these knots on the bottom of my foot.  One of the strange ones is that my finger tip will swell.  About one month ago I had surgery, and it made my body go into over drive.  One day I had about 100 bumps.  Went to the doc.  He gave me predizone.  Didn't really help.  Also they tell me to take claritin daily...doesn't help.  Once or twice my complete hands will swell.  Funny thing is that when I was pregnant with both kids, I had not one problem the whole nine months.  They did return though afterwards.
Avatar universal
The only thing that completely stops an angioedema attack for me is a shot with an epipen. Benedryl doesn't touch it, Allegra slows it down and Zyrtec had been preventing it until I came down with the flu last week and my resistance to such things was lowered. My upper lip is swollen today; I've taken a megadose of Allegra (360 mg) which may have slowed down the swelling (hard to know for sure). I'm weighing whether or not to go the epipen route and will decide later today depending on how much worse it gets.
My angioedema doesn't seem to have a specific cause although I suspect stress has something to do with it. I've had food allergies in the past but after keeping track of my diet and activities there doesn't seem to be a link.
The best my allergist can come up with is to treat the symptoms as they occur. I'm seeing a naturopath for some other things and will discuss this with her at my next appointment.
Avatar universal
I've been suffering from angiodema for the past 3 years. It mainly affects my lips and tongue and usually occurs in the middle of the night. I've been on many different medications- zyrtec, allegra, doxepin, zantac, atarax. The doxepin when taken in higer doses makes me drowsy. Currently my reactions have become more severe- lasting for 2 days. I've been to 2 allergists who can't find out what the problem is Last year I was diagnosed with histoplasmosis, which is a fungal infection. I suspct my histo may be linked to the swelling of my lips and tongue. Has anyone else been affected with histoplasmos and was it linked to angiodema?

Lashonda
Avatar universal
   I too am having problems. Over the past year half of my tounge has swollen four times and half of my bottom lip has swelled three times. I have been to the emergency room three times just to get the swelling down. They usually give me some steroids and benedryll. I have had blood tests and they say it is not angiodema. I feel like it is stress related but I need to get this under control. The swelling has not affected my breathing because it is just half of my tounge. Can someone give me some suggestions. I have also had blood tests to find allergies and really not found anything. Should I go to an allergy specialists ? Thank you and God bless.
Avatar universal
I'm with my second allergist and I still do not know why what causes my swelling. Currently I am taking antihistamines- Zyrtec, doxepin, allegra, and zantac on a daily basis and still having problems with swelling. My doctor wants me to go on a low doseage of prednisone (5mg) to take every other day.
Are you on any type of medication and have you been checked for any autoimmune diseases? My allergy doctor told me that they may never know why the swelling occures which they call "chronic idiopathic uticaria."

Midwest99


Avatar universal
I have been sufferiing now for 2 yrs, my lip swells , tongue does 2 .I get it in the day or night , i know what I think it is but all my allergist say is that I test neg. to everything , now do you believe that? I have been very allergic to steer, cows , the animal ,( not the meat ) & they gave me a series of shots that was yrs. ago now he says that they don't do that anymore , I have since told him where to go as i have been so distraught about it but don't know to whom to go too , I need a dr that will give me the series again ...... It comes in the air or anywhere & sometimes i can smell it ...... I live in a 55 yr old retirement resort & have noticed that there seems to be many cows in the overall area around us, we have lived here for 13 yrs & only lately has it come about ,I live in florida , & would love to be able to go out , I am allergic to prednisone or anything like that so can't take that ... help if you can
Avatar universal
I'm a 54 yom, and have been having these type of incidents the past 3 years. The 1st time it was the lower lip, and I thought that it might be stroke related as it also felt numb. I rushed to my Dr, who did some tests, but was unable to determine the cause. I have since had the swelling in 1/2 the tounge, the whole tounge (no problem with breathing thankfully), 1/2 my face (cheak) which was painful, and the the most recent one, started in the lower centre lip and over the course of 2 days worked its way from left lower around to the top right and back down. Now how, can an alergic reaction cause that?

DScot      
Avatar universal
I have had the same symptoms as many of the others who have posted - various parts of my face, especially lips and tongue, sometimes eyelids or chin, swell up to painful proportions for no apparent reason.  I also sometimes get unexplained and very itchy hives on my body.  It usually takes roughly 18 hours for it to disappear entirely, sometimes less if I take enough Prednisolone early enough.  Unfortunately, I've had this condition for more nearly 15 years, with a four year "remission," which ended about a year ago.  Over the years, I've been to specialists at three medical major centers, kept food and other records, taken any number of differnet medications (Allegra, Claritin, Zyrtec, Prednisolone, Zantac, anti-depressants, anti-anxiety drugs, you name it), been tested for everything under the sun, done "food challeneges," and nothing has ever really had any lasting effect or determined what the problem actually is.  The official name of the condition is "idiopathic anaphylaxis," which is just a fancy name for "you're having an allergic reaction to something and we don't know what it is."  It happens more often in women than in men, begins for no apparent reason (for, me at age 41), can last a lifetime and often goes into remission for months or years and then appears again without warning.  They almost never figure out what causes it.  As best I can tell, it seems to be related to job stress for me, but it's not exclusive to that.  There is no cure, only treatment for symptoms.  I know this is probably not good news for anyone who identifies with what I've just described, but, unfortunately, it's reality, at least for me.  If you do a Google search on "idiopathic anaphylaxis," you can read all about it.
Have an Answer?
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Find out what causes asthma, and how to take control of your symptoms.
Find out if your city is a top "allergy capital."
Find out which foods you should watch out for.
If you’re one of the 35 million Americans who suffer from hay fever, read on for what plants are to blame, where to find them and how to get relief.
Allergist Dr. Lily Pien answers Medhelp users' most pressing allergy-related questions
When you start sniffling and sneezing, you know spring has sprung. Check out these four natural remedies to nix spring allergies.