Angiodema?? (swollen tongue, lips)

[momtocole]

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

[Felix'sMum]

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.

[artery]

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.  

[Jay4]

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

[Jay4]

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

[laura1977]

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.

[Oregon Mom]

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.

[midwest99]

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

[jdash]

   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.

[midwest99]

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

[eves12]

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

[DScot]

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      

[SusanJ310]

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.

[Jack20]

Has anyone looked into "Ludwig Angina "  a tooth or jawbone infection . I started visiting the dentist every 3 months for cleanings and had a 1 1/2 yr free of swollen tongue and lips . Last week the swelling started again but I am a month late on the dentist visits.  Also I found information on " Melkersson-Rosenthal Syndrome " all the symptoms fit , bad news is , no known cause so therefore no known cure . Sure would like to have this stop .

[catzmeiow]

I am in my 60's and have only just started to have either a swollen face or, on the last two occasions, a swollen tongue, which all started in September. The first time I had a swollen tongue was 4 weeks ago and I ended up in hospital. I had already taken Piriton but it didn't help. At the hospital they gave me Prednisolone which worked very quickly and I was packed off home with another 2 days supply. It happened again yesterday and luckily I had got another prescription for Prednisolone from my doctor as a standby so I took it immediately and again it worked.
I have been racking my brain to try to pin it down to some food I had eaten but nothing made sense, then this morning I had a brainwave.
I have always suffered with a bad reaction to insect bites all my life, just gnats and horseflies etc. Not wasp or bee stings which I have never had. In August I got a bite on my leg which made all my leg and foot swell up and it took antibiotics and various creams etc to make it go away. It hurt very badly, not itchy, and it took almost 2 months for the bite to go away completely although I still have the mark on my leg. Do you think it is possible that the poison is still in my system and that any further bites will make matters worse. I have read all the comments on this page and it has tended to prove what my doctor says, that having allergy tests will not necessarily pin down the cause. He has dismissed the suggestion by the hospital to send me for tests as ' not being worth it'.

I would appreciate any comments or suggestions from fellow sufferers as to what my plan of action should be. I feel like demanding to be sent for these allergy tests but after reading your messages I'm wondering if it would be worth while and whether it would be better just to keep a course of medication on hand all the time.

[GMAMA82]

This is amazing!! I thought I was the only one in the world with this problem.  I started swelling first in my fingers, then face(from under my eyes to chin), lips, and finally feet for the last two years.  It started about two months after I had my daughter, so when I went an allergist, about nine months after it first happened, we thought maybe it was hormones or stress.  But it has continued, despite taking benedryl, claratin, zyrtec, moving to a different part of the country, and having multiple food and airo-allergen tests.  Well about month ago, I started drinking this all natural fruit juice supplement which boasts that it is a very effective anti-inflammatory.  With an a month and half I noticed that I had not had an swelling, which usually occurred twice a month.  I kept drinking it just to make sure.  I was drinking it for about four months, and almost forgot about the swelling and what the juice was doing, so I stopped drinking it.  Within two days I had a major swelling episode that lasted two days! I couldn't believe it.  I was so upset with myself for not drinking the juice that week, but I realized that this juice really helped.
I still sometimes feel my chin or feet start to swell up, but I just increase what I am drinking and it goes away.  I would be so happy if this juice helped all of you, but I know everyone's makeup is different.  If anyone is interested in trying this juice out please email me and I will try to get some to you.  april_geisler***@****

[Jack20]

I am going to mention this again and ask you to think about something . Go see your dentist ,  look up LUDWIG ANGINA , don't waste your time asking them about it , keep up on cleanings . I could be way off base but it has sure helped me . One episode in 2 yrs. as opposed to 1 every 2 months . Think about this LEAD FILLINGS .

[Ridgebuff]

I can relate to almost all of these symptoms.  I have had swollen tongue, swollen lips and fingers, welts all over the body.  One thing that I am sure about is that the lips and hands could be related to taking aspirin.  I used to take an adult dosage and had severe reactions.  Then I was determined to be able to take one baby aspirin.  But if I have to get off the aspirin for surgery, then it comes back when I resume.  Currently I am off the stuff, however I am having other issues after bone transplant dental surgery.  
Lee

[sandeep1303]

I have a son (8yrs old).20 days before , he had swallon submental area adjacent to his chin.I conducted FNAC test of the swollen area and pathologist told me that he got high eiosinophil particles in the blood.My doctor suggested Antibiotic & Anti-allergic for that.He got rid of swelling problem after 2-3 days.
4 days before  he again get submental (area adjacent to chin) swelling.I conducted his Eiosinophil Count test and found 20% (Normal range is 2-6%).Doctor again suggested antibiotic (Not antiallergic this time).The swelling go away today.Now I 'm observing the problem of swollen right portion of his tongue.
I couldn't figured out/diagnose the problem,
I'm in a stress that what's going on my child.Kindly help me to suggest any thing as one of you may also have such type of problem (I pray you mayn't).
It is added that my son is hypersensitive since his birth but his Eiosinophil Count doesn't go beyond 8% previously.

Thanks

Sandeep
INDIA

[danarielle]

I just came across this forum.   I have two stories to tell.  Before I begin, I sincerely sympathize with everyone's stories.  Idiopathic Angiodema is an extremely difficult set of symptoms to live with -- and frustrating to say the least.  I believe that this phenomenon is perhaps much more common than we believe -- since most of us do not talk about it with our friends, co-workers etc, and we do not go out when we experience the severe facial swelling.

1. At age 44 (about 14 years ago), I had a severe incident of swelling of my lip and tongue.  My wife, a physician, gave me a shot of adrenaline that brought down the swelling immediately.   Within weeks I had another incident.  This time, I went to a number of allergists, who were unable to identify any external source of the reaction.   For TEN years, I was subjected to numerous incidents of severe swelling of my lips, tongue, hands and fingers, feet, testicles, etc... The swelling frequently started in the early morning, and was severe by the time I awakened.  I would experience the symptoms at least once per week, if not more frequently.

The only treatment that worked was to take 3 benadryl -- which of course knocked me out for hours.  But if I took the benadryl early enough in the course of the swelling, it would stop the swelling, and ultimately, the fluid would be absorbed into my body.  But I missed days and days of work.

The phenomenon ended about four years ago.   "Idiopathic Angiodema" was the diagnosis -- as an earlier commentator noted, that is not much help!   The only additional piece of information I will give you was that 14 years ago I accepted a very demanding professional position, which was very stressful, involved a lot of travel, and long days (10-12 hours/day) at work.  The new position coincided with the start of the symptoms.  Four (4) years ago, I stepped down from this job, and am now in a very interesting, but much less stressful work environment -- which coincided with the total cessation of the symptoms.  That is STORY 1.

STORY 2

We have a 17 year old son.   He is a competitive athlete who trains six days a week, and competes in international competitions about five or six times a year.   At the age of 14 he developed Idiopathic Angiodema!   Symptoms included severe swelling of his lips, tongue, hands, feet, etc, etc.   His symptoms occurred much more frequently than mine had.  We have taken him to a number of "angiodema specialists".   He has been on daily regimes of allegra, zyrtec, singular, etc, etc.  Nothing seems to work.   Benadryl of course stops the swelling if started early enough -- and again, 75 mg is the necessary dosage.   When we cannot control the symptoms (that is, when they occur on two or three days in a row), we have a Prednizone prescription.   We have a TUE (Therapeutic Use Exemption) that permits him to compete internationally.  But we are reluctant to give steroids to a teenage boy.  He missed 19 days of school in the Fall semester due to the swelling/benadryl combination.
The most severe symptoms often coincided with his return from international competitions -- which of course involved both stress, and  sleep disruption.

About a month ago, we started a special diet -- we have excluded ALL:processed foods from his diet;we have excluded all red meat, and purchase organic foods if possible.  That, we prepare all his foods "from scratch", including bread, soups, vegetables, fruit, fish, chicken, turkey etc.  We are particularly careful to ensure that no food has any additives, preservatives, artificial colourings, etc.

He has been symptom free since we started the diet regime.  

For everyone who has this set of symptoms, you might consider the special diet course of "treatment".  The diet and cessation of symptoms might be coincidental of course, but the diet is extremely healthy and it certainly cannot hurt him!  Of course, he still takes his daily allegra, but we have stopped the zyrtec which he was taking four times a day.

Good luck,

David, New York

[johnnycupcake]

ummm.... all my life i have never been allergic to anything. one morning i woke up and could barely swallow bc my tongue was so swollen. it ended up going down on its own after a long period of hours. all of that happened last week. now, i have just awakend to a swollen upper lip. i dont know how much more of this BS i can take. i dont understand whats going on with me.

[dwizzle]

ever since my sophomore year at college I have been getting severe sinus infections. However, the problem has become more severe because in the past two months I have had three sinus infections. When they start I can't leave my bed for days and I have an entire drawer dedicated to medications that I take when I get these infections. And my tongue swells randomly when it rains and under my tongue tends to swell as well. I take zyrtec everynight but it does'nt seem to ward off these horribe sinus infections. I even have to use an inhaler the first few days of the sinus infection. I try to be healthy but I keep getting them.Im only a junior now but I cant deal with these infections anymore.

[summerluvr]

I have this from food "allergy".  I experience, hives, swelling lips, gentials, eyes, plus  asthma, and rihinitius when I consume eggs, or nitrates (smoke flavouring) or fruits.  The thing is these do not show up as positive allergies on allergy skin pricktesting.  So the allegist says I have "idiopathic chronic hives" non-allergenic, but I know for a fact I only experience it if I eat these foods, so I am convinced its an allergy.  I tell other Dr's of my "sensitivity" and they always say "oh you mean an allergy".  I recomend a food elimination diet, thats how i was able to figure out my triggers.

[sandeep1303]

I was suffered by tonsils in my throat which appears alternately on both sides.After using antibiotic for 6-7 days , it subsides and appears on other side of throat after 15-20 days.I met many doctors and conducted an allergy test.In allergy test I found myself allergic to mant thinks including milk, some vegetables,rice etc.I stop to use everything but problem persists.I tried to schedule my diet to not to eat junk foods.It helped but not a lot.Then my doctors told me to got an operation of my tonsils.

Fortunately , I met with a Homeopathy doctor and he gave some sugar balls to me .It is really amazing to see that these sugar balls (Homeopathy) helped me a lot and the frequency of infection goes on decreasing.Now I'm taking Homeopathy medicines since Oct,2007 and I suffered only one time by throat infection till today (during 5 months ).During these 5 months I ate everything including the food with my allergens but nothing made me sick.I suggest u all to goto a good Homeopathy Doctor.

God bless u all.

SANDEEP
INDIA

[Jan1220]

Wow! I can't believe people have the same problems as I do! I have NEVER been able to figure this out. Horrible unexplainable swellings. I have had half my tongue swell to 5 times it's normal size, I have had lip swelling, tonsel swelling, hand and feet swelling. It is hot and VERY itchy! I have been to an allergist, I know what I am allergic to. (no foods) I must say that those of you relating it to stress may be right-on. But it seems to come on me suddenly, and starts with a strange tingle in the area, then goes to itch, which escalates quickly into a major swell. It can last for hours. I can't take benadryl at work, so I usualy just suffer it out. It seems to come in cycles, and I can go months, or years without it, but when it starts, I can get 2-3 a week. Lately when I go out in the cold, my palms start to itch like crazy for about 30 minutes. I am SO glad to know that I am not alone, or crazy!     Jan