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Angiodema?? (swollen tongue, swollen lips) - Allergy - MedHelp

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

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.

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.

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

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

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.

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.

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

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.

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

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

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

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.

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 .

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.

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***@****

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 .

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

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

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

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.

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.

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.

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

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

My first symptoms which are identical to Jan1220 started in August 2007.

I am 53 years old and had minor allergies growing up and for the most part I grew out of them.

I researched online and believe it's Angiodema.

I have an appointment with an Allergist soon.

My lips have swollen 3 times the normal size, pressure from shoes and under garments also cause swelling.

I never know when the swelling will be triggered and once it's triggered, it takes a matter of minutes to form a huge bump which then expands rapidly in whatever course it decides to take.

The swelling has moved from the top lip to the bottom lip, down my neck and back up.

I have had by tongue swell, finger tips swell and feet swell!

The feet have been the most painful, because the swelling becomes rock hard.

All of the swelling is tingly and warm to touch.

It can take 24 hours or more for my swelling to completely dissipate.

When the swelling dissipates on my feet and fingers I actually shed the top layer of skin around the swollen area over a period of days, like a blister on the mend.

The lip and neck swelling don't itch, but the finger and feet swelling becomes an insane  itch without any relief from over the counter anti- itch products.

Taking  an anti-histamine slows down the whole process.

I'm worn out from this process and find it interesting that so many more people are developing this type of allergy, what has sprung up in our environment and has so many people affected by Angiodema??? Susan

I had these symptoms of unexplained swelling and itching in various parts of my body about 14 years ago.

The symptom could appear anywhere on my body and last from eight hours to a few days.

I noticed that the swelling would often migrate in a particular area, say the foot, starting in the heel and working its way to the toes.

After several episodes, I noticed that a slight itching in my tongue would precede most incidents and often the tongue itch would also swell after a time.

I went to seveal doctors to no avail.

Finally, my wife read something in an old Adele Davis book on nutrition and suggested I try NIACIN.

I took two tablets on the first day and one thereafter for about a month.

The symptoms disappeared and haven't recurred for 14 years.

The other night, a swelling suddenly appeared in my foot and another in my tongue.

I took two NIACIN tablets, the symptoms disappeared in about an hour and  have not recurred for several days.

I have no idea why this worked for me, but it may work for some of you.

I hope so. Joe

Hi, Hives are a nuisance, but are not usually dangerous.

Still, in some cases hives can be a serious, even life-threatening condition.

An allergic reaction could quickly affect your ability to breathe, so call 911 or go to an emergency room immediately if you have hives accompanied by hoarseness or wheezing, swelling in your tongue or face, tightness in your throat, fainting, or if you develop hives on your tongue. If you have a life-threatening allergy to a food, medication, or insect sting, wear a medical identification bracelet that describes your allergy.

Also, make sure those around you -- coworkers, schoolteachers, family members, and medical providers -- know about your condition and how to treat it. Your doctor may advise you to keep on hand a shot of an "anti-shock" kit that contains an antihistamine (usually Benadryl) and a drug called epinephrine, also known as adrenaline, to counter an allergic response.

This prescription medication is available in a self-injection pen, known as an epi-pen, that you'll need to carry with you at all times. If you don't know what causes your hives, keep a diary of what you eat as well as what you do each day and what medications and other products you use.

Allergy testing can also be helpful. ref: http://www.myonlinewellness.com/topic/hivestreatment

Hi... I'm new here and so glad to find you all!

I have had this problem for the past 3 years,since I moved from Southern California to Northern California.

Every spring/summer, when it starts getting hot, my lips swell to 10 times their normal size.

It starts with tingling at the edges and goes on to look like clown lips, red and chapped from nose to chin.

I develop tiny little bumps at the rim of my lips and they ooze and crust.

Last year when it happened, I went through everything possible from food to cosmetics to laundry detergent, toothpaste...

You name it, I changed it.

Finally, when I stopped eating papaya, it went away!

Back to a normal life for me without papaya...

Until this year! It has turned to spring, the weather is warming up and my lips are doing the same!

I have been to allergists, nutritionists, etc.

And no one can figure it out!

I do notice that when I leave my home for a few hours, the swelling completely goes away and within hours of being back home, it returns.

It wouldn't be so bad if it weren't so extremely painful!

I have a lot of trees around me that I did not have in So.

Cal., oaks, redwoods and other pine evergreens.

Has anyone ever heard of allergy to those trees?

Maybe mold spores let off by them?

Anything??? My allergy tests show high on trees (mixed), grasses and weeds.

Sore, swollen, painful, oozing lips is my only symptom.

It will be gone for another winter in September.

I just read the comment about NIACIN.

I have the lip/toungue/facial swellings that happen when you least want them too.

The allergy tests say "dust mites" which is like saying "air".

Because they are everywhere and how do you prevent them (i have all of the dust mite protectors for bedding).

Everything that was described above, the symptoms, embarrassment, and trying to explain the condition to anyone that has never heard of it, is ever so frustrating.. I'm going to try the NIACIN and report back soon. I'm glad i found this forum and hope people will read and respond. My email is: cs2gd2btru@yahoo if you would like to chat directly. No one I know has this condition and I feel like a total "freak" when it happens..

Would like to be able to talk about it.

I am 47 years old, the first time in 2003 after eating a banana bread, my upper lip start swelling and I quit my job & run to the doctor ou gave me benadryl, after 48 hours the swelling went down.

He goes like that almost every 3 months I have either the upper lip or down lip and then it was every month before my period, the doctor did all the allergist test, nothing came up of what cause the allergy.I have to travel in summer to Europ and I started to take Aerius almost every other day to avoid the allergic staff.It came but not bad, just a little bit, I remember my daughter and I went to the zoo.After that It went away.I forgot but recently on February 2008 it start again after eating an apple ,since that time it came 4 times, after eating tomatoe and the other time after eating fish and orange.

Yeaterday the swelling came back again on my down lip, I took aerius and I know by the end of the day it will go away.I am very concern I dont know what to do.

My only medecine is Aerius.The only part on my body who are swelling is my upper or down lips.

Please help If you know anything can help.

I am new to board.

About 3 months ago I had my first episode with this.

My hands got warm, itchy, and swollen.

The swelling moved up to about 1 inch above my wrist.

I went to the doc and he said it was angiodema.

Gave me a shot of cortisone.

One mone later my lower left lip started to swell and it move up the right side of my face.

Went to doc and got another shot.

Now about another month I got a episode on the left side of my face.

Another shot. Doc took me off prilocec(sp) thinkng it could be the cause.

I started on pepsid and been on it about a month and then still got another episode.

So, it wasn't prilocec.

I have no clue. I am 60 years old and have been very active in many sports and hobbies.

My wife died suddenly about a year ago and I am approaching the one year anniversary.

I don't know if it could be a factor.

I have been under a lot of stress all year and I don't thing what is going on now is any worse.

I wan't to try to get to the botton of this but from commets on the board I don't see any clear coarse of action or known strategy. If anyone has any ideas I would love to hear.

My email is ***@**** Thanks. Larry

I've read over the posts and I am wondering if perhaps many of you have a sensitivity to latex?

Besides medical sources and tires and toys, many times it's hidden in food sources like ice cream wrappers and the banding on rotisserie chickens.

Some restaurants still use latex gloves in handling food.

It's in clothing, especially stretch garments, and under garments, and even when spandex is used, the thread they stitch with is rubber latex and the reaction takes place when there is perspiration and electrolytes making a connection with the immune system.

I speak from experience on that.

My reactions are not IgE, but IgG, and it affects me with skin rashes but also systemically with burning pain and cramping and sore throats, wheezing, and flu like symptoms with leg cramps.

I've had swelling and inflammation from electrodes and rubber around a ultrasound transducer.

If contact takes place through a dental setting or injection with rubber stoppers, there is so much pain and swelling it causes paralysis of the side of my face where contact was made.

It takes several weeks to get back to normal.

Once my tongue was paralyzed and swollen because of latex transfer because the assistant accidentally wore latex gloves.

When the rash heals up, I'm left with pigmented brown scars on my skin and white scars in my mouth.

I have a large painful scar on my lip that is a constant 8 out of 10 on pain with intense burning because the oral surgeon decided to wear latex gloves.

They're all afraid of HIV and think that everyone might have it and latex will protect them the best.

While that's not true and nitrile is also effective, it costs a few pennies more.

I now carry bright green N-Dex gloves with me that are free of latex and free of chemical accelerants and love them enough to even garden with them they're so comfortable.

Bananas make my sinuses and eyes burn and avocados give me nausea.

Some fruits have a strong cross over of similar proteins.

Here's a link:  http://www.webmd.com/oral-health/dental-health-latex-allergy I wanted to add that the IgE testing is only 80% accurate and it can take as long as 12 hours sometimes for an anaphylactic reaction.

I think it's the length and size of the dose exposure that is most important.

They don't test for IgG reactions.

Sometimes it's the chemicals, but sometimes it's the latex protein itself.

There is even research that there can be illness caused by the endotoxins introduced during processing.

I find that tea especially and Vitamin C have been helpful in reducing symptoms.

My tongue swells from MSG and some shell fish.

Use Liquid Benadryl or the strip on your tongue.

If it happens on a full belly it takes even longer for the Benadryl to work.

Smash up the pills if that's all you got and drink them with some water. Besides seeing a specialist in allergy, carry an injectable eppi pen.

I have never have never had this happen to my in my 29 years of life.

The first time it wad mostley by toung and inner cheeks  it was like having ulcrs.

Thie time its just my bottom rigt lip!

The weird thing is both times i was straitning out my car.

The firt time i put some pens in my mouth to remove the caps to see if the worked.

This timr i put nothing in my mouth.

It is very pain full and mostly cuase it is so swollen it gets in the way of my toung and i keep biting and licking it.

Someone please hep

Hello, Ive been searching for some answers to my problem and have found a few of the same symptoms Im having here.

It seems to me my problems started after I had the flu in Feb.

08. First I got this rash on the sides of my cheeks and around my nose, little red bumps (it was not acne).

I tried all kinds of things and what helped the most was Caladryl on the rash areas.

I would apply it at bedtime.

It took out the redness and dryed up the rash bumps, but I had a mess with the dryness.

Well that is finally gone after months, now I am getting the swelling in my eyes in the mornings and my bottom lip has swollen up, this morning I got a raised bump on the side of my chin then my lip on that side swells up.

I also have itching on the bottom of my feet and my hands itch sometimes.

I take two benadryl for everything and its seeming to help me so far.

But Im 52 and have never had these problems before.

Never was allergic to anything in my life.

Im hoping this site will help me before I have to waste my time and money going to the dr.

We have a house cat for 2 years and nothings bothered me before so I dont really think its cat dander.

Really nothing much has changed in what I eat either.

The main thing I have in my life though is stress!

I havent found a cure for that.(ha ha)

What is this juice your drinking.

Im cant get rid of this swelling to save my life.

Boy, I am encouraged and frustrated at the same time.

All these people with the swellings, and very little clue as to what causes it. I have had the problem for several years, and the last time I went to the emergency room they diagnosed it as my high blood pressure medicine.

Sure enough, on every one of those I looked at, face/lip swelling is listed as a side effect.

So I would check that. I don't think that's my problem, though, as I am on my third (Went from Ace inhibitor to beta blocker and now calcium channel blocker) and it is still happening.

Or maybe it is, I don't know.

I just know all of a sudden instead of 2 episodes a year, or none, I have had 5 episodes in the past three weeks, and two today.

It has now moved down into my neck. I may try the niacin - I know my mother and aunt lived by Adele Davis, and I am going to go out and find her book.

My 10yr old daughter had the influenza in January and a couple hours after giving her tylenol tablets her lips become very swollen.

It was scary.  Just yesterday I gave her advil at bedtime and the next morning her lips were swollen.

The dr seems to thinks it's pain relievers but I am not so sure.

Another dr. says it could be food colorings or other things she has ate that could've caused the reaction.

Reading all of your postings, I am wondering if it could be something else.

On both occasions she had had products containing sorbitol and red food dye #40.

Has anyone experienced an allergy to these that caused swelling of the lips?

IF ANY OF YOU ARE TAKING MEDICATIONS OF ANY KIND, EVEN FOR A PROLONGED PERIOD OF TIME, MAKE SURE ITS NOT THE MEDS THAT ARE CAUSING THE HIVES, SWELLING OF LIPS, ETC.

I WAS ON BLOOD PRESSURE MEDS AND DIABETIC MEDS FOR YEARS AND AFTER A VERY STRESSFUL EVENT IN MY LIFE I BEGAIN BREAKING OUT IN SWELLING OF THE LIPS, TONGUE, HIVES ALL OVER.

I THOUGHT IT WAS JUST THE STRESS, BUT IT TURNS OUT I WAS SUDDENLY ALLERGIC TO SULPHUR WHICH WAS PRESENT IN TWO OF THE MEDICATIONS I HAD BEEN ON FOR SO LONG.

SO AFTER WE SOLVED THAT I HAVE BEEN FINE FOR ALMOST TWO YEARS NOW AND TONIGHT I CAME ONLINE BECAUSE OUT OF NOWHERE MY BOTTOM LIP SWELLED UP TONIGHT BUT I AM HOPING THAT IT MIGHT BE AN INSECT BITE THIS TIME.

BUT CHECK THOSE MEDS BECAUSE IT CAN BE SOMETHING IN YOUR SYSTEM THAT YOU'VE ALWAYS BEEN USED TO THAT SUDDENLY WORKS ADVERSELY.

Just returned from CVS my girlfriend has swollen lips 3x their normal size. This has  occured 3x this month.

Allergist found nothing ! The CVS Pharmacist said she should stay away from anything with a PRIL at the end (generic) She takes high blood pressure meds Lisinopril and the combination causes such a allergic reaction.

Also, anything  with SARTAN .

Her Dr. prescribed Methprednisolone, a series of 21 pills over days.This is scary !

I almost took her to the hospital ER  last night, but I think we nailed it !

Thanks, CVS !

Hi .. I found this article and thought it might interest some of you .. Mary David Derry Responds: Dear Patient Acute giant urticarial reactions (hives) with angioedema are not a common problem.

However I have had in the practice about half a dozen all of whom responded completely to treatment with thyroid.

After I had success with a couple of patients, I started to search the literature for any other physicians who had found this.

Only in the early part of the last century could I find anyone discussing the topic of Giant urticaria.

(1) I remember two of these cases quite well.

One was of a lady of 60 who developed the "giant hives" so badly that she was admitted to hospital.

As I was the doctor on call that day and she did not have a family physician she ended up being my patient.

I waited until she was discharged from hospital by the specialists and I could discuss this approach in my office.

She was desperate and was willing to try anything.

She was first started on 180 mg of desiccated thyroid for about 6 weeks and got a partial improvement in her symptoms.

When I put her up to 250 mg all of the hives disappeared.

They never returned over the following 8 years while she was on the thyroid. The second was a man in his early 50s who had a some other symptoms as well.

He was in good shape and played soccer every week.

However at visits to friends houses he often would fall asleep.

He also sometimes fell asleep while eating at the table..

At the same time he kept having huge swellings in different places.

The most conspicuous were his lips.

It did not occur in the same place every time.

I witnessed these a couple of times and they were truly alarming swellings.

He was sent to all types of specialists all of whom confirmed his diagnosis of acute giant urticaria with angioedema. At one point he was seen by and Ear Nose and Throat specialist who did a Cat scan of his upper body and found a large swelling at the back of his throat near his tonsils and adenoids.

The ENT specialist felt this was a cancer (lymphoma) and admitted him to hospital for a biopsy.

However, when he got to surgery, there was nothing there.

The hive at the back of his throat had disappeared.

Finally I suggested we try some thyroid to which he agreed.

Again this patient was desperate to solve his problem.

He didn't think that his falling asleep and the swelling of his lips were related.

He was started on 250 mg of desiccated thyroid and within about a week he started to improve.

By the end of two months his hives completely stopped.

His falling asleep problem also disappeared. It is interesting that you were given prednisone and antihistamines which I also found do not work.

Prednisone is far more dangerous and has far more side effects than thyroid medication.

So it does not make sense not to try thyroid in adequate does for such an awful problem.

It is not well know that thyroid is safer than aspirin by far.

Both aspirin and desiccated thyroid were discovered in the 1800s.

So during the first 70 years of their use in medicine hundreds of children died every year from overdoses of aspirin.

This was only finally stopped when pharmacies started putting child-proof caps on the bottles.

During that same time children also overdosed with thyroid.

There are no reported deaths from any of the acute overdoses of thyroid hormone.

Only 4% of the thyroid overdoses are even admitted to hospital.

(2) My overall conclusions from this is that giant urticaria with angioedema is a individual low thyroid problem, which is easily treated.

As you can see if the patient is questioned carefully symptoms of low thyroid can be found as well.

This is one of the problems with low thyroid conditions is each person can show the effects of low thyroid in their own personal manner. One patient has mentioned that she did will with the giant hives with accupuncture.

I think this could be quite helpful.

But if the true nature of the problem is hypothyroidism then the other symptoms will likely not be fixed (like falling asleep at the dinner table) unless thyroid is also given.

Also the Giant Urticaria indicates there is low thyroid condition and likely other symptoms and problems will start to come up if only accupuncture is used.

Nevertheless that is an interesting and apparently effective approach for some people. I should mention that people who have unexplained recurrent hives also respond to thyroid treatment.

The two types of swellings likely are both related to low thyroid condition. Hope that helps with your understanding one of many types of peculiar individual reactions to low thyroid. David

This site has given me a glimmer of hope! I thought I was the only person to suffer from this.

My swellings started about 5 years ago.

A collegue of mine gave me some home made quince jam.

This (I thought) caused my lips to swell to three times their normal size, but only on the left side.

I went to A & E and was told to steer clear of quince. Two weeks later I got swellings on my hands, and did not link the two.

Over the next month or two, the swellings became more frequent and appeared all over my body. Eventually it got to my tongue and that swelled, but only on one side.

I again went to A&E and had a shot of adrenalin. I was finally referred to a allery specialist who tested me for everything and found nothing.

I was finally told they had no idea what it was and to "just live with it" So armed with an Epipen, I lived with it.

It then just stopped in December 2005.

I put the whole 2 years down to stress and carried on.

Last week they returned with avengance, I have had swellings every day for a week I am in pain, and very depressed about the whole thing.

I must be a freak, as no-one else has this. I then googled "random swellings appear on my body" and up popped this site. I just wanted to share my story with the rest of you who suffer with this.

If anyone has any glimmer of hope of a cure I would be grateful.

I am awaiting my tongue to swell again any day, I think my wife is very much looking forward to stabbing me with my Epipen!

:-) Matt

Angioedema of the tongue.

After being prescribed two types of penicillin in short succession two months ago (and having not taken them for 6 weeks now), I developed swelling in one half of my tongue two days after stopping the antibiotics.

Additionally, I experienced hives off and on over the weeks.

The tongue experience I have had three times over the month and a half after I stopped taking the penicillin.

Twice I went to the emergency room and was give cortisone and benedryl IV.

Since then I carry an epi-pen and carry prednisone and benedryl with me.

However, I hate having to take cortisone.

The allergist told me that the penicillin metabolite can stay in the system for months.

Has anyone else had this enduring type of allergic reaction to meds which have not been taken for six weeks now? Sophie

Well just to keep you updated.

My tongue swelled up today!

My wife injected me with my Epipen and it slowed it down.

I was rushed to hospital by ambulance and have been given steroid injections and antihistamine.

(which made me sleep for 2 hours)  My tongue reduced in size and I was sent home. Consultant said, I was a "wierd" case as they still have no idea what causes it, gave me a new Epipen and sent me on my way. Funnily enough I did take penicillin some time ago, but it had no effect on me at the time. Going back to GP with new problems and see if there is anything new things to try. Take care my fellow swellers Matt

The swelling in my facial area started happening at the age of 47 (I am 57, now). It started on a houseboat trip to Lake Mead, Ca.

Where the temps were so hot we slept in sleeping bags near the water, and, when I awoke, my nose area was swelled to 3 times normal, and my face was filled with mosquito bites.

Ever since those initial bites I have had problems with swelling, on and off, to this day.

Sometimes I can go months with no reactions, then other times it will hang around for weeks disappearing an re appearing.

I've had all the symptoms described here, partial tongue swelling; partial lip swelling;

One side of cheek swell, small red bumps show up with itching on hands and feet sometimes;

Swelling of fingers. I am allergic to Penicillin; I had a heart attack at age 39; I take an aspirin everyday, and I feel this may be part of my problem, (as it says on each bottle, to stop useage if facial swelling appears). But, I sometimes wonder if the multiple mosquito poison bites remains within the cells of your body for extended periods of time? Just a guess... Lou

Hello Just wanted to give another update.

I went to Spain for the weekend and ended up with another swelling on my tongue. To cut a long story short, I was injected with predisolone with made my tongue go down immediatley.

I wasw also prescribed Ebastel Forte which is a antihisthamine.

I went to the GP once i returned to the uk to tell him what happened. The Ebastel is not available in the UK so I am unable to get it.

Has anyone else taken Ebastel and if so has it worked.

So far no swellings in 3 days Maybe, just Maybe.

At the moment the left had side of my tongue is partly swollen, started about 40 minutes ago, tongue got very itchy, have taken Polaramine and asked people at work that if it gets bad to call an ambulance, hoping the antihistamine will work.

Have not had an attack for about a month.

The swellings started about 10 years ago, mainly tongue, with a lip or two thrown in for good measure.

They stopped about 6 years ago and had none until July/August this year, when I had 3 in one week, ending up at the hospital at 2am.

It was when this happened that the Doctor gave me the name of this condition, does not stop it happening, but at least it has a name.

Since they started again, I have had tongue, lip, upper throat, lower throat, I suspect in my intestines as I was in agony for a few days.

The Doctor did tests to see if I was low in a enzyme, but I was fine.

I too was diagnosed with angiodema.

My doctor said I just had to live with it and suggested i take a zirtec or like otc antihistamine every day.

Just had another swollen tongue bout and took three benadryl, it kept on swelling so stabbed myself with epipen that was given to me last time I was at the er for swelling lip.

I have noticed that the attacks sometimes come the day after drinking too much.

Not sure if being rundown with a hangover is triggering it.

Anyone else have any relation to alcohol. UGH!

Hello all. I just wanted to know if anyone else has heard of being alergic to Salicylates.

I have met someone who has the same symptoms as me with swellings and she has been diagnosed with allergy to salicylates. For more information look at this website www.webmd.com/allergies/guide/salicylate-allergy I am going to go to my GP and see if there is anything in it? Also just to let you no that my Ebastel anti histhamine seems to be working.

Hi Matt my mum was told she is allergic to salicylates in the 1970's Her symptoms were like ME She eats rice and fish a lot.I found this site as I have swollen lips and tongue plus sore throat each time I eat chocolate and don't move around.

Then I fall asleep as well.

I thought it was co-incidence but it isn't.May be worth mentioning that I am allergic big time to fruit Vitamin C.

It runs in my family so they knew when I was born.

Apparantly its the second most common allergy in the UK.

Citric acid is used a lot as a preservative in sprays and solutions so check the labels.

Had a terrible time with contact lenses until we realised it was the solutions.Should add I get rarely get colds and my skin is clear as a babys -so much for vit C myths !

Yve

Hi, Im sitting here with two eyelids like Ive just been in with Mike Tyson.

I Know whats coming!

Started with angiodema 12 yrs ago when pregnant with first child (Hormonal?) with lips swelling to enormous proportions, followed by monthly attacks on eyes, lips, tongue etc.

Sometimes every other day, then nothing for 6 months.

Strangely as I noticed other people say, mainly occured in the middle of the night, when you wake thinking "Oh No, here we go,"my face feels funny",but its no joke, it can be really painful and scary when your tounge swells up to 10 times its normal size and you cant talk or swallow.

Sometimes it almost seems to knock you out and you pass out into a heavy sleep, but dont know if this is due to the anti hist.

Prognosis & Treament: Immunologist at Birmigham Hospital  (Not a dermatologis-they only deal with skin and dont have a clue) tested  blood, it showed some sort of immune problem where my body reacts to itself!

Can be caused by low thyroid (not my case) or just random, not usually life threatening, and NOT related to an outside influence ie eating or drinking something, take anti histamine daily for prevention, or steroids if bad attack, will go into remission then reoccur at random, no known cause no known cure!.

Well thats how its been for me, and does seem to get more frequent when stressed, tired or run down.

Good Luck.

When, oh when will someone find a cause and a cure for this miserable condition?

Mine has today appeared in a new location.

A big red weald on the inside of my arm.

Now I have an itch on the back of my hand, so I suppose that will develop into a swelling later.

I am so sick of all this.

Just hope it doesn't progress to my tongue and lips during the night.

It all gets very frightening.

My only consolation is that I'm not the only one.




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