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

[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 (symptom), 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 (symptom), 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 (allergic) 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

[suz54]

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

[Joe44]

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

[Dr_Aparna]

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

[lippy408]

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.

[cresscindy]

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.

[Christiane1960]

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.

[kord53]

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

[catnip009]

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.  

[crystalfresh]

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.

[kittenluv]

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

[Greeneyesonu1717]

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)

[ciarapica]

What is this juice your drinking.  Im cant get rid of this swelling to save my life.

[xelil]

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.

[brenda188]

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?

[carpie]

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.

[BA0628]

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 !

[mboylebradley]

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 (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

[Matt_Clark]

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

[pixel123]

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

[Matt_Clark]

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

[lumin4]

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

[Matt_Clark]

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.

[Janski54]

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.

[ugh315]

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!

[Matt_Clark]

Hello all.

I just wanted to know if anyone else has heard of being alergic (allergic) 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.

[yve52]

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

[kmm_aljk]

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.

[kmangal16]

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.

[MoldMan]

When I moved back to florida at the age of 32 (now 33), my condo had a roof leak that upon months later inspection had never actually been corrected properly. For months after the initial leak, I started having migraines, fevers, flu symptoms, depression, acne, hair loss, to name a few things. When I found the mold growing in my condo behind a piece of furniture and up through the carpet, my symptoms exploded. My upper lips swelled, my throat began to close up, I had trouble breathing, 3 trips to an ER clinic where they said I am suffering from Angiodema, an allergic reaction to mold. We then discovered mold in the office where I work about 2 weeks after that...so I had it at work, and at home. Work ripped out the ceiling, all the ductwork, and replaced the entire A/C system.

Cut to 4 months later, $9,000.00 and counting in expenses that include moving costs to a new condo, health bills, skin products, liquid vitamins, regular vitamins, etc...not to mention, looking horrible most of the time.

I should probably also mention that I work-out at the gym 3-4 days a week, do yoga, eat healthy, am in very good shape otherwise, and try to live a healthy life style....but I do have an extremely stressful job and work long hours. I have also always had sinus issues, common allergies to things like pets and dander, and rare things like Zucchini and Gluten. The ER clinic said I need to see an allergist and get an allergy shot for my mold allergy every week for the rest of my life because my reactions are so severe. This just seems crazy to me??? I am trying to do it with Holistic remedies that I can manage, and reading everything possible in the web about this problem. I am going to "Whole Foods Grocery Store" to get more supplies now...

It happened again about 3 weeks ago when I accidentally pulled out two pillows that had been in storage since the move. Everything else I owned was professionally cleaned by mold remediation when I moved into the new condo. These pillows were missed in the rush of the move...so guess what, yup, swollen lips, migraine, throwing up, more prednisone steroids, benadryl, etc, etc...I have thrown out the pillows and it has been getting better until last night at about 1 in the morning, I felt the pain starting above my lip...I am taking the benadryl now...

I am tired, scared, out of money for this, and frustrated...but just when I thought I couldn't take any more of this, I found this community. I am so sorry for everyone on here! Not that my story helps anyone in anyway, but I guess I wanted to say thank you to all of you for telling your stories so I don't feel so alone.

My friends have started calling me, Mold Man....( we have to laugh about it, or else I would probably just start crying ) This too shall pass, as they say, but I'm ready.

All the best from Florida,
J  aka  MoldMan

[kmangal16]

Hi.  It's no fun is it, looking like elephant man every few days?  I've been to allergists, immunologists, dermatologists, come off my other medications, all to no avail.

When I have an episode of angioedema, I take a Fexofenadine hydrochloride tablet, but it still takes forever for the swellings to go down,

I just hope and pray that someone, somewhere will come up with a cure in the very near future.

Best wishes from UK.

Sheila aka kmangal16

[skiterchappell]

heyy im 21 and a few days ago i slept outside in a sleeping bag after drinking a nice amount of tequila-(not sure if that has anything to do with it, because i drink all the time and nothing like this has happened, hoping i got bit and it will go away vs some bug crawling in my ear or something, but this is the 4th day with no disipation of pain or problems.) wasnt cold but when i woke up my mouth hurt a little and when i went 2 drink some coffee it was so painful to swallow my eyes and nose would run- tried blowing my nose and hocking up anything i could (which wasone of the most painful things to do) and it helped for a while but soon it came back. it started out where the hard and soft pallet meet. very difficult to eat. then the next day my tongue web was very swolen, all the way back to my throat. as was the middle of the bottom of my tongue. my throats smaller than usual and the inside of my bottom lip has a bunch of odd large lumps. everything is excrutiating. my entire jaw bone hurts because of clenching it due to the pain, which makes the inside of my ears hurt, causing relatively my whole skull throb. i catch myself holding my breath beacuse of the pain as well. the swelling on my pallet has traveled up my hard pallet to about the tooth further back than the canine. worst in the mornings and evenings/night. ive been taking as much ibprofin as i can without maxing out on the limit. this BLOWS. im a lazy unexciting bum now because im in CONSTANT pain. when i eat i have to chew and chew before attempting a painful swallow.~ this is so frustraiting.... i have no idea how much more i can take... PLEASE contact if you have any ideas or thoughts or comments...il take any help i can get!!! ~skiter.***@****

[RPZ54]

My swelling issues started over 10 years ago.  First about once every 6 months and continued frequency to just about every other day.  Most of the swelling has occurred in the lips, tongue and uvula but I’ve also had swelling in the eyelids, hands, feet, buttocks and genitals.  The allergist tested me on everything to no avail.  I was even on a 6 week diet of lamb, turkey and rice and I still had swelling.  The good news is that the allergist has not given up ( I have good insurance!) .   For the past few years, the allergist has me on a combination of Singulair, Zyrtec and Ranitidine.  At first I took the pills whenever I felt the symptoms coming on and the pills would minimize the swelling.   I am now taking the pills proactively.  Everyother day I take the pills and it keeps the swelling away most of the time.  I still sometimes get onsets near the end of the second day.  The way this has progressed I will probably soon start taking the 3 pills every day.  It beats the alternative and I would recommend for others to try this therapy.  
I still keep away from aspirin, ibuprofen and large quantities of shell fish.  

[millmount]

i started having these symptoms about 5 months ago first it was the tongue then the bottom lip then the scrotum then the lip , i take piriton to reduce the sweling but it lasts aprox 24 hours each time,has anyone been taking natrasleep tablets which contains a substance called valarian? i wonder could this be a trigger joe.

[dk101]

Hi everyone,

I started having lip and throat swellings February of this year however, I have had hand swelling and hives for over 15 years on and off I had no idea that so many people suffered and it is a comfort to know its not just me!

I am currently at an allergy clinic and have been told that I am not allergic to food or drink which really doesen't bode well for stopping these attacks. There is no common denominator each time its driving me mad and really starting to get me down.

Does anyone else just sit there all day scratching? I feel like I've got fleas the only time it stops is when I have had an attack and the hospital has put me on steriods for 5 days. The itching and hives get worse and worse then all of a sudden bam another attack! I really and reaching the end I can't keep living like this! I am due back to the allergy clinic on monday to receive further blood results so I am hoping something will have shown up!

[Itchymum45]

11 years ago i had a spell of extremely large hives on my legs. they would on occur in early morning before I left for work and then again in teh afternoon after I got home.  I always thought there was something in the house but I never found out what it was.  Went to the allergist and she did the skin tests and everything came up negative. The very last day I had the hives, my lips swelled and then went down before I got to work. This scenario went on for about a month.  Now two weeks ago I started in with hives again under arms, on legs, buttocks.  Then about 3 days after that started I woke up in middle of night with swollen lips, we ended up in emergency and they gave me benedryl, steroids and pepcid. That helped but the hives and swelling continue. My head feels like its crawling (like if have fleas) and the back of my neck gets swollen and stiff and my arms, legs and ankles get swollen feeling.  Now today I have a hoarse voice, hives on teh back on my tongue and probably throat and inside my nose.  At no point ahve I felt like I was not able to breath - just a little constricted. Im switching to zyrtek and still taking the steroids and an inhaler (like for asthma) I will be seeing an allergist, but even with all the current problems I'm having they are in no rush to get me in. Basicallly I'm being told its just something I have to live with until {hopefully} it goes away again and to go to the emergency room if needed.

I think stress has something to do with my problems, as there is considerable stress in my life right now and I have noticed it gets somewhat worse if I get upset.

I would not wish this on my worst enemy.

[HVACGUY]

Partial lip & 1/2 tongue swelling for about 7 years (typically left side) and happens while asleep, comes and goes with no explanation. Ruled out all the foods mentioned, meds, vitamins, latex, insects, stress, being tired, etc, etc, it will still occur.
I have had best results with daily zyrtex (Cetirizine Hydrochloride) & Prescribed Cyclobenzapr 10MG, If I don't miss a does which I take at bedtime, seems to stay in check, If I miss a a day or week or so then it'll start. Strangest thing.
No one has mentioned chewing tongue which I've wondered if in a deep sleep one could gnaw on the tongue or lip???
RB

[sunshineandseas]

i am glad that i am not the only person who has this problem. my problem started with a bad case of poison ivy that i had. it took three weeks for it to go away. i used ivydry to dry up the poison ivy. a week after the poison ivy dried up and scabbed over, i started getting random swelling. first my tongue swelled up. scared me to death. but it went away. then my hand swelled up and it went away. now my lip is all swollen. i missed another day of work (ugh) - can't go out in public looking like this. i also have welts on my body that itch. i am very health conscious - exercise, eat very healthy - try to eat a natural foods. don't know what's going on. but i am going to the doctor today. i don't feel so alone now after reading this website as now i know there are other people out there who have the same sypmtoms that i have. i don't like to take drugs because they only treat the symptoms and not the cause. but i have no choice as i have to go to work. so i am going to go out and get some benedryl and hopefully that will make the swelling go down.

[sunshineandseas]

has anyone else had the swelling issues after having poison ivy or using ivydry to treat it?

[TazMac]

Well. I have been told I have chronic idopathic urticara angioedema and like all of you that diagnosis does not help. Yesterday I started to have swelling on the right side of my tongue and above my right sinus. It progressed to my lip and this morning my whole face is swollen from my cheekbone donw and my two lips are huge. I have been experiencing these reactions since 1991, so for 18 years. I ahve had huge hives on my arms, legs, feet, swollen fingers, toes and most often a swollen uvula, and the right side of my throat and tongue. The lip swelling and above my sinuses is frequent too. I have a colleague who said her husband had similar throat reactions to me and was tested and has Celiac disease and now that he has cut out gluten he is fine. I am going to the Doctor today to investigate this iption. I also wonder about the mention of Ludwig Disease (Dental) from someone above. It seems to be that all my reactions started in 1991 two weeks after I had been stung on the side of my neck by a wasp, but also in 1991 I moved away from home and while going to the Dentist still happens it is not as frequent as when I was young and loived with my parents amd went every 6 months. I know at this time I have not been to the dentist in two years. So I am also amking a dentist appointment today. If after these apointments there are any revelations, I will report back to this group. I hope you all go incident free. T

[Pooh2000]

My hives are usually lip swellings that start during the night.  Like a lot of you, I've tried several remedies, as well as trying to figure out the cause.  I've come to the conclusion that the cause is a combination of two or more things.  In other words if you are exposed to a spice and not stressed.......no swelling.  If you have spicy foods, stressed.....lip swelling!  It could be some other "trigger" besides spicy food.  I do believe stress plays a significant part, but it takes "two" components to make it happen is my analysis.  I've been able to control mine with 60mg Allegra/day.  If I do have an attack 180mg Allegra, then an hour later 600mg Tagamet usually makes the swelling start down.  My worse attack ever was a month ago......none of my meds stopped it.  It ran its course in two days and was over.  I felt very discouraged since I had Allegra, Tagamet, and Sudafed in my system.  It started on one side of my lower lip, went to my left cheek, then to my upper lip, ending  in my right cheek before going down.   The only good news is that when my upper lip is going down, I look pretty good.....as if I've had Botox LOL.   It's nice to know I am not alone with this affliction.....we should all post our pix at our best :-)

[jetski690]

After suffering from swollen lips during or after sleep several years ago mine vanished for many years only to return a few weeks ago, not as bad as before but still annoying, that has lead me to Google once again and glad I found this forum. I too could not put down too any one thing I've had taken, any allergy or anything else, I'm not really stressed and nothings really changed for me from when I was not getting the swelling's ,but one of the suggestions at the top about dentistry suddenly hit home for me, as a few weeks ago I had a filling the first one for years and suddenly my lip swellings has come back, could it be the actual mercury in the fillings which is affecting our body's in different ways. I think Jack20's post on Nov 27th 2007 might of hit a cord for me anyway.

[vb1960a]

My allergiest ran tests and I have Hashimoto's and IgE mediated idiopathic anaphylaxis  - determined by a 24-hour urine analysis test.  The basophil receptors on my mast cells mistakenly register new things in my system as antibodies and cause the anaphylaxis.  Maybe some of you should ask your doctors to pursue this course of action.  I take Zyrtec and Zantac 2x-day to ward off any attacks.  So far I have a few break-through times, but the majority of the time I am anaphylaxis free.

[blondie4779]

WOW!!  I just read this whole board and im in shock that we are left wondering how to contol this.  I have been experiencing all this swelling for about 5 months now.  I have an occurance of swelling about once a week up to twice a week.  Sometimes i will go a couple weeks without any swelling and i think its gone.....but its not.  First m tounge swelled up (half of it), then my right foot (bottom), Lip(bottom), palm of hand up to about an inch above my wrist, my throat, my uvula to the point i woke up choaking on it.  Went to ER that time.  after these swelling i have experience about 5 more swellings in my feet, 4 more of my lip, 4 more more of tounge, never again in my throat.  according to allergist i am allergic to nothing.  she said its really not an allergy at all cause there has to be a trigger for it to be an allergic reaction.  Ive tried everthing.  Im very fristrated.  I have the steroid, which i dont think does anything except give me headaches, i have taken the antihistimine everyday and still have the swellings.  I dont know what else to do.  It seems to be happening more at night then anything.....at 7pm to be exact. Last till about 8 the next morning.  This goes for my feet, lips and tounge all the time.  My issue is....its so embrassing.  This is going to happen at a VERY unfortunate time and im not looking forward to it.  I want to know what i need to.  Im sick of this.  Im sick of just waiting for the next time.  Im stilling here as i type with the bottom of my foot swelling up.  I felt it coming too.  It felt tingly and warm.  And now it gets worse and worse every hour.  It hurts to walk on cause its in the arch of my foot.  It has swelled on top of my foot which is more barable.  My lip!!!! FORGET ABOUT IT.  I look rediculous.  I cant even hid it its so big.  I dont know...im just frustrated at this point and i feel like im just getting used to it.  I cant believe no one can pin point!!!

I sympatize with EVERYONE who is dealing with this or whom has delt with this.  Its horrible and its life changing.  I want it to end i pray if does for me and everyone else.

[hollygee]

Hi all,

So I went to the dentist in Dec and started having huge lips afterwards. Randomly, and bigger than Angelina Jolie. I always wake up with them too, except once. I determined that I cup I was using contributed to the issues so  I stopped using it(the straw chemically burned the inside of my lips). But I woke up this morning with big lips again. 2 weeks after dumping the cup.  Was is the Mike's cranberry lemonade yesterday (red#40), or the sausage (nitrates) I don't normally have? Not sure. Just know Claritin and ibuprofen helped enough with the swelling that I could go to work. However, they are still plump (comments abound at work), but I no longer belong in a Jessica Rabbit cartoon or Goldie Hawn movie.

Wish this could be figured out. It all started with dental work though.

[jakester993]

I just went to my allergy specialist today for follow up on tests. Mine started around June 2008. One afternoon when heading to work, my heel began itching severly. Then the other one. By the end of the day 4 hrs later my heels were swollen rock hard and it hurt to walk on them. I thought I had accidentally stepped in something the lawn guy put out. Oh no, not that simple. Since then I have suffered multiple swellings and welts on the feet, back of upper leg, my tongue, and lips that put Angelina Jolie to shame. My chin swoll up hard as a rock. I agree some of mine occur while sleeping, but some occur during the day without any reason. I go weeks without a problem, then another flare up. I have been using Claritin ready tabs which help relieve the itching, so the swelling isnt made worse by scratching. After waking to half my tongue swollen again last week I went to a specialist. Multiple blood tests and allergy tests reveal no problems and no allergies to food or airborn substances. My doctor suggested Benadryl rather than the Claritin ready tabs as she says it is stronger. She also gave me Prednesone tabs to take when a flare up occurs along with Atarax. But she just states it is angiodema, but no known cause. I will try her prescriptives to see if they help, but they are only for use at or during onset of the problem and not really a preventative. I have had pretty good results so far with the Claritin ready tabs getting the swelling down in a couple of hours. I am going to buy stock in the company and see if I can recoop some of my money. And one last thing, I recommend asking your doctor for an eppipen for emergency use, just in case your throat swells and you cant breathe, each pen gives you another 20 minutes to get to the hospital, hopefully.  

[thoren]

can anyone relate these swellings to dental work?  The stuff they are putting in our mouths is foul.  Not just the silver fillings but the adheasives and composits.

[MissMaris]

Hi All,

Like all of you, I have angioedema.  Just FYI: There's something called hereditary angioedema that they can do blood tests for.  It doesn't much help with the treatments but it's nice to know that you know where it came from.  I don't have hereditary, just regular old angioedema of the feet, hands, lips, tongue, throat, and occasionally random areas.  My last flare was 4 weeks ago--the Dr. put me on a new med called XYZAL, which is like zyrtec but proven to be effective in people with angioedema.  So I take it every day, for the rest of my life.  So far...no flares! So I'm hopeful.  I recommend you all to at least try it.  The catch is that it's a prescription drug, so you must go to a dr to get it.  

Also: I'm going in for an endoscopy today--do any of you ever get occasional but very severe symptoms that mimic acid reflux? I do, and they said angioedema is probably the culprit.  They said something in my digestive tract/esophagus could be swelling up, and that antacids etc don't work because it's not actually acid reflux.  It could be EE, I cant remember spelling but something like eosophaginal esophagitis?  They are doing a biopsy of the esophagus to figure it out.  This condition can cause all the symptoms we have here.  I'll keep ya'll posted!

[concretenprimroses]

So glad to read all this.  Thank you for sharing details.  some are years ago so I don't know ifyou will see this.  I've had a hard time sorting out what is happening.  I have had mouth: gums palate, tongue (starting usually on one side and going accross) swelling occassionally for about 10 years but it has gotten much worse and frequent in the last year.  I thought I injured my feet lifting very heavy things and walking with them in February, but now I am thinking they are swelling from allergy even when my mouth is not.
There are also some things that I assumed were menopausal which I am now wondering about.  Pelvic pain and bleeding of my cervix probably is meno, but since there is no apparent reason according to dr.s and ultra sound, I am wondering about it too.
The first time I ever had the mouth symptoms I was using goji juice (10 years ago) so I thought it caused them.  Allergy Dr.that I visited recently didnt' think so, but so much for juice supplement preventing them!  Also interesting to read about vitamin c and acid as chewable c vitamin caused instant symptoms, during same week as goji juice incident,  about 10 years ago and I noticed other vitamins also caused them, so I immediately stopped all vitamins.
Dinner tonite planned with scallops and lemon juice so I will pay careful attention.  Feet swollen right now dispite taking a zyrtc this morning.  I decided to follow allergy sp. advice and take a Z everyday just to see if anything goes away.  Now have 2 epipens which is good because I was worried about what would happen if claritin or benedryl stopped working.  
Allergist gave me a sample of generic claritin that comes in powder form that she said I could put on my tongue and it would work much quicker.
After meeting with her I decided to limit wine to one glass, ibuprofen to 2 at a time (both make you more suceptable tho don't cause according to her).  I've had only a mild tongue tip swell which went away without meds in about an hour.  But my feet still seem swollen often so I'm trying the Zyr.  I'm hoping it will also help my pelvic pain tho seems unlikely.
I'll report and also check back in case anyone else has anything to report.
Kathy

[DELEONM5]

I refuse to live with this condition.  It has affected every aspect of my life.  The swellings started in my throat and I was diagnosed with asthma.  When I would have an "asthma attack I would end up in the ER because my rescue inhaler would not work.  I dealt with those same problems for about a year.  Costing me alot of $ in medical bills! Then all of a sudden the "asthma" went away and I started with half the bottom of my lip swelling.  Now i get swelling on bottom of my feet and the next day it moves to my hands and then the tip of my finger.  Today I woke up with a big welt on my forearm and I feel it moving to my hands. Ive been taking Zyrtec on a regular basis but Im always falling asleep at work and I have not been up for anything.  My doctor diagnosed me with depression, which I blame andiogema for.  Being on an antihistamine everyday, way beyond the daily dosage makes me feel like I have no life.  My boss and co- workers think I use this as an excuse to miss work.  I finally came in one day with my lips swollen so they can beleive me.  Im so tired of all this and Im determined to find something to make it go away permantly.  Good luck to everyone out there and I hope we can find something that works.  

[kmangal16]

Well, if you do ever find anything to cure this horrible problem that is making our lives a misery, please let us all know because the doctors don't have a clue.  I'm experiencing Elephant Man syndrome again today, swollen face and lips and really don't know why.

Is anyone doing any research into this thing?

[Dirtracer94]

Hey all, i to have been dealing with swelling lips, tounge, fingers, toes, and sometimes even my arms will get red and swell abit in areas. im 23 and this has been going on for about 3 or so months. Docs dont know what it is and i feel it is related to stress. Alot of stress has been going on since this started. Benadryl does not help, my swelling stays for about 24 hours then goes away. my doctor did recommend i try a heart burn med. they have ranitidine in them. I used it and my swelling did go down pretty quick. of course i swell up today and i dont have it with me... I have not be to a dentist so i dont beleive it is related. blood test are good. i have never had an allergy to anything ever. Still I am on the edge of this being caused by stress. Some one needs to come out with a comfortably numb pill!!! haha But for the moment see if a heartburn med with ranitidine in it will help.

[ness56]

I'm so glad that I am not the only one going through this horrific experiance. I am 27 and have been suffering from swelling of my lips, face, arms, fingers, and chin for more then 5 years. It usually accures in the middle of the night and by the time I wake up parts of my body are swollen to 3x there normal size. I have been to emergancy room, doctors, and specialist and nobody knows what is wrong with me. I dont have insurance so I am unable to get any proper testing done. This condition has mad me sad and almost leaves me feeling hopless. I have 2 small children and am terrified of something happening to me. The most recent attack left half my tongue swollen. I took some Benadryl and it took 5 hours for it to go down. Thank you for your posting now I know that I am not alone in this thing that has taken over my life.

[Canada101]

Every post I read here I can relate to in some way! it is scary when the doctor/doctors tell you that they don't know. I have been however been buying a frozen mix of blueberries, rasberries and blackberries.  Take 3 cups and some ice and water and blend it. I take this for breakfast everyday for three months and it seems to be keeping my hives very small as my hives used to get very big, one covered my whole side of my chest to the back and my entire thigh, took weeks to go away even with all the drugs. This can't be good, taking all these drugs, prescription or not. I'm determined to try and not take anymore and test out some mushroom called Linf chieg Staghorn to fight autoimmune related issues. No these are not the funny mushrooms lol...

I will keep researching and If I come accross anythng I will definately post here. Here's to hoping that my frozen drink and Staghorn mushroom will help this get better.

From Canada

[Allie501]

Wow.  I feel like I've finally hit paydirt.  Have been googling for months about this swelling condition, to no avail.  Then, today, voila---I found this site.  When one's throat is closing off, knowing others are afflicted doesn't help at all.  When NOT being thus traumatized though, hearing all the lay theories is VERY interesting!  Hi all you non-hypochrondriacal fellow-sufferers  out there!!!!

My swelling started at a very stressful time in my life last year;I also had just been stung by a wasp a few weeks prior to the first swelling; dental problems for me are a given; I'm on a baby aspirin regime as per docs orders; and on a visit to the ER  for tongue swelling, the doc muttered something about subclinical hypothyroidism.

I'm going to try getting off the baby aspirin first and see if that helps. Will keep you all posted with the results.  Fingers crossed!

[a_Moon27]

I have crack lips. Painfull and occasionaly blod comes out. Applying lip gloss probably increase the allergy. I saw some small round granular swallowing in the innerside of lower lips.
Could any one advice me the OTC medications, I must use to get rid of this. Please help me.

[raycharlesfreak]

Add me to this very long list.  Though there is comfort in not being totally alone in this strange place, I am sure we all would like a magic pill that would make it go away.  

Mine started about six months ago with a sudden swollen tongue one morning.   Assuming it was an allergic reaction to some dried cherries I consumed earlier, I took some benedryl which brought it down within a matter of hours (not minutes, unfortunately.)  I didn't hear from it again until around three months ago when it happened again in the wee hours and much more severely, such that I took myself to the ER for a three hour stay where they administered all the usual suspects (epinephrine, benedryl, etc.)  The ER phys dx'd as Angioedema and gave me a script for Medrol (prednisone).  They wanted to admit me, but I refused and went home after it began to subside.  

Since then, it has been a roller coaster ride for sure.   I have only been able to control it with the Medrol (which really *****...)   Finally saw my primary yesterday (my life is complicated) and he sent me for the usual blood tests.   He insisted that I begin taking claritin and attempt to control it with that instead of the pred.  I fully understand that, and am giving it a shot.  Woke up this morning and my soles are feeling that way, thickish, a little tender.  Not bad, but we'll see how the day goes.  

I want to make this point, in my case.   I have been taking aspirin everyday for the last 15 years, first thing every morning.  Last weekend, I noticed that after taking the aspirin, a few hours later it came on big time, involving my feet, hands and tongue, which sent me reaching for the pred which I'd tried to leave out.   I have a suspicion that the aspirin may indeed be the trigger.   I have had none in the last 48 hours and no pred, just the claritin.  As I mentioned, my feet are slightly reactive this morning, but not bad.   If only it is actually this simple... I can live without the aspirin.  

One last question..  out of all these posts, I note that no one has brought up the more ominous issues of underlying proliferative disease processes, like lymphoma and leukemia.  Has anyone been checked out for those?  Any data gleaned as to the statistical probabilities associated with Acquired Angio?  

Thanks for posting all the valuable info.  

RCF

[SenoraV]

I woke up this morning to a swollen lips. (Just like almost half of the people here), swollen eyelids and some on the palm of my hand. Been having this nuisance for a month and getting really worried.

I also suspect insect bites because all this started two days after I went to the beach and got bitten all over my bodies. Eversince then, the hives came when I drank liquor (which never happen before). Two episodes that had me running to the hospital emergency unit early in the morning with no apparent known causes. Its very frustrating. I never had such problems before.

Could it be insect bites?
Could it be thyroid problem?
Dental problem?

Why does it occur now when it didn't before? Something is definitely not right.

SenoraV

[gubbygirl]

Dear fellow sufferers,
This condition is a real drag isn't it? It is comforting to read all your stories and to get ideas...and hopefully we can figure this out??. My face and my tongue swells.I have had to miss work frequently. I have suffered with eczema since I was a child. Funnily enough when I went to live in tropical weather a for 5 years my symptoms pretty much disappeared, I live in Melbourne-  a high allergy city. I know that on hot northerly days the winds bring grasses and pollens. I sneeze, have black rings under my eyes, have a bad memory, bloat,get wind, and feel very tired after eating at night. Most others get hay fever but I seem to swell. This happened to me also after being at the beach one day..and I wasn't and haven't been bitten by insects ..so I don't think insects are the cause. I think diet does help any condition so I usually try to go on a serious green and vegetable diet. I do feel better but I find it hard to sustain.  I have tested positive in allergy tests to grasses,moulds,and some foods...I had desenitization injections. I think they helped..but the symptoms then change.
I wish you all the bst of luck . Please keep posting when you are getting it ..what you are eating and breathing, the doing etc...so many factors! Maybe it is none of these and something we will have to learn to live with.I hope not. Chinese Dr.s have not been able to help, not naturpaths in my case.
I am going to get my throid checked too and will get back to you with results. Just keep on trying and I hope we all get better soon!

[militarymama]

Had very similar symptoms as all the ones listed.  Was fine, not allergic to anything (except fire ants), and a very active person.  About 2 years ago, I got strep throat 3 times in a 2 month period - after that I was never the same.  Everytime they perscribed me antibiotics (that I had taken previously) my symptoms got more severe - until it turned into full blown angeoedema.

I'm on the usual regimen of Allegra, Zantec and benedryl as needed. Klonopin for anxiety attacks related to the constant sever pain in my throat.  But no answers - tested for EVERYTHING.  I'm active duty military and had a great doc that was willing to test me for every disease out there and every allergen out there with NO results.

I have symptoms every day, flushing, early morning swelling (worse if I'm ill or near my period), food sensitivities out the ying yang, heat sensitities, migraines, debilitating sore throats.  I can't exercise, can only work half days and am currently being discharged from the military after 15 years because I am no longer fit for duty.

I finally went for a "second opinion" from a new allergist and he has me set up to be tested for Mast Cell Activation Disorder (or Syndrome).  I recommend you all look it up and see if you have some of the corresponding symptoms that go along with this.  I also developed Chronic Fatigue Syndrom (syndrome) at the same time as the angeodema and alot of the the symptoms of the Mast Cell Activiation Disorder overlap with the CFS.  I honestly believe a mast cell disorder is at the center of all my issues and now that I have been doing more research, I'm finding more linkages with mast cell disorders and CFS.

There is no cure for MCAD, but I would pay a million dollars just to KNOW what I have and be able to move on from there.  

Good luck to all of you - I feel your pain.

[marysway]

It has been wonderful to read all this. I was in tears tonight as my husband has had his third tongue swelling in 2 months. Started around Christmas 2011 and he thinks it is some horrible underlying cancer or something. It was so great to read all your contributions. Sounds like there really is no known cause but I'll get him to stop the daily aspirin and maybe try some of your suggestions re daily zyrtecs and new drugs.  Please keep posting. We thought we were the only nuts on the planet with this scarey Shrek tongue thing. Sounds like so far none of us has died of the scarey throat closing. That is what scares us anyway. Prayers for you all that one day we'll figure it out.  Mary

[raycharlesfreak]

You can read my post above (Aug 17, 2010).  I had been suffering all of this strangeness just as everyone here seems to be.   I wanted to let you know that the random swelling(s) that were a constant threat have at least at this point subsided.  After a lot of research and reading, I found a doctor who was able to help me.  There is another site online that is called the road back forum which consists of many who are suffering with these maladies.  There is a therapy called Antibiotic Protocol, an old school rheumatologist therapy with which a handful of doctors are having success.   I was extremely skeptical, but after going to four or five doctors in Los Angeles, including top specialists at UCLA, who were not able to help me(!), I began to dig a bit deeper and look at this more seriously.  Thankfully, I found the right doctor who evaluated me extensively and over the course of a couple of two-three hour exams, including an array of blood tests, and started me on this therapy.  In about three weeks, my symptoms began to disappear and to this date I am still symptomless.   It is a long term therapy, and trust me when I tell you, I don't care how long it takes after going through this.  I truly did not believe that I was going to ever feel normal again.  I could not make any plans to do anything for fear of having a flare up.  I'm sure many of you can relate.  

Anyway, I sincerely hope this will help some people here.  I guess I am "paying it forward" so to speak.

Good luck.

RCF

[idontknowwhatthisis]

watch mystery diagnosis.......The Man with Hundreds of Lumps the same thing was happening to him!

[teenalhall]

Today was the 2nd time my daughter's lower lip has swollen just on one side. After the 2nd trip to the ER FINALLY a DR told me he thought it was angioedema. He said he hasn't ever seen it in a 12 year old but it could be. She breaks out into small hives once in awhile but never linked the 2 together till now. Benedryl don't seem to touch it. Right now she is on Prednisone. Is there anything else that can help?

[Matt_Clark]

Well I have not had a swelling for 2 and 1/2 years, and today they returned, I woke up in severe pain in my groin, went for a shower this morning, and for the first time it attcked my manhood! I am so embarrased that I really dont know what to do. I am in quite a lot of pain, and my antihistamine so far are not doing anything. So so gutted, I thought they had gone forever.

As I type, the tingleing has returned in my hand, and I am sure one will appear very soon. So upset I could cry!

[Matt_Clark]

Went to the doctor yesterday, who has given me a course of prednisolone to take. 30mg a day. I have not seen any effect yet. The good news is that I havenot as yet had another swelling, I have stayed off work and rested, as I think mine may be caused when I am stressed and run down.

Hope to be back to normal by friday.

[colosado]

I am a 64 yr. old woman who has had this condition for years...first a reaction to penicillin, now I am not sure what causes this.  I have swelling in my lip or tongue (always on one side or the other, which I don't understand) and sometimes spreading out to my cheek and/or chin.  The worst reaction was about 5 years ago to a z-pack that I was taking as a prescription from my doctor.  My swelling often begins with swelling in the palm of my hand, with extreme itching.  The worst episode was swelling in my hands to the point that there was no space in between my fingers when I spread them (my hands looked like huge softball mitts).  I got huge swollen blister-like pads on the soles of my feet, an egg-sized lump that I could actually move from side to side under one eye, and horrible painful swollen lumps all over my scalp. I am a grown woman who normally can take a lot of discomfort/pain, but this nearly all-over-my-body swelling was horrible, and I made an emergency room visit when my mouth, tongue, and throat began to swell.  I was given a steroid shot and some of the swelling went down there at the hospital, but it took 2 days before everything went away.  I cannot ever isolate anything that I have eaten or come into contact with that might cause these episodes, other than the original time after the penicillin.  Most episodes last several hours, building up slowly and lessening slowly.  It does seem to me, though, that they come during times of high emotional stress.  I will add that I have had a very fortunate life of good health except for this strange and frightening ailment.  Sometimes I feel like it may be linked to my immune system as a cousin of mine has a similar condition which his specialists have diagnosed as a genetic immune system problem where the body is actually allergic to its own immune system and actually attacks its own self.....in a sense it is an immune system that works too efficiently.  That might explain why my swelling seems to come when I am going through a lot of stress.  Is there anyone else out there whose conditions are like mine?  Doctors just seem to pass it off as an allergy to "something' ....I don't think it is that simple.

[colosado]

I am a 64 yr. old woman who has had this condition for years...first a reaction to penicillin, now I am not sure what causes this.  I have swelling in my lip or tongue (always on one side or the other, which I don't understand) and sometimes spreading out to my cheek and/or chin.  The worst reaction was about 5 years ago to a z-pack that I was taking as a prescription from my doctor.  My swelling often begins with swelling in the palm of my hand, with extreme itching.  The worst episode was swelling in my hands to the point that there was no space in between my fingers when I spread them (my hands looked like huge softball mitts).  I got huge swollen blister-like pads on the soles of my feet, an egg-sized lump that I could actually move from side to side under one eye, and horrible painful swollen lumps all over my scalp. I am a grown woman who normally can take a lot of discomfort/pain, but this nearly all-over-my-body swelling was horrible, and I made an emergency room visit when my mouth, tongue, and throat began to swell.  I was given a steroid shot and some of the swelling went down there at the hospital, but it took 2 days before everything went away.  I cannot ever isolate anything that I have eaten or come into contact with that might cause these episodes, other than the original time after the penicillin.  Most episodes last several hours, building up slowly and lessening slowly.  It does seem to me, though, that they come during times of high emotional stress.  I will add that I have had a very fortunate life of good health except for this strange and frightening ailment.  Sometimes I feel like it may be linked to my immune system as a cousin of mine has a similar condition which his specialists have diagnosed as a genetic immune system problem where the body is actually allergic to its own immune system and actually attacks its own self.....in a sense it is an immune system that works too efficiently.  That might explain why my swelling seems to come when I am going through a lot of stress.  Is there anyone else out there whose conditions are like mine?  Doctors just seem to pass it off as an allergy to "something' ....I don't think it is that simple.

[arora827]

hi,

can someone tell me the salt of NIACIN as i am not getting tablet with this name.

arora

[arora827]

hi
can you please let me know the name of the juice suppliment you are using with its ingredents.

thanks

arora

[arora827]

HI

i am also having almost same problem. i have also shown to many doctors. and also got allergy test.

finally, they all came to decision that this problem happened to me when my stomach was not in order. this also happended whenever i had constipation. earlier my lips used to swallod but i have started taking homeopathic medicine here in India and since than i did not have problem of swallod lips but still i have other problem like swalling of fingers, toes, under the feet etc.

i have also noticed that whenever i take almond or walnut, i get this problem. i also get this problem whenever i take cauliflower. so i have started avoiding it.

presently, i am taking homeopathic medicine namely ALLERGY, REPL DR. ADVICE NO. 9 SINCE LAST 15 days and i feel quite comfortable with it.


pl. suggest some medicine or anything else which can help me out. my email address is ***@****

thanks

arora

[Dawnie1480]

It can be acquired Angioedema (allergic) and not hereditary. If an epipen or allergy meds help it, then it's generally considered acquired angioedema. If you're having the lip/tongue/eyes/hands/feet/throat/etc swelling  (google photos of it) and an epipen or steroids (prednisone, etc) doesn't help, then that generally indicates it's hereditary angioedema. There is also a blood test they do for hereditary angioedema wherein they check your C1, C3 (I believe) & C4 levels. Hereditary angioedema is thought to be caused by malfunctioning/insufficient C1 protective proteins in your blood. The swelling is due to fluid leaking from your blood vessels into the connective tissue.  

I just started having this issue a few weeks ago & for almost 2 weeks straight (save for one day) I had swelling in my lips (top & bottom, left & right halves, at varying times) varying in size from a pea to a sausage link (it got alarmingly big), swelling on my face in various areas, swelling on my hands/fingers, and hives all over my body with welts ranging in size from a pea to a grapefruit. I haven't been able to identify what caused it yet (I'm starting to think it might be a BPA allergy, as I had just started drinking bottled water every day around the time it started). Nothing had changed in my home (products, etc) or my routine during that time (other than the water thing). Could also be related to emotional stress, as I was under a *lot* of that at the time. Pending an allergist appt myself to get a scratch test done; hopefully that'll shed some light. For now, Dr. had me on prednisone for 8 days & RX Cetirizine/Zyrtec (10 mg @ 2x/day). Haven't had an outbreak sinec starting the prednisone/cetirizine, but also stopped the bottled water the same day, so who knows.   - Dawn M.

[Lehle]

This sounds EXACTLY like what I have.  I also have a sore throat about once a week with swollen glands.  Sometimes It feels like food is getting stuck in my throat and is really difficult to swallow... Like I can't breathe even though I can.  Sometimes it even causes joint pain mostly in my wrists and shoulder sockets.  I've been to the doctor about 4-5 times, they say it's allergies.  Most of the time, the hives look like bulls eyes, and it's not lymes disease.  Other times they are small red raised bumps.  And other times, they're in no specific shape, but larger.  I've seen an allergiest, and had a scratch test for 24 common triggers, but all came back negative.  I have no idea what's wrong with me.  I have yet to see a dermatologist, but at this point, I think it's an autoimmune disorder that will probably go undiagnosed.  If anyone has any information on what I'm dealing with (This has been going on for about 6+ years.)  And like the post above, I had ZERO problems my entire pregnancy.  Does anyone think it may be related to smoking???  Please help!  I'm desperate at this point.

[booboo1955]

Add me to the list

Early October I messed up my knee and limped around for about 3 weeks and went to the doctor.  He gave me a one time a day anti-inflammatory med, Meloxicam rather than taking mega amounts of Aleve or Advil.  Took the Meloxicam for 2 weeks.  Knee was better but still hurt on the inside so the doctor gave me cortisone shot on Nov. 17.   On Nov. 18 I was awakened by terrible stomach pain which lasted about 5 days.  I took over the counter ibuprofen for it.  Early Spring I had a gall bladder ultrasound because I’d had some pain in my stomach and it was okay – no stones.  The pain I had on Nov. 18 was worse than any stomach/upper chest pain and almost went to the ER but didn’t.  I did call the Gastroenterologist and they gave me a HIDA scan on Friday, Nov. 25.  The HIDA scan was okay.  So the Gastroenterologist diagnosed GERD and gave me Omeprazole to take for 2 weeks.   Two weeks was up last Thursday, Dec. 15.

On Friday, Dec. 16 I was at work and had a major allergy attack  I have had allergy attacks when I’ve eaten corn, grapefruit, oatmeal, chestnuts, shrimp and didn’t have any of those foods that morning.
(I did not take an Omeprazole that day).  Started with a little pain in my upper chest and my palm was itching.  I took Ibuprofen and the pain stopped but by then I had a hive under my chin and my right cheek began to swell.   I then took a Benadryl.  Within an hour swelling started in my lips and I left work.  Got home, took another Benadryl.   My lips were really swelled by then.   Benadryl started to work and by bedtime I thought the allergy had subsided and I was over the worst.

Early Saturday morning I woke up about 3:30 with chest pain off and on and the top of my hands were swelled and also some swelling in my eyes.   The chest pain (worst I’d had) and the hands swelling really worried me so we went to the ER.   They did a cardiac blood workup and it was okay.  They gave me prednisone and within minutes the swelling went down.  They told me to take 2 Benadryl’s every 6 hours and prescription for prednisone which I didn’t’ take because I had been told by my heart doctor that maybe the cortisone shot in my knee was the culprit of  the major stomach pain I’d had after I’d had the shot in my knee.  They said to see my primary doctor and get an Epi Pen.  Went home, good to go (I thought) and woke up early Sunday morning around 3:30 with my tongue swelled and the bottoms of my feet felt like I was walking on cushions.  It was time for my Benadryl so I took it and within ½ I felt better.  

Ok, went to the allergist.  He did about 20 food testing and I was NEGATIVE!!!  Total shock since I cannot eat sweet corn, oatmeal, grapefruit, cole slaw without hives, swelling.  He diagnosed the chronic angiodema which is strange that it’s “chronic” when I can’t remember the last time I had an allergy attack.  I avoid those foods, and I found in the past if I took an aspirin and orange and then exercised I’d have a major allergy attack with swelling/hives.  He prescribed the zyrtec and zantec and I have a bottle of predisone if I need it.

The allergist also mentioned autoimmune diseases and I have hashimotos and fibromylgia (fibromyalgia)…

I just know that this last episode scared the crap out of me.  I had a heart attack in 2001 at the age of 45 (with no health issues other than the fibromylgia (fibromyalgia)), we think maybe the vioxx I was taking for the fibro may have caused the MI so I see a heart doctor once a year.  Only med I’m on is a beta blocker for it….

[JaneDoeDeer]

Cut out wheat and see what happens.

[JaneDoeDeer]

Is it Xtra from Univera?

[JaneDoeDeer]

It may be "Xtra" by Univera.

[Veronicadavis]

Same exact thing happens to me to a T.  Tongue, tonsils, walking on rocks, huge burning hard welts, finger tips swell, and yes went completely away when i was pregnant and as soon as she came out that next morning it started up again.  I would really like to keep in touch so we can hopefully find the cause out.  I can only narrow it down to hormones I can't see it being anything else.  It is soooo frustrating.  My insurance ends in 2 days looking for new insurance.  Labs and specialist appts. haven't helped besides the fact that they say I have an allergy. duh

[Veronicadavis]

Isn't it weird how it only happens to one side of the tongue? That happens to me and also one tonsil.  I've had labwork and specialty appts, but nothing can be determined besides I have an allergy.  As a previous gal posted it completely 100% stopped when I was pregnant and for me it came right back the next morning after I gave birth.  Hormones? I don't know it is frustrating and happens randomly all over my body from swelling to welts.

[Veronicadavis]

wow your 2 stories hit home for me.  I stress very easy( i've been working on it and it has gotten way better) and I played competitive tournament softball my whole life up until 18yrs old.  I am now 29 and it started about 2 years ago.  The only time I went into remission is when I was pregnant.  100% gone and came back within 24 hrs of giving birth.  I have recently started my baby on an all organic way of life and am now convinced I should do the same.  Thank you .

[Veronicadavis]

how bad does your swelling get?  i get it on one side of the tongue or tonsils never both sides/whole thing.  I take benadryl and wait.  I used to go to the ER, but now I just wait it out.  Im just curious if yours is extremely worse.  I hate this it's so scary

[Veronicadavis]

yup it went 100% away when i was pregnant and came back with in one day after i had my baby ughhhhhhh

[laserg]

I first experienced swelling of my scrotum 3 1/2 years ago when I was 48. I thought I had injured myself cycling. The swelling occurred just before bedtime and my mid-morning it had dissipated. About three months later my lower lip began to swell right after I woke up. Within and hour it was extremely swollen and I went to the emergency room. The attending ER said it was a reaction to my blood pressure med, lisinipril, which I had been on for over two years. They gave me NOTHING and tried to admit me. I left in the afternoon after the swelling subsided. I have had at least 3 or four more episodes (took an epipen shot for one while traveling in San Francisco) during the past 2 years before this past week.

On Monday morning I had a slight swelling of my lower right lip, I took a couple of benadryl and it seemed to go away. On Tuesday morning my lower left lip started to sell so I injected myself with an epipen and it seemed to work, however the swelling continued into Wednesday and traveled in a complete circle around my mouth. Wednesday night I began to get a dry cough deep in my lungs. Over the course of the night I felt it move up my lungs and by Thursday morning it was in my throat which began to swell - totally weird. It was as if a virus was literally walking up my lungs in 6-8 hours to my throat, I could feel it moving, my uvula was huge. I took two more benedryl and the swelling went down. My chest cold became more sever Friday after I developed a mild case of hives on my neck Thursday night (never had those before). Saturday and Sunday I just had a chest cold and cough. On Monday my scrotum swelled for the second time ever. By Tuesday night that went away. Friday morning I had some irritation on the left side of my tongue and at noon I ate some chocolate and half my tongue swelled. I just took two more bebdryl and it doesn't seem to be getting worse.

What the hell is going on? I have been incredibly healthy my entire life until this started three and a half  years ago. Not allergic to anything except penicillin In January I climbed Telescope peak in Death Valley, (11,049 ft) with no problem. I am 51 and looking for any ideas/suggestions. Thanks.

[jack5333]

A little late but here is my story. I'm almost 65 years old and I have had this ptoblem about 12 years. I've been through all kinds of allergy tests and no allergys (allergies) gave been discovered. A doctor put me on a reactin tablet (20 mg.)
every day and that seemed to help for a long time but it doesn't help much anymore. I was told that it can be triggered by a number of thngs including heat, cold, alcohol, stress and a host of other things. It almost always happens when I am asleep and I wake up that way. With me it is amost always the lower lip but can be the tongue (left side) swollen, hard fingertips and ocassionally the penis (left side). Just in case you or anyone think that might be a benifit, it isn't. It is gross looking (not hard)
Lately it seems to be getting more frequent again although first when I got it I was told that it ususlly lasted about 5 years on average.
Hope you are better.
John

[bellawella223]

hi! i am interested in knowing what this juice is...i am having problems with swelling etc...thanks

[Blkrain]

I seriously thought I was the only one suffering from Random Swelling.
Over the last seven years, I have experienced swelling mostly on my lips, inside of mouth, cheeks,  thighs, butt, under my foot, and my wrist.  It can happen about two weeks to a month apart, then it won't happen again for months. The crazy thing is it will swell on the right side for example and then the next episode would be on the left side.  The swollen area is itchy and most of the time it move from one area to another. Lasting past 24 hours before it’s completely gone and Benadryl do not help. Most of the time I go to the doctor for a steroid shot to speed up the process.  I am so aggravated with this swelling because it is all of sudden.  I am afraid as to what will or could swell next. I wish there was answers because these episodes of swelling are annoying. Please contact me if you would like to share more information (quetta34yahoo.com)

[gardengirl1]

Just happened to me recently. Had a bad case of poison ivy about 3 weeks ago and then last week had swollen top lip and then a few days later a swollen bottom lip. The first lip took almost 2 days for the swelling to go down, but I put hydrogen peroxide on it and used an antbacterial mouthwash, along with taking Benedryl and that helped. When the bottom lip started to swell, I put hydrogen peroxide and the mouthwash right away and the swelling went down after a couple of hours. I think I scratched or picked a scab and then unknowingly touched my lip. That's the only thing I can think of, since I didn't consume anything similar both times.

[Suzie0711]

I started getting severely swollen lips when a new roommate was washing clothing with perfumed detergent and using those dryer sheets.  She would put her towels in the cabinet next to me and fill my room with these chemicals.  I have had chemical allergies for years and everything I use is dye and perfume free.   But now, I am sensitized to the chemicals (perfumes) in those laundry products and am swelling during the night from just inhaling as I walk past the laundry room, or if the winds blow the laundry exhaust into my apartment, which is often.  At the first sign of swelling (usually around 5 AM) I take Benadryl (one because I am over 60 years old, two capsules are not recommended if you are over 60) every 3 to 4 hours.  I have to wait 24 hours for all the swelling to go down.  I suggest you, and everyone who has these swellings, investigate for contact with the perfumes/dyes/chemicals in anything like laundry, makeup, dish soap, or cleaning products.  See if avoidance stops the swelling.   This is a huge problem.  Americans' quest to perfume everything out of fear of being smelly is causing these reactions.  I evangelize people constantly about stopping use of these products even if you don't have symptoms, because these products cause cancer in the long run.  NO DYES OR PERFUMES, AND USE BENADRYL (WALDRYL IS CHEAPER ALTERNATIVE AT WALGREENS)...

[suezq18]

I had a severe reaction to cephalexin also, and ever since that time,  I get the swollen lips and fingers quite often..It starts with my lips, then fingers and hands..I get big red welts that burn and itch like crazy on parts of my body like waistband, under my breasts (bra line0, panty line..back of knees and forearms..I also get histamine bumps on my hands, head or hairline..benadryl, hydroxizine, and zyrtec are what I have tried..I usually end up in the ER for a shot when my esophagus swells up too much..It feels like a knife stabbing me between my breasts and that there is a huge air bubble in my throat..I don't know what is causing this, only that it happens all the time..I also have Hepatitus (hepatitis) c to which I was attributing these signs..That made no sense , though..now that I know I'm not alone it seems to take some stress off me..The more I stress the more symptoms I have...HELP ME PLEASE !!!  Anyone????  Suggestions??   Thanks--Sue-z-q

[suezq18]

YES...I also have Hep C which I thought was my underlying problem, but after reading all of these testimonies I'm not so sure..However..After a night of drinking,,,,on comes the swelling.

[frank12332]

Hi Jay

Try food allergy vs. food intolerance by Mayo Clinic Staff. It looks like the symptoms that we have may be intolerance and not allergy. Still looking to cure myself.

Thangs

Franco.

[WellAgain]

Watch "under my skin" on Hulu.

[cds999]

please send me the name of the juice. my email address is '***@****.

[mdmerg]

Dear Ma'am,

I read your comments pertaining to the swollening and natural fruit juice supplement.  

Would you so kind to pass on the natural fruit juice supplement recipe?

Warm regards,
Mark

[nhsoaplady]

I sure am amazed to find this forum and learn how many others are suffering with this malady.About 6 weeks ago I was smelling one of my roses and was stung or bitten just inside my mouth near my lower lip.  Since I always check for bees first before sniffing a rose, and I found none, I had no idea what stung me but I swatted at my face and definitely crushed something.  The sting wasn't so bad so I kept gardening and thought nothing of it.  About 1 a.m. that night I woke up with swollen lips and face and numbness.  Not knowing what else to do, I got up and took 2 aspirins and my morning I was nearly normal again.
A week later my right foot started itching on top and within an hour it was swollen so badly I couldn't walk on it.  Again, took 2 aspirins and within a few hours it was better.  But over the past 5 weeks I've had swelling in the other foot, my lips and my tongue.swelled so badly I went to the ER and got hooked up to IVs.  I too was told it was angioedema and I should go see an allergy specialist.
I am 60 and have been stung several times before but have never had this kind of reaction.  I already owe the hospital a bundle and do not want to go through all the allergy testing only to be told they don't know what's wrong with me.  This afternoon my tongue started swelling again, but just one side this time (before it was my entire tongue).  I took 2 benadryl tablets about an hour ago and already I feel the swelling is subsiding.
I too am totally baffled by this.  I do not want to live on antihistamines the rest of my life and am a firm believer in naturopathic medicine.  At this point, I am thinking of seeing a naturopathic physician to see what he might recommend.   I CAN tell you this much... NONE of this ever happened to me before getting stung in my mouth 6 weeks ago.   But I hav no idea what stung or bit me.  
I sure would appreciate any advice or help in the naturopathic route that anyone could offer.  Please contact me through my website at www.catsinthecradlesoap.com

[BigHokieMama]

I just stumbled upon this site and I am so thankful! I have felt like I am crazy for years now. I have been diagnosed with idiopathic angioadema. The only time I have ever been in remission is with pregnancy!
It all started in college about 6 years ago. My tongue started swelling and I felt like I could not breath.  I went to the ER and was treated and felt good.  It took me about a week to feel back to normal. Then, it all happened all over again. This went on for about 6 months and I continued to go to the ER every week or two and they thought I was crazy! It is always worse with lack of sleep and stress. I saw many allergy specialist. I have been on Allerga, Zyrtec, Singulair, QVAR inhaler, and nasal sprays and they help, but every fall I become very ill. Every time I go to the doctor for a swollen, sore throat , they say looks like strep, but I always test negative.  I get really run down and nothing helps. Then I go back to the doctor and they say mono. This happens like clock work!
I just started allergy shots and have only had 3 shots and have had an anaphylactic reaction! I stress about my health issues every day and am too afraid to go out of the country. I am also scared to be alone with my children...I feel like anything could happen at any time! Any helpful thoughts or ideas?

[david796]

Will beat that in 2012. 3 AM this happens almost every night like clockwork.

2 x 180 Allegra everyday
Prednizone if I can catch it early and avoid pen.

*****.

[lmlvk]

Hi there....can you tell me the name of the juice and where I get it?

[lmlvk]

I also had a bad case of poison oak....in my case....and now I seem to have this randomn lipswelling, foot swelling and eye swelling thing. Wonder if that is still in our system.

[lmlvk]

Yes...me

[Marilynn4711]

I have been diagnoised with an auto immune disease but don't know what is causing it.  @ Lypus test came back positive - two came back negative.  Dr's (all types ) say I have thrush (bacterial infection).  Had biopsy's taken in lower lip which showed thrush which  is caused from bacteria in the system . I had sores & swelling of my mouth for two years until I started taking 'Yeast Cleanse" found in health food stores.  It has rid my mouth of sores but eating out will sometimes cause swelling of the lips and tongue in the mid of night.  - Yeast Cleanse" helps it to clear quickly but I am wondering if there is something in restaurant foods that keep this coming back?

[Sharko]

I'm 29 years old, never had anything more than seasonal allergies. Just had a baby 4 mos ago and was breastfeeding. 2 weeks ago after eating a piece of Hake (white fish) had an anaphylactic reaction - received 2 shots of epipen in ambulance and was hospitalized for 2 nights. Stayed on prednisone, zyrtec, and pepcid for 1 week and 3 days. That last day, I decided to see what would happen if I stopped the zyrtec - immediately starting getting early symptoms of anaphylaxis - stomach cramps/diareahha, swollen tongue, throat swelling and mouth tingling. I quickly took zyrtec, 2 benadryl and 2 prednisone and was able to stop reaction - didn't need epipen this time and avoided going to the hospital. Blood work from hospital show no allergy to white fish and negative for scombroid fish toxin! I'm taking zyrtec and pepcid 2x a day but my tongue and throat is still swollen - never went down from first incident. Can't do skin tests bc I can't get off antihistamines. Anyone have answers? I don't buy the idiopathic anaphylaxis diagnosis...

[Verchen]

Hi all,

Just started some lip swelling last week on a trip to FL.  Thought it must be something related to the floral and fauna there, but it has just happened 2 days in a row back home.  I don't have anything as severe (yet) as most of you on this site and my recent episode started with sinus pressure all day and then some slight lip and eye swelling that night, no swelling the next day but a severe sore throat and today no sore throat and a little spot of swelling on my lip.  Calling doc tomorrow to start my journey.

I can't help noticing that some of you don't have the symptoms when pregnant.  That suggests some kind of hormone thing is going on, don't you think? Maybe taking birth control pills (they make you think you're pregnant) will help?  

[Edmond23]

Every 4 weeks give or take a couple of days, my husbands tongue -left side only -swells and is red and inflamed looking. Painful and the left cheek is numb for a while. Went to the emergency room and he said, I see this all the time and it's the blood pressure medicine. So he went to his doc and went off of it for 4 weeks. Anyway, it didn't help and he has had 4 more attacks. He will take antihistamine then it goes away until the next month.

Had 2 MRI's and found nothing. Had a tongue biopsy-very painful-wouldn't recommend it to any one- found nothing. Cannot associate it to any food and the doctors do not know.

Will go off of the aspirin for a while and see what happens. I guess it's the process of elimination, trial and error.

Anyone with suggestions, please let us know.
We'll keep searching and I think the next thing is to not take any aspirin for the next month.

[RE13]

I started having angioedema face and lip attacks 5 months ago. I immediately went to an allergist, who wanted to give me an immune suppressant drug and after having tested me negative for Hereditary Angioedema, refused to give me food allergy tests to pinpoint what was going on. Two months later, I went to an excellent Naturopath who prescribed 1,000 mg twice a day of powdered Quervitin, I've been taking it for about 4 weeks and have been feeling great! I did have a minor swelling last week, but it was slight enough that only I could tell it was there. I'm no l no longer need to take Benedryl before bed. On addition, my doctor ordered allergy blood tests to check for delayed reaction allergies. Sure enough, I have them! I am already Celiac and have been gluten free for 7 years. I will meet my doctor next week and will discuss eliminating my delayed reaction foods (dairy, eggs, almonds) with the hope of reintroducing them successfully in the future. Don't lose heart people, in figuring out what is causing your angioedema. For me, Quercitin has been almost an immediate way to drastically reduce my swellings and hopefully, diet changes will eliminate it,

[Nebraskan]

I am 58 and have idiopathic angioedema.  It started 3 years ago in the middle of a summer afternoon with my lips swelling.  I thought it was something I ate but soon found out that it wasn't.  I started having random attacks.  They could start anytime of the day or night and it wasn't related to anything I ate.  Sometimes I wouldn't eat anything & the swelling would start.  Often it would start in the middle of the night.  My lips, cheeks, neck, feet, finger tips would swell so bad I didn't want to be around people because it looked so bad.  Often the swelling would start with one side of my cheek and travel to my upper lip, the other cheek and to my lower lip.  It was so frustrating because I couldn't plan anything and often missed work.  I went to an allergist that subscribed Allegra, Zrytec and Zantec.  This helped somewhat but I was still having attacks.  I kept a calendar of my swellings and their severity.  My January 2013 calendar was filled with swellings.  Finally I changed allergists.  She had me go off everything for 5 days.  I was an itchy, swollen mess when I went into her office.  She did a couple blood tests to make sure it wasn't hereditary.  Luckily it wasn't.  I went back on Allegra (180 mg) 1 in the morning & 1 at night, plus Zantec (300 mg) 1 at night and Singular (10 mg) 1 in the morning.  The Singular with the Allegra and Zantec has changed my life.  Since January 30, 2013 (the day I started with the new medication) I have had only 1 minor swelling.  The combination of meds WITH the Singular is the difference.  That's ALL of Feb, March, April, May (except the 1 minor swelling) with no attacks.  I believe the 1 incident was because of stress.  I was working 12 hour days that week to meet a deadline.  I can finally make plans for the weekend!  I had 3 long, very frustrating years with idiopathic angioedema.  I'm hoping the success continues.  I am sharing this because I hope that it will help you too.  It is worth a try.  I used to read all these posts and was desperate for an answer.  

Omaha, NE