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I am 33 and experiencing swelling on my lips and eyes. Sometimes the swelling moves to my chin. Half my tongue swelled up once as well. I get bumps all over my scalp and body. My scalp itches and so do the bumps,hives. I saw an allergy /immunology specialist who said that there was nothing to be concerned about and put me on Zyrtec. He told me to take every 2nd say after the forst few weeks. I started yesterday to take it it every other day and sure enough it came back. I am very discouraged. The Dr. did tests and said that my C4 level was slighlty elevated but the other levels were fine and that he could not say what exactly was casuing it but that I should not be too worried. Should I get another opinion? I feell like it'll never go away....

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I have these symptoms to and I think it is a something to do with hormones. Do you bite your tongue at night?
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I am 32 years old and also having these same symptoms!!!!!!!!! I take 8 different meds a day.......
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I too have had repeated facial swelling for the past 6 years. It started in one cheek, then it would be an upper or lower lip. The swelling usually occurred in the early morning hours and would last about 6 hours. I went to the Doctor who prescribed Allegra (180mg) to be taken daily. After about a year, the systems still occurred so I went to an Allergy Specialist. I’m not allergic to anything they tested for but the Specialist put me on Prednisone (steroids) and Reactine – after 10 months still no difference with the swelling, but I put on a lot of weight. I got myself slowly off the medication and now take Reactine only after symptoms occur... 3 at a time and sometimes 6 within an hour. I’ve had blood tests, allergy tests and too many drugs, with no help.

In the past year, the swelling has advanced to my tongue, and more recently to the throat. I’ve had to go to hospital emergency because of trouble breathing and now carry an Epi Pen.

The swelling continues about once a week. I’ve kept track of everything I’ve eaten, drank, toothpaste, make-up, cleaning products that I’ve used or smelled… there is no pattern. I’m a 55 year old woman in otherwise excellent health. Any advice on where to go from here, would be most welcome.
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Rosie...
Your story reads just like mine. Have you found out any other information. The dr's here son't seem to know and I am very frustrated. I am sure you understand
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I have the exact same thing. Sometimes it's one side of my tongue. Sometimes lips. This morning it was my lips and cheeks. I looked like a monkey when I got up. Terrible to have to go to work that way.
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I just got back from a specialist today too.

Same problems: Facial swelling which the doctors are saying is Allergies.

The specialist says I need to try taking one of each of the following catagories:

H1: Clariton
Zyrtec
Benadryl

H2: Pepcid
Zantac

Ie... Clariton and Pepcid together... or Clariton and Zantac together. Then if that doesnt work... Zyrtec and Pepcid... or Zyrtec and Zantac.

Benadryl as a last resort because.. Even though it works really well for me... It makes me sleepy as all hell.

But whatever the case... IM MISERABLE. And I too will be getting a second opinion.

It doesnt make sense to me that Im allergic to something, but no one can figure out to what.

There has to be something.
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I have been to ear nose and throat DR's family DR's and all they can say is that its not life threatning i have been tested for cancer of the saliva glads etc. etc. etc. you name the test and i have had it done to find out what this is i am 40 yrs old and it is very frustrating to deal with it started in the cheek area then moved to my lips then to my nassal passages then to my tounge and in the back of my throat that is not a good feeling. Nobody seems to have the answers. i have been told that alot of blood pressure meds will cause this which i have been on for some time i have taken the risk of stopping my blood presure med for a period of time and it seemed to stop but my blood presure went up again so my DR put me on another one and it has come back again. i hope for all of our sakes that maybe someone out there can find an answer.
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I have been having problems with hives and facial swelling of eyes and lips for last 3 years. I have been to 4 different doctors and I still do not have a clear cut answer. However, my hives are better taking hydroxyzine and facial swelling is better taking zantac 150 mg, 2 am & 2 pm. The allergist I have seen for last year has been the one to seem more inclined to try and get to the bottom of this. His theory is that it is connected to my thyroid with Hashi thyroiditis, my endocrinologist I see for diabetes and hypothyroidism doesn't seem to think there is a connection. However, since this allergist has began treating me with above meds my hives and facial swelling are not as extreme when they do occur and now not as frequent.

One consistent occurence that no doctor seems to think anything of is that my hives and facial occur one week to 2 days before my period. Just went 3 consecutive months without a period and had no breakouts. However, just when I thought maybe this was over along came my period and breakout. I am 43 so maybe my periods will come to an end. Most frustrating thing is it is hard to plan things, not knowing if I'll wake up with my eyes of lips swollen (not a very pretty site).
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It has been a couple of years since my earlier post... and I've been searching still. Recently I found some information and a website which led me to some local doctors. I've got a referral to see one in the fall of 2008. In the meantime, this site was very helpful and may help you too.

Copied from the website.... "Hereditary Angioedema (HAE) and Acquired Angioedema (AAE) from C1 inhibitor deficiency are generally characterized by the occurrence of episodic attacks of swelling. This swelling may affect the face, extremities, genitals, gastrointestinal tract and upper airways."

There's a Angioedema Table with information on both
HEREDITARY Angioedema and ACQUIRED.

http://www.haecanada.com/m.php?p=ediagnosis

Hope this helps some of you. Oh - when I went to my family doctor for the referral he tried to talk me out of it... until I showed him several pages of documentation that I had researched. He then said, 'you may be onto something after all", and proceeded with the referral.
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sorry - it's only been just over a years since my first post... (Rosiee) had to change my user name!

The symptoms have gotten progressively worse with time. During the first few years as I said above, the swelling would be on a cheek, or upper or lower lip and then on One Side of my tongue. More recently, I get 'hives' on my arms, legs, bottom of a foot or on the end of one or two fingers. Sometimes it feels like I've got a 'blockage' or something in my chest or high stomach area... its spreading all over my body.

Still happening in the facial area, the swelling would be on one side of my tongue and my throat. However, the latest occurrence was 'inside' my throat... not my tongue at all, but my throat closed to the point of not being able to breathe when my head was turned to one side. Off to the emergency room again!

I have been to hospital repeatedly due to difficulty in swallowing and breathing and receive IV's with Benedryl, Epinephrine and Steroids.

I've had all of my metal fillings in my teeth replaced, gone to a Naturopathic Dr. and changed diet - did cleanses, etc. and currently going to a Chinese Doctor and receiving weekly Acupuncture treatments. I'm sure I'm healthier for all of this but it hasn't changed my swelling!

In the table from the above link (website) I read that one type of Acquired Angioedema "Represents approximately 80% of AAE cases. C1 inhibitor is below normal possibly because it is consumed by an underlying lymphoproliferative disease, or an indicator that a disease may be developing."

I researched "lymphoproliferative disease" and learned that it may be a post-transplant occurrence. That really hit me, because about 15 years ago I received a cornea transplant. emedicine.com/med/TOPIC3506.HTM

I'll post here if I find anything concrete and in the meantime if any of you have found the TRUE cause, it would be great to know.

Thanks
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Wow! I can't believe some other people have the same stuff I do. I am 42 and started experiencing weird swelling of one side of my cheek (always the right side), swelling of my bottom lip, swelling of half my tongue (always the left side) and hives on my bottom that are huge! I went to the doctor and I am taking alegra, which doesn't stop it. It happens on occasion always at early hours of the morning (1 am - 3am) and wakes me up when it happens. I have been able to manage it with a pill cocktail of benedryl and 2 advil. It seems to slow it down and the symptoms go away faster..but no guarantee. I am also afraid that eventually it will effect my throat and I will need to go to the emergency room or carry an epi pin. The doctor believes it's an allergy, but it comes at weird times when I am sleeping..and not everyday. No foods, etc. I bypassed testing an am just living with it. I also have predisone, but haven't taken it.
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Hi - Rosee here again... the blood tests show that my swelling is Not due to C-1 inhibitor deficiency ... so back to the drawing boards.

The specialist wanted me to go on Prednisone (again) and I said no - last time I was on for 8 months (50mg per day) and all it did was make me fat and bitchy... and the swelling continued. Not going to do that again. I want the Cause - not a cover up of symptoms.

I learned long ago that "Pain (or symptoms) are an indicator that something is wrong. It makes no sense whatsoever, to mask symptoms.

Isn't it strange that a number of us have found this common occurrence on the Internet and the Doctors have never seen anything like it... and they don't seem to care - just take drugs to cover it up... No Thank You.

If Anyone can find the cause, PLEASE post here.

Still searching,
Rosee
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I'm another chronic sweller. Started about 12 years ago, usually in the lips, face, and tongue. Tongue so swollen you can't talk, swallow, or even close your mouth. Gross! And very painful. Sometimes occurs in chin, throat, hands, and even groin tissue. After a year of that c**p, finally realized it was ALEVE that was the culprit. The last time I took that was 4 days before my wedding, and was the worst episode ever - my entire face. Thank goodness for prednisone had the swelling down in time for the ceremony. Also interesting to note that not taking Aleve to get rid of a headache resulted in the worst headache I've ever had in my life for 2 entire weeks. Side note - Could it be that the drug companies have us secretly addicted to the stuff and I was going through withdrawls?

Anyway, after !0 years of completely avoiding Aleve and all other pain medications had absolutely NO symptoms (and no headaches!). Well, that is until about 18 months ago, the swellings mysteriously started appearing again and I can't figure out what the trigger is this time.

Getting close though and pretty sure it's the preservative Sodium Benzoate, which is in a lot of stuff. I try to eat all natural food, but still have an episode when I eat something with that and forget to read the label carefully. It's in a lot of liquids - sodas, soy sauce, salad dressings, syrup, BBQ sauce, you name it. Really a pain to have to worry about.

Sometimes I go on an all fresh made fruit juice and vegetable diet just to take a break from those stupid episodes. Once made the mistake of adding 1/2 teaspoon of soy sauce to my veggie juice to salt it up a bit. Lip started swelling within minutes. Doh! I am a small woman at 110 pounds and the huge swelling looks ridiculous.
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I just found this page today. Yesterday I woke up and noticed the left side of my tongue was swollen. Noticeable,but it did not affect my speech. Today it is more pronounceed. Very weird, it is only the left side of tongue, and not the throat or face.

Leading up to this I have had a bout of bad back, neck and hand pain from a strain begining 10 days ago. All on the left side and left hand has been very swollen and painful. 7 days ago I started with a (rash?) on my hands. They were kind of like the bumps you get with heat rash, except they had yellow heads and seemed to be filled with fluid. Within 12 hrs as they appeared they turned red (like blood under the pimple) They are still slightly raised but have not been painful.

The reason I write now is the last post reguarding Ibuprophen (aleive) I have been taking a lot of Motrin to relieve the pain. Average 800mg 3 x a day. Now I wonder is it the reason for my tongue swelling? I am willing to try anything.

I had seen a Dr yesterday and he recommended Benadryl as he thought it may be a food allergy. But if it were food, why just the left side of my tongue, and not my throat. I am going to stop the Motrin and see if it improves. Hope to update soon.

Paul
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