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.
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
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:
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.
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).
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.
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.
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.
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.
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.
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.