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Fri, Sep 13 9:46am · ENT Issues: I don’t know what to do. in Ear, Nose & Throat (ENT)

Good morning, Lisa,
I continue to be thankful to have found the solution to my Angiodema. Having had the swollen tongue completely filling the mouth is concerning not to mention severely swollen lips and feeling the chest begin to swell as the Angiodema seemed to grow to an advanced stage.
The medications that were prescribed for me have kept the situation under control.
Lisa, you asked about side effects. I have experienced side effects. Thankfully, the immunologist I saw at Mayo Clinic in Rochester, MN foresaw that happening as, in her prescription for me, she stated that if I begin to have stomach problems (I did) make a change to this other medication.
I made the change to another medication she had prescribed and that got me through another 2-3 years which brings us to this year, 2019. Late it 2018 I began to experience more stomach pains and along with that frequent diarrhea. I have been seeing a gastroenterologist specialist. My visits and tests have concluded and show no problems.
During these later years I began to experiment with using less of the medications and less frequent and I have not had any flareups.
Presently (9/2019) I am taking 2 medications once a week with no episodes of Angiodema or stomach problems!!
I hope this person finds relief!

Wed, Sep 11 10:25am · ENT Issues: I don’t know what to do. in Ear, Nose & Throat (ENT)

Please see my posts re. swollen tongue, lips, mouth and into my chest cavity. My Mayo Immunologist was the answer.

Oct 30, 2018 · Swollen Tongue no one knows why in Ear, Nose & Throat (ENT)

eabody88 WOW and WOW!! Thank you so much for posting such an amazing, informative and very complete synopsis for all of us. I will be reading the information you have referenced and will respond.
I thank you thank you for looking into these issues!

Oct 29, 2018 · Swollen Tongue no one knows why in Ear, Nose & Throat (ENT)

Allergies had been ruled out prior to my appointment at Mayo Clinic Rochester, Dr. Catherine Weiler. She is an Immunologist. It appeared to me that almost immediately after hearing my story she knew the problem. I was diagnosed with Angioedema which has been controlled since that visit with the medications that were prescribed.

Oct 28, 2018 · Swollen Tongue no one knows why in Ear, Nose & Throat (ENT)

I am sorry you are having problems. The only comment I feel I can respond to is the "itchy tongue". This is one of the symptoms I have experienced and each time I felt that I began to feel a swelling.
I suggest you consult a Dr. and get on the way to better health.
Wishing you the best!

Oct 24, 2018 · Swollen Tongue no one knows why in Ear, Nose & Throat (ENT)

First let me say truly how sorry I am that you are having this issue. You asked if I am "still in the same boat" and the answer is yes I am to a degree. In my previous post I spoke about 3 meds that were prescribed for me which stopped the swelling in it's tracks! That was in 2012. Because I tend to not be a good "taker of medicine" I was concerned because 2 of the medications were primarily for stomach issues of which were non existent in my case. I took a leap and decided to discontinue one of the stomach meds, Ranitidine, and hope for the best. One of the reasons I did this was because I began to experience stomach discomfort which was something I never dealt with previously.
Discontinuing the Ranitidine did not help my stomach return to my normal but at least I didn't experience any further angioedema. (tongue/mouth swelling). In addition to this change I reduced my med intake for this issue from an every day occurrence to once every 3 days and still having no swelling.
SO…..I am going out on a limb here when I confess to making my own diagnosis on a Mayo Website! Hopefully I won't be blackballed as a result! LOL
I wish you the best, I know how frightening it can be.

Jul 22, 2018 · Swollen Tongue no one knows why in Ear, Nose & Throat (ENT)

@sbouchard77, I'm sorry to here of your trouble. I experienced the same as you, becoming more and more frequent. Started around the mouth area, lips and cheek then gradually over time making it's way into my tongue. Usually would happen at night but not always. Several times waking up with my mouth completely full of my swollen tongue. I ended up being hospitalized for it, to no avail. I saw 4 different doctors including an internist and an allergist. None of them had answers for me but suggested I get in to Mayo Clinic since if anyone had experience with this issue it would probably be doctors at Mayo. By the way, the swelling soon had made it's way into my chest and I could feel it there when I would have an episode. Of course, I was very concerned about this, no one had an answer for me. I too was feeling helpless. I have also taken photos at times when I was very swollen since I began to think that I needed to be able to show what I was experiencing and how debilitating it was.
When I saw the Mayo Dr., Dr. Catherine Weiler in the allergy dept. although she was not an allergist but had some other specialty. She examined me and immediately prescribed 3 meds, zyrtec, montelukast and ranitidine. I began taking them right away and have not had the swelling anywhere in or on my body since!!
I wish you well!!

Feb 22, 2017 · Swollen Tongue no one knows why in Ear, Nose & Throat (ENT)

Hi, I have never suffered from acid reflux. I understand why you ask since at least one of the meds I take is specifically for that. Apparently it is also effective for other issues as well.