Hello from JerryD.

I have suffered with this for about 40 years. I initially thought this was just an allergy. I had recently moved my home from a small inner city community to a lake front next to a bunch of open lots and fields when I first began to notice this. It began as just an irritant.
Over the years it gradually worsened. I had seemed to have it under control using the common allergy med, Zertec. Eventually it had grown into a life threatening illness. I would wake up (it occurred during the nighttime usually) with my tongue swollen to the point of filling up my mouth. If my nose had been plugged during any of those times I would not have been able to breathe. Shortly following that it began to go into my throat and downward. I could feel it in my chest.

I ended up in the hospital for it where many tests were given including seeing an allergist. After seeing my two primary doctors and the allergist and after many tests, not one could give me any answers. The suggestion was for me to try Mayo Clinic in Rochester, I may have a chance of a diagnosis and help from them.
I saw a doctor in the allergy dept.. She was not an allergist but an immunologist who knew exactly what to prescribe for me because it helped IMMEDIATELY. I was prescribed 3 meds, Zyrtec, Famotidine and Montelukast, one of each to be taken each day. This was in 2012, today is February 21, 2017 and it is still under control.
Now, I am not one for taking medications much to my wife's dismay so I began to experiment a year or two ago to see if I could lessen the number of meds I am taking. Today I take the above mentioned meds one each every 3 days with no angiodema experience. I hope this can be of help to those who are still searching.

I do believe that I have had at least one side effect from the meds but this has not been proven, it's just my belief. I will not mention that in this communication since it is not a fact.

Cheers,

JerryD

Welcome back, @jerryd! Thank you so much for returning with all this helpful information.

Thanks so much Jerry, you have given me some hope I might be able to live with this. It just seems strange to me in this day and age they can't pin point the problem.

Best regards,
Ian

Hi Jerry,
One question have you ever suffered from acid reflex (heartburn) and if you have how severe?

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.<br>

I agree. It is very disappointing to be unable to get help or answers

Hi @jerrd ... I have been having slight tongue swelling since March...along with under the chin swelling. I had a cat scan and it showed my lymph nodes were slightly swollen.... no one can figure out why this is happening. I’ve seen several doctors and all with no help. All I have gotten for dx is acid reflux. I took a purse of prednisone and that helped but came back when I stopped. I’m on Zyrtec 2x a day right now and Prilosec. My doc mentioned singular as well. After reading your post I might try it. Been reluctant. The newest dx is food sensitivities... off to a new doc in a month for that. The tongue thing no one can explain. I’ve had a few doc tell me it’s anxiety or globular sensation.... so so frustrating when I know it’s not either of those.
I started taking pics of when my chin and face is swollen to show the doctors now. They just can’t explain it. I’ve had allergy testing but he only did environmental and it showed no allergies.
I have a lot of post nasal drip and congestion with all this.
I’m glad I found this feed.. I’ve been helpless for months now with these symptoms and no answers.

@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!!