Swollen Tongue no one knows why

Posted by iandalrymple @iandalrymple, Feb 20, 2017

It started last August with my lips and cheek swelling lasted about 24 hours, a couple of weeks later it was my tongue. I’ve ended up in the emergency room because of the swelling but seven months later the Doctors have told me they don’t know. I have had all the blood work done and all looks good but every 20 to 30 days my tongue swells so much I can’t talk or even drink water. When this does happen all I take is 60mg of prednisone (don’t know if it actually works) my main concern is that I might choke especially when it happens in the middle of the night. Any ideas anyone?

@iandalrymple

Hi, thank you for the information. I’ve been to the allergy/Immunology department and was told I am not allergic to any foods, also I don’t get any rash, itching. The last five episodes it starts with a small lump on the side of my tongue and eventually grows staying mostly on one side until I can’t speak. I have taken ACE inhibitors (Losartan) for a number of years, but I did stop for two months taking them but the swelling still happened. I kept a check on what I was eating, drinking etc and nothing, as with last time it was two o’clock in the morning when it started. The allergist I last spoke to said, It is likely I will continue to have problems until new technology comes along.

Best regards,
Ian

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My dr finally gave me allergy meds. I take Loratidine, Ranitidine and a nasal spray Fluticasone every day and my swelling has gone from every to once or twice a month. Now if one starts I tske liquid allergy meds to help it. Hope this helps.

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@kanaazpereira

Hi @nikijerry,

So good to hear back from you, and it’s so encouraging to know that you have found some relief. Thank you for returning with your insights for @iandalrymple.

As @dawn_giacabazi suggested, have any of your doctors ruled out autoimmune disorders as an underlying cause?

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No they haven’t. They were pretty sure it was allergies and didn’t go any farther.

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@iandalrymple

Hi, thank you for the information. I’ve been to the allergy/Immunology department and was told I am not allergic to any foods, also I don’t get any rash, itching. The last five episodes it starts with a small lump on the side of my tongue and eventually grows staying mostly on one side until I can’t speak. I have taken ACE inhibitors (Losartan) for a number of years, but I did stop for two months taking them but the swelling still happened. I kept a check on what I was eating, drinking etc and nothing, as with last time it was two o’clock in the morning when it started. The allergist I last spoke to said, It is likely I will continue to have problems until new technology comes along.

Best regards,
Ian

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I am on reflux meds and it was mentioned but didn’t go any farther.

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@kanaazpereira

Hello @iandalrymple,

Welcome to Connect. This must be quite alarming and worrisome for you, and I’m so glad you found the Connect community.
I’d encourage you to read this article from Mayo Clinic about intermittent swelling inside the mouth: http://mayocl.in/1X2stFk

@dixie2013, @nikijerry, @tokorozawa60, @walden0228, @jerryd, have posted about similar conditions and I hope they will return with more information for you.

@iandalrymple, could you tell us a bit more about your symptoms? Have you noticed anything that may be triggering the swelling? What does your doctor recommend?

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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.

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@kanaazpereira

Hello @iandalrymple,

Welcome to Connect. This must be quite alarming and worrisome for you, and I’m so glad you found the Connect community.
I’d encourage you to read this article from Mayo Clinic about intermittent swelling inside the mouth: http://mayocl.in/1X2stFk

@dixie2013, @nikijerry, @tokorozawa60, @walden0228, @jerryd, have posted about similar conditions and I hope they will return with more information for you.

@iandalrymple, could you tell us a bit more about your symptoms? Have you noticed anything that may be triggering the swelling? What does your doctor recommend?

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@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!!

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Hi ! I am new here jus turned 30 I have been experiencing swelling under the right side of my toungue for the last 3 yrs ): it scares me so much it happenes at night, i am actually sitting here because its swollen i take Aller-tec when i feel it happening. 3rd time this week i dont know what to do anymore…

Liked by JerryD

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@sbouchard77

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.

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are you still in the same boat? I am new here and have been having toungue swelling for the past 3 yrs ):

Liked by JerryD

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@beautyburrito28

are you still in the same boat? I am new here and have been having toungue swelling for the past 3 yrs ):

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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.

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I have been struggling with this for about a year now.
I noticed it one day and it has been intermittent since.
My tongue is slightly wavy on the outsides, sometimes worse than others.

This morning I woke up and it was not there, and as the day went by I noticed it starting.
I occasionally have some tongue itching, but it is squally never around eating or drinking anything.
I do have anxiety and did struggle with some TMJ for awhile. I wondered if my teeth had shifted from the TMJ for so long. But when I wake up it is not an issue.

It really doesn’t bother me I can breathe, eat, and drink just fine. What bothers me is that it could become worse and affect those things eventually. Most things I have read it doesn’t grow worse than it already had been though, so that provides me some relief.

I have GERD and take 40 mg of Pantoprazole a day. I periodically take Zantac and TUMS for breakthrough problems.

I am an asthmatic and will resume taking montelukast tonight. I had stopped wondering if that was my issue with increased anxiety, but I don’t think it was.
I do have some instances of burning tongue and am wondering if I have oral thrush as I have thick white coating on the back of my tongue, sometimes with a yellow tint.
I used nystatin without relief, and it caused diarrhea. I will start the Clotrimazole lozenge tomorrow.

I do not have IDA, and my electrocutes are all normal, my B12 is “normal” but boardline low along with my vitamin d.

Wondering if anyone has some recommendations.

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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!

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@jerryd

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!

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I saw your original post. Do you know what you were ultimately diagnosed with?

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@johannahansen

I saw your original post. Do you know what you were ultimately diagnosed with?

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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.

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@jerryd

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.

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I do have allergies, I only tested positive to dust and dog (very mild as there was only a reaction with intradermal placement). She did state it could be allergies as I live with a dog and it is ever so slight. It has been over a year and has never gotten worse than this. It does not affect my breathing, swallowing, speaking, or eating. Which partially makes me think not allergies either as I didn’t get the dog until January of this year.
I think it might be just my teeth shifted due to prolonged Clenching and grinding at night (about a year). My dentist doesn’t seem concerned and he says it looks like TMJ. I have also seen countless doctors who have said it isn’t concerning and would have escalated if it were to by now.
I do notice that if I clench down harder than usual that is when they are most prominent.
Also steroids don’t make it better, I’ve been on a few doses of steroids this summer for my asthma acting up with sinus infections and it doesn’t change it.

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@johannahansen

I do have allergies, I only tested positive to dust and dog (very mild as there was only a reaction with intradermal placement). She did state it could be allergies as I live with a dog and it is ever so slight. It has been over a year and has never gotten worse than this. It does not affect my breathing, swallowing, speaking, or eating. Which partially makes me think not allergies either as I didn’t get the dog until January of this year.
I think it might be just my teeth shifted due to prolonged Clenching and grinding at night (about a year). My dentist doesn’t seem concerned and he says it looks like TMJ. I have also seen countless doctors who have said it isn’t concerning and would have escalated if it were to by now.
I do notice that if I clench down harder than usual that is when they are most prominent.
Also steroids don’t make it better, I’ve been on a few doses of steroids this summer for my asthma acting up with sinus infections and it doesn’t change it.

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Hi, an update on my situation… my doc sent me to a nutritionist to test for food sensitivities. So I’ve cut out gluten and dairy. I noticed a big difference cutting out out gluten… the face swelling/neck swelling has gone away. My tongue is about once a month but seems to be somewhat better after cutting out some of the major food allergy. I am waiting for blood results on food sensitivities… so I’m curious what that comes back as. I’m still on Zyrtec and Prilosec. My doc mentioned singular but haven’t dared to start it. My tongue gets ridged like yours @johannahansen and my doc said that was swollen but normal ….which I know isn’t true cause my tongue isn’t always like that! I’ve seen multiple specialists and they have no answers for me… lots of blood work and a CT scan. Nothing. I try to stay calm now when I get the tongue swelling… I try to relax my jaw and take deep breaths and not focus on it. It seems to help some. I’m
Sorry you’re going through this … it is really frustrating and scary.

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@sbouchard77

Hi, an update on my situation… my doc sent me to a nutritionist to test for food sensitivities. So I’ve cut out gluten and dairy. I noticed a big difference cutting out out gluten… the face swelling/neck swelling has gone away. My tongue is about once a month but seems to be somewhat better after cutting out some of the major food allergy. I am waiting for blood results on food sensitivities… so I’m curious what that comes back as. I’m still on Zyrtec and Prilosec. My doc mentioned singular but haven’t dared to start it. My tongue gets ridged like yours @johannahansen and my doc said that was swollen but normal ….which I know isn’t true cause my tongue isn’t always like that! I’ve seen multiple specialists and they have no answers for me… lots of blood work and a CT scan. Nothing. I try to stay calm now when I get the tongue swelling… I try to relax my jaw and take deep breaths and not focus on it. It seems to help some. I’m
Sorry you’re going through this … it is really frustrating and scary.

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We are in the exact same boat! Have you been tested for vitamin deficiencies or thyroid problems?
I reviewed my past thyroid labs and they are all over the place, I have a lot of the symptoms of hypothyroidism, I will be seeing my doc again to further test them rather than just the TSH.
What also makes me think it is not an allergy is that when I take Benadryl there is no relief.

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