1. < Ear, Nose & Throat (ENT)

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?

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iandalrymple | @iandalrymple | Feb 21, 2017

Hi,
autoimmune was mention but after all the tests came back good, it was never talked about again.

Ian

REPLY
iandalrymple | @iandalrymple | Feb 22, 2017
In reply to @kanaazpereira "Hello @iandalrymple, Welcome to Connect. This must be quite alarming and worrisome for you, and I'm..." + (show)
@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?

Jump to this post

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

REPLY
iandalrymple | @iandalrymple | Feb 22, 2017
In reply to @iandalrymple "Hi, thank you for the information. I've been to the allergy/Immunology department and was told I..." + (show)
@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

Jump to this post

Hi Niki,
Question, have you ever suffered from acid reflex (heartburn) and if you have how severe and do you still?

REPLY
JerryD | @jerryd | Feb 22, 2017
In reply to @kanaazpereira "Hello @iandalrymple, Welcome to Connect. This must be quite alarming and worrisome for you, and I'm..." + (show)
@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?

Jump to this post

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>

REPLY
Nikijerry | @nikijerry | Feb 22, 2017
In reply to @kanaazpereira "Hello @iandalrymple, Welcome to Connect. This must be quite alarming and worrisome for you, and I'm..." + (show)
@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?

Jump to this post

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

REPLY
Nikijerry | @nikijerry | Feb 22, 2017
In reply to @iandalrymple "Hi, thank you for the information. I've been to the allergy/Immunology department and was told I..." + (show)
@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

Jump to this post

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.

REPLY
Nikijerry | @nikijerry | Feb 22, 2017
In reply to @kanaazpereira "Hi @nikijerry, So good to hear back from you, and it's so encouraging to know that..." + (show)
@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?

Jump to this post

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

REPLY
Nikijerry | @nikijerry | Feb 22, 2017
In reply to @iandalrymple "Hi, thank you for the information. I've been to the allergy/Immunology department and was told I..." + (show)
@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

Jump to this post

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

REPLY
sbouchard77 | @sbouchard77 | Jul 22, 2018
In reply to @kanaazpereira "Hello @iandalrymple, Welcome to Connect. This must be quite alarming and worrisome for you, and I'm..." + (show)
@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?

Jump to this post

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.

REPLY
1 reply
JerryD | @jerryd | Jul 22, 2018
In reply to @kanaazpereira "Hello @iandalrymple, Welcome to Connect. This must be quite alarming and worrisome for you, and I'm..." + (show)
@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?

Jump to this post

@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!!

REPLY
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