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iandalrymple
@iandalrymple

Posts: 7
Joined: Feb 20, 2017

Swollen Tongue no one knows why

Posted by @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?

REPLY

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?

Hello @iandalrymple. I have actually seen this before in my husband. Can you tell us what medications you are on or if any?? Also, do you have any other symptoms when you get the swells? (Weakness, fatigue, pain, rash, ect) This sounds like a couple conditions that I am familiar with.

Angioedema is swelling under the skin often appearing around the eyes and lips. The toxin found in poison ivy, oak, and sumac causes an itchy, allergic rash with raised welts and blisters. Redness, swelling, pain, itching, bumps are common symptoms of insect bites.

My husband was seen at Mayo Clinic Rochester MN for his. We discovered that
angioedema may be a sign of an allergic reaction, especially to medicines, foods, or insect stings. However, when symptoms become chronic (greater than 6 weeks), the cause is more likely to not be caused by allergies. Chronic angioedema may be caused by an autoimmune disease, thyroid disease, parasitic infections, alcohol use, non-steroidal anti-inflammatory medicines (NSAIDs), ACE inhibitors (a common blood pressure medicine). My husband was taking a blood pressure medication that had after a year of taking it built and intolerance over time. Once they had him stop taking it, all better.

Ask your pharmacist if the symptoms have been reported with any of the medications you are taking.

I have a very good friend of mine who gets facial swells and has to get special treatments as it is due to an auto immune disorder.

Hope this helps
Dawn

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

@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 had the same problem for 4 years. No answers or solutions. I was swelling every day. Every part of my body. Then I saw a doctor that said she didn’t know but said she had 3 allergy meds she could give me. I said I would try anything.So she prescribed them for me. Now I still swell but I don’t have er visits and I can control it by taking liquid childrens allergy medicine when it first starts. The meds are Ranitidine, Loratadine, and Fluticasone nasal spray. You might ask your doctor about them. They really helped me.

@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

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

@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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Please see my very recent post. JerryD

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?

@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

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

Liked by JerryD

@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

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

@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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Hi Niki, I will look into the meds. I appreciate your help.
Thanks,
Ian

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

Ian

@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?

@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?

@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.

@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

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