Enlarged tongue (yes a weird one)

[lindsayschu2]

Someone posted something regarding their doctor saying they had an enlarged tongue--Kirsten I think it was you, and I tried to PM you and couldn't. Did your doctor say why you had this, and I think you said he gave you a shot for it--what was this, and did it fix it? Mine swells three times its size off and on and I've figured out that this is what is causing my sleep apnea--I can't make it stop doing it and antihistamines don't help even though I think food allergies may be playing a role. My sinuses swell at the same time but my swollen tongue is way more the problem. When it is small, I sleep all night, when it is large I don't, and need to get this figured out, so if you could let me know any details the doctor said I would appreciate it. You can also PM, thanks!

 

[kirsten]

Yes, Lindsay, it was me. It's called macroglossia. It's desperately uncomfortable, but mine was only about 50% bigger, so it wasn't a bit deal. If yours is three times bigger, there is a real problem and you need your doctor to assess whether you have a medication allergy. Remember that mine was because I was toxic, so it's not a normal side effect that you just accept and try to cope with. If you have swelling in your mouth, that swelling can get worse suddenly and stop you from breathing.

My GP have me a B12 co shot with something else--I don't know what. I was too out of it to pay much attention. It's apparently indicated, but it's not the most universally effective treatment--he just said 'sometimes it helps'. He also gave me that and some sort of antimicrobial pill. I thought it was odd but I Googled and that is actually what they generally give you (for MINOR swelling). That solved the problem for three days. Then the swelling came back. It went away when I stopped being toxic.

I sent you a friend request--that's why you couldn't PM me. Please see to this swelling urgently. It's crazy dangerous, and if you're not convinced I'll send you a photo that will freak you out enough to take it seriously.

 

[lindsayschu2]

I'm probably exaggerating on the size of increase--my tongue sits nicely flat and even within the height of my teeth when not swollen and i can see my uvula completely, and when it is swollen, it arcs high up and is scalloped on the edges and you can't see my uvula at all--i use my tongue muscles to hold it down to breathe all day, and have apnea all night so I don't ever get into a deep sleep. My arms go numb and wake up with a crashing headache. It was much better for about a week. I'm pretty sure it's related to food allergies but can't rule out the addition of Keppra because it has gotten much worse since I added it. Thanks so much.

 

[kirsten]

I had the teeth marks on the sides as well, and my tongue basically ended at the outside edge of my teeth (all two of them :-D) But I seemed to have more of a width problem than a thickness problem. Macroglossia, as far as I can see, is rare and probably part of some sort of drug hypersensitivity. If you have any other allergies you'll probably know that today's mild reaction is tomorrow's catastrophe. Aside from which, no person on earth should have to hold their damned tongue down to breathe. You might also have other areas involved--other parts of your mouth might be swollen, and you might have swollen glands in front of your ears? Point is, you don't know what else is going on along with that swelling. If you know medicine speak, this is what's behind the reaction: http://en.wikipedia.org/wiki/Amyloidosis
And macroglossia can screw your teeth up if you don't take care of it. It needs to be checked out.

I've been reading up, and it's just not a common issue, so there's not a lot of easy reading out there. But there does seem to be rather a lot of treatments that might help. After a couple of allergic reactions to my drugs, though, I would never do anything but reduce the dose or change to a new drug. Could be the tegretol, or that weird carbon dioxide thingie that you're taking, if my reading is on the mark.

 

[lindsayschu2]

I looked up B12 deficiency--this could definitely be part of it--I quit taking it about 2 weeks ago. But I also am figuring out what I thought was a really minor allergy to fish is much more serious than I thought and I had a serious reaction to tuna three days ago, including hives and more serious tongue swelling, some difficulty breathing, which only lasted about 30 minutes, but the overall swelling has lasted three days now. It's not just my tongue, I have edema in my face and legs, everywhere. I've been eating tuna for years and have been probably been nursing along a lower grade food allergy and inflammation for a long time. I ate at a restaurant two weeks ago and had the same reaction--I didnt eat fish but called the restaurant and learned they cooked the food in the same oil they cook shellfish, something I tested very allergic to. I'm going to go on a food elimination diet and see what that does--my sleep apnea could have always been food allergies and sensitivities, all along. Thanks so much.

 

[kirsten]

Your GP might be able to put an end to that reaction. I'm sure you could even ask a pharmacist to recommend an antihistamine. It sounds bad. I have a couple of allergies that all of a sudden turned on me like that, so I have to carry an Epipen everywhere. It's important. Could save your life one day.

 

[lindsayschu2]

I put a call into my neuro and may go into GP or urgent care today. I looked up pictures of 'swollen tongue' on google and my tongue is no smaller than any picture I saw, and it seems to only get bigger in my sleep. I'll look into it.

 

[kirsten]

I'm very happy to hear that. Better to be kind to yourself, and safe.

 

[lindsayschu2]

I went on a complete avoidance diet--I have avoided all fish, any foods in contact with fish, all pork, any any food high in histamine, and all the tissues in my throat and sinuses have reduced in size by like 2/3rds, and OMG I am SLEEPING!!! I have slept like a log 6 nights in a row, no sign of apnea, no headache, deep sleep like I havent had in 2 years. I'm not kidding my whole life outlook has completely changed. I've been going through life on what feels like 2 hours of sleep max, night after night, for 2 years, with what feels like an oxygen starved brain. My lungs get full breaths too. Thanks a lot--I think I've solve a gigantic life problem.

 

[kirsten]

:woot:

I actually didn't help you at all, though. Your thinking is what did the trick.

I'm so glad you're a lot better. It's amazing how much quality of life such a weird thing can take from you, isn't it? I think I've had three weeks being better and I still think about how grateful I am that I am rid of that problem.

Get yourself an epipen. Apparently you guys have a generic now. You could end up going to a restaurant and eating the wrong thing. There was a story in the news about a year back about a teen who went to a buffet without her epipen. She started having a reaction so her mother went to the pharmacy and they refused to sell her one without a script. She died before they could get to a hospital.

There are also specialists who can find out exactly what you're allergic to so that you only need to limit the stuff you know is a problem. Careful of quacks, though.

 

[lindsayschu2]

Yes I'm going to talk to my doctor about it for sure--my allergies have escalated for some reason. Apparently there is a link between hormones at this time of life and allergies getting worse so I will look into that. At least for now, removing allergens from food and dust in my home has made a huge quality of life jump and for that I'm so grateful. I did have allergy testing years ago (the skin testing)--I tested allergic to fin fish, shellfish and pork, but could eat all those things with minimal problems, so kept eating them. Shellfish got worse so I quit that, but I didnt realize the subtle inflammation problems I was having from eating the others until they got worse and worse. I'd say to anyone now with inflammation problems to look for possible hidden food allergies since it made such a huge difference for me.