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daughter keeps having swollen lips on too many occasions. A few times at work (office worker) and this time at home. So bad that she feels she can't go into work. Has taken Benadryl and it helped some but swelling has resumed.

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does she have any other symptoms before, during, or after this happens? like numbness,tingling or anything of the sort?I found some things related to your topic but since i have no details I will give you what I found.



A

Acromegaly ... enlarged lips

Angioedema ... swollen lips

E

Eczema ... Lip inflammation (Cheilitis)

G

Glucagonoma ... lip inflammation (cheilitis)

H

Herpes stomatitis ... lip swelling

Hives ... lip swelling

M

Melkersson-Rosenthal Syndrome ... lip swelling

Mucopolysaccharidosis II ... enlarged lips

Myxedema ... swollen lips



You may look some of these up ans ask your daughter some questions to help you better find your answer.sorry I couldn't help more!
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My wife gets swollen lips occasionally and can't go to work. No allergies have come back positive. She also has the swelling in her feet and hands occasionally and it kind of bounces around to different body parts.
Any help would be awesome.
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I have that too! No one knows what is going on... I posted this in another forum, but I'll repost it here, becuase I think it fits with what is being said here:

I have something somewhat the same... back when I was in middle school I would randomly have an area of my body swell up... at first it was just something small, the side of my tongue, a part of one of my lips... then it just went away.

Two years later it came back with a vengeance. About once a week during the fall season, a part of me became swollen so badly I couldn’t even move. Sometimes it was just one part of my body at a time… my right foot would become huge, red, and slightly itchy… or my lip would swell up and become hot to the touch. Sometimes it was really bad. I have a picture from one day when every part of my lip blew up to 3 times their size, and one of my hands was completely swollen from the tips of every finger down past my wrist. Sometimes my feet would swell so badly that I couldn’t even step on them, or my tongue would swell so much that I couldn’t even close my mouth all the way, although luckily it never impaired my breathing.

No doctor that I went to knew what was wrong—one even said that “well, if you haven’t figured out what caused it yet, how am I going to?” Can you believe that? So I stopped going to the doctor, got a prescription for an epi-pen, just in case, and just let it run it’s course. Soon it did stop, maybe within 3 or 4 months, it was so long ago I don’t remember.

For the next 9 years… NINE years I maybe got swollen at the most 3 times, and they were minor, minor cases, not lasting for more than an hour. Then, suddenly, about a month ago it started again. Now it’s not once a week, it’s once a day. Sometimes multiple times each day.

Sometimes I can feel it start in one part of my foot and move across it… I know it sounds weird, but I can. Or when my tongue swelled up last weekend (and the back part of my throat, too) I could tell by the tingles that have become too familiar what part was going to swell next and when it reached the peak.

I can’t stand it anymore… it’s impairing my job. So far all that has swelled up at work has been my feat, or –a new one- the front of my hip, but what if my tongue or lip swells up when I have to work? I can’t do my job like that. Even my feet are causing me to limp around the office…and try explaining why to your co-workers! Haha

The only consistency I can think of with this is that it’s seasonal… But what about this season and the fall of 1997 (I think) are the same, that has not been the same in all the years in between?

It’s a mystery to me… one I really, really wish someone could solve : (

If anyone else has something like this, please, please let me know… maybe if enough people compare notes we’ll think of something!
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Hi Echo1570,

Your symptoms are exactly what i have been experiencing over the past few years, and i mean just about exact, mine started about five years ago when through the night my lips swoll up (both lips) so much that they split (well the top one did), this went down after a couple of days and since then i have been having recurring swellings, going from the Hands, inner thigh, feet (common one) lips, behind ears, face/cheeks, forearms, and at the side of my body just at hip level, the swellings are usuall very itchy when they get going and i can feel a very 'down' sensation in the pit of my stomach usually that just drags me down, like you i went to the doctor and over my 10 or so visits i had Patch testing, blood tests, urine tests, etc..etc.. and they still do not know what it is, i was pretty much told the same that if i dont know what caused it then how would he know! i insisted that he supplied me with an epi pen which i now keep with me, by process of illimination i stopped drinking coffee for a while as i was a major coffee drinker (20-25 cups a day), i thought that since my consumption was excessive parhaps this was it, well, when i stopped, after about a month or so the swellings completely stopped and they stopped for a year or so and then out of the blue they started up again ! i am at my whits end with this one and just want to know what is going on, i have never been an alergy sufferer or ill and this is getting me down, i find that most swellings last between 2-4 days, as i write this my top lip has swollen, and like you say it moves around your body and you can almost tell (by sensations) where it is going to go next! this swelling i have now has gone from my forearm, to my hand, to my hips, to my lips, to my foot and now back to my top lip! i just dont know, any help or pointers from anyone would be apretiated.

Thanks
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Echo & Nikolas,
I have had in the last year, swelling crop up consistently, woke up with my lips blown up, my hand has swelled in the past and currently my right foot is swelled (most common is my feet), also my left ear seems to itch and get red a lot. seems to occur every several weeks. Red, itchy, swelling.
Nikolas, you said you gave up coffee, went away for a year, by any chance were you drinking any other caffeine during this period?
I believe coffee may have something to do with mine, even though I drink 1-2 cups about every other day. I am going out of my mind to figure this out. Been to the allergist a few years back to no avail, but now my arthritis specialist (they checked me for rhuematoid, gout and thyroid probs) who I have seen only once so far is giving me a special allergist-immunology doc. He actually believes me, well considering he saw me with my right hand blown up helps too. But when I told him about my lip he was in question- yikes hold on, I have to itch my foot-
arghhhhhh.
it is currently 1am and I have been researching for the last hour and this seems to be the only thing I found with the same symptoms.
Now I will mention I have multiple sclerosis but have been told that has nothing to do with it.
lets keep each other up to date. K
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I too am suffering from that exact same thing you guys described!

Been to several allergy spercialists, done multiple blood/patch/skin prick tests to no avail.

I have it slightly under control though, I noticed if I take anti-histamine tablets every night, I dont get any swellings at all and it had been like that for more than a year now until tonight. Out of the blue, my lip has just swollen up and I hate that feeling! I really hope it goes away when I wake up tomorrow morning as it usually does if I 'sleep it off'.
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Hi there

I thought i am the only one in this planet who has this rare condition, because doctors keep talking about it theoretically in their articles, but i actually never talked to anyone who suffer the same thing.

I was diagnosed with Melkersson Rosenthal syndrome 6 years ago, but apparently it starts in adolescence... at the time I was hit at school and damaged facial nerve and was paralysed on one side of it. after that it was ok, but then the second phase apparently starts around age 25 or so and apparently i was predisposed to that (so if i wouldnt be hit when i was 12 years old, i wouldnt have had this c**p!)... so at the age exactly 25 my lip started to be constantly swollen, recurrence after recurrence...I recognise similar symptoms from your postings. I usually have very strong migraine first and then tingling on my face and then the lip starts to get swollen. But.... migraine goes away which means that even though the lip is getting bigger, i stop having excrutiating headaches. I once was with that doctor from Korea who did accupunture and other far eastern stuff. She said that although we worry about swelling (because this is what we see), it is actually better because swelling is already the result of body's reaction to something more serious, i.e. the result of our body's fight against it. I also think that it always comes unexpectedly. But there are certain pattens i notice in my case that would definitely trigger it, like when I am under severe stress (and i mean real serious stress) or when i eat a lot salty stuff (although it may not lead to full blown swellingess but i would definitely look puffy).

Anyways, because after each swelling episode the lip never went back to its normal shape, it is so big now (it is not even the lip itself, but the area surrounding it). And it gets a lot of unwanted attention. Obviously psychogically it is quite a challenge.

How do you cope with it?

Another question, did you consider lip reduction surgery and if you have done or going to do it how did you find a doctor and what are the expectations...

Would very much appreciate if you let me know on _[removed]_

Thanks a lot.
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I also have been suffering with my lips (on my face) swelling. My allergist says it is caused by allergic reaction to preservatives in foods. I have been trying to study brands, types, nutrition and preservatives. It is all about what is in our foods. I have been able to control this about 60% of the time. But right now I am having an unusually bad case. My lips swelled up a few weeks ago and it seems to keep reocurring. I know its what I've eaten but even brands you can eat change the amount of preservatives etc. all the time. The best thing is to write down everything you eat and the brand and read all lables to see which ones make you swell more. I still have to learn alot more. And I know that its very hard to keep control but its a necessity. They put bad stuff in our foods. For instance try stouffers new frozen foods with no preservatives and see how different. One example is the Italian brand breads. One is loaded with preservatives and one has very few. But they look the same almost. Be very careful. I hope this helps.... I,m still studying and learning.
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my lips (on my face) swell off and on all the time. My allergist says its from preservatives in food. So I have been studying food labels, nutrition, preservatives etc. I have found I can control this 60% of the time, but it is very difficult. Every single food we eat, evry brand contains different amounts. In short I have found that if a label has alot of stuff listed it probably has too many preservatives in it. Prepared foods are very hard to eat. The only one that is getting better is stouffers frozen foods without preservatives. You will need to write down every brand that you can eat and what it was. But they may change it sooner or later because thats what the food industry does. It also apples to shampoos, hair care and face products. Its very hard to do. It runs my life. I never eat food offered because I cannot read the label, They change shampoos all the time, New imporved and then I have to start the process all over. One more example is Italian bread. Two labels look the same, but one has so many preservatives and the other hardly any.
The one type I accidently grabbed the other day because I wasn't paying attention and now my lips have been swellliing off an on again because any preservative in anything puts my body over the limit. So I am going to fast to cleanse my body to help get the level down. I hope this helps
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Hi Kwatch,

Just from your last question regarding the coffee, when i stopped drinking Coffee my swellings stopped, i stayed off it for a year with no swellings and then (dont ask why) i started drinking it again, and sure enough i swelled up again, i have stayed off it again for a few months and then just to be sure i had a coffee (yes one coffee) and sure enough i swelled up (the next day) , so i am quite sure that is what my 'intollerance' is , i do however drink tea and Coke which has caffine in it with no problems, one other symptom that i didnt mention in my last post was just before a swelling hours before i feel very uplifted and positive (i am usually positive anyway but do feel ultra positive) and when the swelling kicks in it is the COMPLETE opposite i feel very down and depressed (very much) and i know i feel un-naturally down at the time of swelling, it is not just a low feeling from having an ailment, this feeling is dark! i dont know if anyone else has this feeling? i hope this helps.
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Hi,

I have been reading what everybody has wriing here. I googled lip swelling and found this. So it started when I woke up one morning and Mmy top lip was fat, I wandered what happened, my friends said I looked like I had been punched in the night XD then it happened again maybe a couple of weeks later, then again, then again. I now know the tingly sensation I get then I know my lip is going to go super fat!I am 20 years old and dont understand why this is happening, also I got it 2nite, and still have it now but I also had kind of lumps on my tummy and my neck just wandered what these were?does any1 know?I get itchy palms and feet sometimes and a really sore pain in my back just by my right shoulder blade. I went to the doctor and he just said it was anxiety and laughed me out the door. can anybody help because I am panicking!xx
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I've been getting the same symptoms that everyone discusses here. And I had the allergy and blood tests done and nothing came up.

But I think I got it figured out!

It happens whenever my stress levels and daily responsibilities get too much! I've just finished my 2nd year of University and after I completed the 1st year I was getting these symptoms. The pressure of studies was new to me and I got OVERLOADED. But its not just Uni work that did it... it was being a single parent, financial pressures, etc etc.... the Uni work just topped it off and I got the puffy lip.

My doctor suggested to carry around antihistamine 'cause he said some people get it so bad that their lip swells so they can't breathe and have to call an ambulance!

Our bodies definitely do not appreciate a large amount of stress for a long period of time.

And when our bodies are stressed anything not natural such as preservatives, food colours, but even coffee can be difficult for it to handle.

What I do now is recognise my stress levels before it gets too bad and do some relaxing.... meditation... read a book... go for a walk... or take a day off!

Anyways, that's just been my experience. I'm now waaaay over stressed and getting the puffy lip thing again.... so I'll be doing some relaxing and de-stressing!

Good luck all!

**edited by moderator**
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Hi everyone,

I think I might have cracked the swollen lips thing. I get it whenever I go on my holidays or if it's warm at home (Ireland) and I and 90% certain that when I get an insect bite, it triggers allergic reactions afterwards. I am nearly certain this is why. I get the whole swollen foot thing too, A antihistamine usually sirts me out but I hang lavender around teh house and use citronelle candles, hope this helps.
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Any help with swollen tongue and lips. I've had it for 5 years and it moves all throughout my body. I've been to allerfgists,md's etc. With no help.

Any suggestions????

Going nuts !
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