Strange Afflictions – Crazy Clown Lips Disease (aka Cheilitis + Angioedema)

IMG_2077Last December, I boarded a plane to Florida to visit family for the holidays. By the time my cross-country flight landed, I had tingly red lips. Itchy. Swollen. This had never happened to me before, yet my mom had had a similar issue, one I dubbed “crazy clown lips disease.” For a more scientific explanation, look up cheilitis and angioedema (beware that scary images of lip swelling abound).

For Mom it started out of the blue one day (just like me); she thought it was linked to her new high blood pressure medication. Bouncing from doctor to doctor, no one could figure out the problem. She was finally sent to an allergist who told her, “You’re not allergic to anything, you’re dehydrated.” She stepped up the water intake and the lip issue eventually resolved.

IMG_5458Armed with that familial knowledge, I believed I too was dehydrated. I’m sure I was. It was winter – and certainly long-distance plane rides can dry you out. When I returned to San Francisco I set out a glass pitcher filled with 64 ounces of water and aimed to drink it everyday. Most days I drank even more (up to 12 eight-ounce glasses), and my body seemed to want it.

I felt less sluggish, my skin looked better, and yet….the lips! Here’s the synopsis of my never-ending cycle: lips blow up to twice their normal size, burning and bright red, then after a couple of days the swelling recedes and lips shed like snake skin, leaving a set of baby-skin-tender lips to start the cycle again.

Here’s how bad it got: I couldn’t bear to have food touch my lips (it would get embedded like quicksand); the tine of a fork could start a geyser of blood from a paper-thin tear; lipstick seemed to permanently tattoo my lips; I had to drink wine from a straw (oh the horror).

Bee Stung = Ouch!

Bee Stung = Ouch!

My extreme discomfort pushed me to share my dilemma with every person I met. How could they not notice this hideous disfigurement? In truth, most of them couldn’t tell a thing. My running joke: “People pay good money for this.” Beestung lips may be desirable for some, but in my case I really felt the sting!

My condition seemed directly linked to sun/wind exposure. Here in SF, I am constantly exposed to high winds. And I’m constantly outside (walk to work, walk to store, walk to restaurant). My lips hurt wherever I go. Aquaphor is the only thing that protects them from the elements, yet I have to keep reapplying (and I don’t like the idea of eating petroleum jelly on a daily basis). Too much heat or wind-whipping, and they will swell anyway, especially if I drink alcohol after spending time in the sun.

Five months in, I finally caved and went to the dermatologist. I was going on a Bahamas cruise and didn’t want to blow-up on the boat. The doc gave me two applications (one antibiotic, the other steroid). I applied them both for seven days, and my lips felt great. As soon as the treatment stopped, however, the problem came right back. I could tell the steroid ointment helped – I really wanted to maintain that “normal” feeling – but the doctor warned that steroids cause thinning of skin and cannot be used indefinitely.

My mom’s condition lasted 4-5 months. In her case, the redness/itchiness extended into her cheeks (Joker lips). My irritation never got too far outside the vermilion border (lip edge). But I did have that crazy recurring blow-up swelling, which didn’t happen to her.

IMG_6526Then I had an epiphany: one day I applied an “agave lip mask” moisturizer before heading off to teach a class. I did not go outside (drove from garage to garage), and by the end of class my mouth was aflame. This was no weather-induced flare up! I googled the product and sure enough, other women were having similar allergy issues. In fact, all the lipstick/lip gloss I was using from that same brand was causing a reaction.

You must think I’m pretty dumb. How could I not know I was allergic to my lipstick? I guess because I used it for over a year with no problems. In fact, I loved this brand so much that I got rid of most of my other lip products. Right before I started having the lip issue, I bought another shade of my favorite gloss. Then I wore it on that fated plane ride to Florida…..

Bite Beauty, I will miss you

Bite Beauty, I will miss you

Most people love this new brand: Bite Beauty. Organic ingredients. Food grade. I thought I was doing my lips a favor. Turns out “all natural” doesn’t necessarily mean allergy-free. It could be a reaction to lanolin (also found in some Burt’s Bees products). It could be the dyes – Bite uses food dyes since they are “food grade” products. I don’t know the answer yet. I do know that other lipstick/gloss brands are not causing the blow-ups. If I’d paid more attention earlier, I could’ve saved myself a lot of lip ache.

So it’s been a full seven months, including five weeks since the last Bite blow-up reaction. How are my lips now? Still extremely dry, still very sensitive to the elements. I walk around like a scarfed bandit, dreaming up clever ways to cover my mouth – wax lips, football mouth guard. I’m waiting for that day when my lips feel normal again (Mom says it’s coming). Until then, these are my tools:

wax lips1. Drink plenty of water
2. Organic coconut oil before entering shower
3. Organic Shea butter – thick and moisturizing
4. Ultra Repair Lip Therapy by First Aid Beauty
5. Aquaphor for the best protection from wind/sun
6. Avoid drying lipsticks, pay attention to ingredients

21 comments for “Strange Afflictions – Crazy Clown Lips Disease (aka Cheilitis + Angioedema)

  1. Fairy
    May 1, 2016 at 6:15 pm

    Any updates? I’m a miserable, puff-lipped monster. It’s been a few sessions of several months each and I’m starting to go a little nuts. Thanks for any help.

    • Alice and the Rabbit Hole
      May 2, 2016 at 4:19 pm

      Thanks for writing! Though I have not had a recurrence, my mother has seen her itchy/red/tingly lip problem come back for the third time. She keeps the Aquaphor on consistently (especially when outdoors) and monitors her water intake – both seem to help. As for me, my lips are not miserable like before but are still overly dry and chapped. I find most lipsticks are too drying. I don’t like the feel of Aquaphor, but I have found a few lip products that feel pretty good (including some tinted lip glosses). If you’d like to know more about them, please leave another comment and I will follow up with a blog post. Also curious to know what kind of climate you live in – my lips did better last week when I was on vacation (away from these windy conditions).

      • Brie Harper
        March 9, 2017 at 12:27 am

        It might be worth your while to be tested for hereditary angioedema. I had similar symptoms and got a boat load of blood work done and realized that it is a rare genetic disorder.

        • Alice and the Rabbit Hole
          April 14, 2017 at 3:31 pm

          Thank you, Brie. Is there any treatment for it?

  2. Rita
    December 25, 2016 at 11:14 am

    Hi!

    I’m having the same issue it’s been like 3 months, (since October). I live in Canada, so you know how cold it can be here. I thought it might be due to the weather change (dryness due to heating), and also I knew I didn’t drink enough water and so I started to do so. I threw away any lip products that I’ve used after it started to occur just in case it might be the reason. It started to calm down after drinking lots of water, then I’ve heard of Jack Black lip balm found in Sephora that I started to use. It did help, but I felt like my lips never went back to how it was before. It always had that weird “dryness” even though it didn’t look like it. And yesterday, that intense itchiness came back. I know I should touch my lips but I can’t help it cause its so itchy! I’m thinking of buying a humidifier, I’m thinking it could be because it’s really dry due to heating. Any new updates on your end? It’s really annoying!

    • Alice and the Rabbit Hole
      January 3, 2017 at 5:31 pm

      I agree, it’s really annoying! My lips remain too dry and look “puckered.” I don’t have itchiness anymore, but I often have a rash/bumps outside the border of my lower lip. I never go outside without something on them – I really like Lip Bloom by Farmacy (at Sephora). And I’ve started putting oil on them at night (and sometimes day). I use a “protective day oil” by Marie Veronique (which has been really helpful for my rosacea) – it is a blend of jojoba and other oils. Good luck and stay in touch!

  3. Jen
    July 2, 2017 at 11:20 pm

    Wow this exact same thing just happened to me and I just realized tonight it is my agave mask! I’ve been using it for months but I’ve been using it a lot more recently. It always seems to help which is why I didn’t think it was the mask. I’ve been on prescription allergy pills which helps with the giant swelling but still blistering and chapped. Thanks for the article!!!

    • Alice and the Rabbit Hole
      July 5, 2017 at 2:42 pm

      You’re welcome, Jen! Glad you found my article helpful.

  4. Karen
    August 29, 2017 at 5:51 pm

    I have the same thing. It’s been about 18 months. I know for sure drinking red wine two nights in a row will bring it on. I can only treat my myself to balsamic vinegar once in a blue moon when my lips aren’t at all comprised. As you know, once comprised, it takes weeks to heal all the while I have to eliminate spicy foods, vinegars, wine, all my favorites. Sometimes it comes on with out warning but I’m starting to understand what foods are triggers. I stayed away from red wine and vinegar for months and was able to manage it. However as soon I thought I could introduce the red wine back in, all hell broke loose. Appreciate hearing others experiences. I too find aquaphor the only safe smoother.

    • Alice and the Rabbit Hole
      August 30, 2017 at 1:13 pm

      Thanks for writing, Karen. I haven’t had any more issues with wine (thank goodness). My current morning routine is applying Lip Aid (by Sans) followed by Berry gloss (by Inikia). Then when I’m out walking around I keep my Olio E Osso No. 2 balm handy. All of these are “clean” products (not a lot of chemicals) and feel pretty good on my lips. If I go out at night, I sometimes use lipstick (Laura Mercier brand is not too drying for me, but I do tend to get a little itchy).

  5. Patricia VanValer
    April 8, 2018 at 2:59 am

    thankful I found your article! it’s been almost 3 months and still struggling with this i have taken a steroid burst and acyclovir x2 ( had the start of a cold sore — probably triggered by the stress) over the past two months. now I am on keflex, as the Dr was “certain it was a bacterial infect such as staph (impetigo )e
    on day 3, today I came back suddenly. I had eaten some goldfish crackers in a pinch today and had red wine last night. 😞 discouraged.

    • Alice and the Rabbit Hole
      April 8, 2018 at 12:31 pm

      Another new product I am using really helps with the dryness: Hyaluroil Lip Treatment by Twelve Beauty.

  6. Marianne Lacey
    July 24, 2018 at 5:42 am

    Hello I’m relieved to find this article as it’s not just me I have been dealing with this since November of 2017 I have gone through antifungal,antibiotics. steroidal treatment the dermatologist did a full allergy workup everything is the negative and I have been extremely frustrated I know for sure it’s started I was riding my motorcycle I could feel my lips were dry and I stupidly did not stop to put on more lip protection. I was home within an hour and 10 minutes but it was too late I’m not sure if I got sunburned or windburn I have always been extremely sensitive so I use only fragrant free products with very few chemicals but nothing was relieving the discomfort I tried coconut oil and I felt like it’s stayed on top nothing moisturizing to my lips. It is been so many months and so distressing it does take a serious emotional impact on you I am sometimes so uncomfortable I don’t want to leave the house my friends however think they look beautiful because they are resembling what other spend so much money having injections to look like but the insane itching makes it almost in bearable I was given one medication by the dermatologist called Oracea and that takes it to the place that it’s bearable but not healing it after a lot of trial and error I bought a children’s liquid bottle of Allegra and when the itching is at its worst I can take a small dose of 30 mg and it makes me comfortable I am focused on the healing process when I saw your post I immediately bought the organic shea butter and that is working excellently for me I did buy the lip repair and I found that to aggravate the itching so I think there are too many chemicals in it for me I also previously had used the Aquaphor and it does also increase the itching so I am using original Neosporin first aid ointment I put that on over the shea butter for Extra Protection especially at night and I wake up still totally covered and protected which is a great Plus I feel the shea butter is the first product that is actually being absorbed by my lips and resolving the dry skin around the Vermilion border I’m so glad that I found this post your information has helped me tremendously I have always used hyaluronic acid I buy the Watts Beauty brand off Amazon because it’s 100% pure and there is no alcohol which is too drying for my skin. I’d also find the hydration is a big K the more water I drink the better day I have with the lips I think my biggest crazy issue is that some days I get up and there’s no redness and no itching for about six or eight hours and then it’s back never makes quite sense to me LOL but I’m glad to hear I’m not crazy I was starting to think it was in my head and then I was doing something to cause it but could not identify it. The oracea is new I’m going to give myself 90 days and then see if I can wean off of it I will post updates on any changes I thank you all for being here and all the comments that you’ve shared

    • Alice and the Rabbit Hole
      July 26, 2018 at 3:40 pm

      Thanks Marianne, please do post updates. I’m glad the shea butter is helping. I agree, though, it never seems to resolve completely. I just tried a ten-day skin experiment with castor oil and had high hopes for my lips, but it didn’t seem to do much for me (like the coconut oil you mentioned, it doesn’t seem to absorb that well for lips). So far, the hyaluronic acid is helping me the most. I apply every night and day after brushing my teeth. But then I can’t really apply lipstick or gloss over it (doesn’t stay). I like to have a little color on my lips, so it’s frustrating. So tired of the dryness. Here’s the castor oil review, if you’re interested: http://aliceandtherabbithole.com/2018/07/castor-oil-challenge-skin-and-hair-review/

  7. December 3, 2018 at 7:09 am

    I also have extreme dryness and little raised red patches that spring up on my lips. I don’t have major swelling, and it isn’t itchy. I did find out that Sodium Laurel Sulfate (SLS) can cause this. It is in everything and goes under a lot of different names. Switching to an SLS-free toothpaste has helped a lot. I tried several of these that lied and still had SLS in them under a different name, but Verve seems to work okay. You can find it on the Internet. If I use regular toothpaste for just one day I get a breakout that lasts a week.
    I still have to use Vaseline several times a day, and I still have breakouts, which, I’m beginning to think, may be related to stress. I just wish I could find something to get rid of the problem totally.

    • Alice and the Rabbit Hole
      December 13, 2018 at 12:22 pm

      Interesting, Trish. I have similar reactions to SLS. Thanks for pointing that out.

  8. Danielle
    January 14, 2019 at 12:05 pm

    I know that this is an older post, but after experiencing a recent similar reaction, I just wanted to share my own experience, in the hopes of helping others who are at their wits end.
    I’ve developed my fair share of topical allergies in my early 30s, and after ongoing in-office testing, I found out that my main culprits are:
    lanolin
    Bisabolol
    specific SPFs (Avobenzone, Homosalate, Octocrylene, Oxybenzone are common sensitive skin irritants)
    any/all cinnamon derivatives (cinnamal & cinnamon bark are found in most toothpastes, and many lip balms, although they are listed in the ingredients only as ‘natural flavor’!)
    mineral oil
    sulfates
    silicones (dimethicone is commonly found in lip treatments & face lotions).

    Being that it sounds as though you still struggle with lip flares, it may be time to look at your beloved aquaphor as the ongoing catalyst, or perhaps, even your toothpaste. I know that it, too, took me countless trial & error eliminations to pinpoint what products were affecting me the most.

    Good luck!

    • Alice and the Rabbit Hole
      April 4, 2019 at 6:42 pm

      Interesting about the cinnamon – haven’t heard that one! I gave up on the Aquafor (didn’t seem like a good idea to use it all the time, though my mom still uses it daily). My cousin recently became a RF consultant, so for the last three months I’ve been using their Redefine Lip Renewing Serum. It has helped with the dryness (more than anything else I have tried). I can use each capsule 3-4 times and I only put it on at night. Here is the link https://phoenixbeauty.myrandf.com/

  9. Kelli Martin
    November 2, 2019 at 3:40 pm

    Hello to all my fellow sufferers~!

    I have been struggling with my clown lips for over 4 years now. My condition is so defacing and painful that it has affected my career. As a nurse, it is very difficult to care for my patients when I look and feel like crap. I have seen dermatologist, ENT, my primary MD and doctors in walk in clinics.

    Initially, this would happen several utimes in a year. Now it happening nearly one right after the other. I wish I could share photos with you here. Mine are so much more profound than any I have seen in my extensive research. My daughter is also a nurse. She too has been searching with me for all of these many years. She is the one who happen who happened upon this article.

    My lastest outbreak was triggered by eating half a bag of microwave kettle popcorn. Wow, right. I have stopped using vasiline (MD SUGGESTED) except sparingly. I think it kept the initial burning too moist. Instead I use vitamin E oil, coconut oil, avacado oil, all sparingly – in an attepmt to decrease and soften the pealing stages, which last for 8 days or more. When the symptoms first present, I try to keep a cold compress on them as much as possible. They burn so bad, and I am hopeful that this treatment decreases heat and lowers the number of layers of skin that are effected and later sluff off, for so many days.

    Putting make- up on only works after the burning phase, for a day, then the pealing starts. This condition has changed my love so much. I avoid going out at all. The way I look is so off-putting, and it makes people uncomfortable.

    I would love to find a scientist willing to take on this growing issue. Thanks to all who have shared here. I’m sorry for your sorrows, but at lease we know that we are not alone. If there is ever a researcher who happens upon this please contact me. kmrc@hotmail.com.

    I would also be VERY interested in gathering specific information to begin logging case studies. My plan would be to have all of the data at hand, so that when I find “that researcher”, I’m ready! I could also work toward writing a paper for publication in a medical journal. These are tough, but I would be up for the challenge and am a excellent writer, in the format that is required- APA Format…

    As a nurse I understand some of you may prefer to remain anonymous. I completely understand this. If that is the case, I would assign you case number or letter. I have done a great deal of research. I think that the more information we can gather, the better chance we would have to drill this down. If you agree to participate, all information gathered will be available to you as the data if gathered. Initially it would just be raw data, on a spreadsheet. Your thoughts and questions are appreciated. We have to do something, start somewhere… Perpahs there is grant money available somewhere to help with this research…?

    I also have half a mind to go to a Mayo Clinic. It would be nice to have a bunch of data to take with me. We have to do something, right…

    Please consider joining me on this indevor. Send me an email to let me know if your interest and we can share contact information.

    Thanks,

    Kelli Martin, BSN, RN-BC
    kmrc@hotmail.com.

    • Alice and the Rabbit Hole
      November 2, 2019 at 5:26 pm

      Thanks so much, Kelli. I would love to see this issue get more attention. I have not had the burning/peeling in a long time, but come to think of it I have had a very similar problem with my armpits in the past year. All of a sudden, they get triggered (usually after I am in warm sun) and I get burning red patches that eventually peel. I never thought of it being similar to the lip thing until I read your post. I am going through hormonal changes (perimenopause, late 40s) so I keep attributing all these unexplained occurrences to that. No doctor (dermatologist or otherwise) has been able to offer a solution. I found a mix of carrot lotion and “Zap” oils (both from Saje store) eliminate the armpit rash quickly. As for my lips, they remain super sensitive – I am moving soon from US west coast to east and wonder how my lips will react to real winter.

      • Kelli Martin
        November 2, 2019 at 10:08 pm

        You are so welcome. All of this information is important. Anything that has happened, when, what has been tried. Areas were we live, our age, gender, etc. Has a male responded in this thread? I am going to print out what is available here already, ‘gotta’ start somewhere. Once I have this all graphed out, I’ll be back. It would be nice to be able to post photos and documents here.

        I’ll be back… :~)

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