Kris4444 Posted February 16, 2013 Report Share Posted February 16, 2013 I saw my GP today and showed him some pictures of my face that I took yesterday after walking for 25 minutes. He was amazed at how swollen my face was, especially my nose and eyelids. He had asked me if I have ever taken an antihistimine for the flushing.I haven't for the flushing but I have for the cold urticaria. My problem is that the antihistimines cause my constipation to get worse so I can't take them daily, only on the days I know I'm going to be riding my horse in the cold.Does anyone else have swelling of their face when it flushes? This only seems to happen with exercise. The other flushing episodes from food or alcohol or chemical smells are flatter, not swollen looking. I wish I could post pictures on here for you to see what I mean. My profile picture has more of a flat flush because I had a glass of wine. Quote Link to comment Share on other sites More sharing options...
DoozlyGirl Posted February 16, 2013 Report Share Posted February 16, 2013 Kris,Cold urticaria, facial flushing and swelling are related to mast cells releasing histamine and other mast cell mediators. Excercise is a common trigger to release mast cells, and the two symtoms flushing and facial swelling are indicative of anaphylaxis. There is a condition called excercise induced anaphlaxis, you may want to read up on. I also wonder if you have a set of epi pens, as the swelling could very likely progress to trouble breathing. Alcohol and sulfites in wine are also common mast cell degranulators. Regarding the constipation, what antihistamines have you tried? Sounds like you may want to consider if those antihistamines have any degranualting or allergen based ingredients in them. Take care,Lyn Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted February 16, 2013 Author Report Share Posted February 16, 2013 Lyn, Strange that my doctors don't think it's likely that mast cells are involved. I am pushng it though and making sure I get tested. Thanks for the info! I do have an epi pen. Quote Link to comment Share on other sites More sharing options...
Kellysavedbygrace Posted February 16, 2013 Report Share Posted February 16, 2013 I agree with Lyn. Sounds suspicious of mast cell to me. Many docs are not well educated on Mast Cell disease. Here is a link to a great article about this. You can take to your doctors and if they have questions a good doc for the to contact (or you to contact is Dr. Afrin at MUSC- one of the authors.http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069946/Glad you have an epipen. Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted February 16, 2013 Author Report Share Posted February 16, 2013 Kelly, great article. Do you have contact info for that doctor? Quote Link to comment Share on other sites More sharing options...
Kellysavedbygrace Posted February 16, 2013 Report Share Posted February 16, 2013 Call MUSC (843)876-2700. Ask to speak w Susan Dunbar, Dr. Afrin's assistant. I think this number is the main appt line but they can get you connected. He will want you or your doc to fax medical records of your case before he takes an appt. This could take a while but well worth the wait. Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted February 16, 2013 Author Report Share Posted February 16, 2013 Thank you! Where is he loctaed? Quote Link to comment Share on other sites More sharing options...
Katybug Posted February 17, 2013 Report Share Posted February 17, 2013 I agree with the rest of the ladies...it sounds like a mast cell reaction. I have exercise induced reactions and my face gets really red and my cheeks look like chipmunk cheeks all of a sudden. If I just pedal slowly on my recumbent bike I am fine but if I pedal vigorously or if I ride my horse at any rate that increases my heart rate, it happens. I think Afrin is in South Carolina. There are a few mast cell specialists in Boston at Tufts (I think that might be closer to you??). I can't think of their names right this minute but I will search to see if I can find them too.Haven't been very talkitive lately cause my left neck and shoulder locked and typing is hard. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted February 17, 2013 Report Share Posted February 17, 2013 It could be something I ran into a year ago when wondering about celiac. It is called Wheat-Dependent, Exercise-Induced Anaphylaxis, or WDEIA. I thought it was fitting for me, as I had high gliadin antibodies, but negative biopsy for celiac. My hands swell like crazy when I walk. I like this part of the paper:"A case of WDEIA, in which pretreatment with sodium bicarbonate inhibits the reappearance of anaphylactic symptoms as well as elevation in plasma histamine levels following wheat and exercise provocation, was reported, suggesting a decrease in blood pH associated with exercise may play some role in mast cell activation."I have looked at Mast Cell Disorder as just another label(that is my opinion), and it is not actually figuring out the WHY of the reaction. I tend to think things like WDEIA make sense, and there could be other weird reactions to something we've eaten and have a latent allergy to in a strange way.http://ai.jsaweb.jp/fulltext/058040493/058040493_index.htmlThe only other thing I could think of when the swelling is restricted to your face is that maybe the drainage from your head is not good, as in blocked veins or something, causing swelling or "engorgement". Just some thoughts. Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted February 17, 2013 Author Report Share Posted February 17, 2013 Katie I'm sorry you still aren't feeling well. I need to PM you about what ended up happening with my daughter and her trainer You won't believe it! I am hoping that my rheumy will find a doctor who can answer some of these questions. He is currently looking for a geneticist to test for EDS. The other rheumy at Johns Hopkins is looking into a doctor for mast cell although he feels that will not be the case when it comes to me. I wish I could post the pictures so you can see what happens.Sue I have heard that things you eat can cause major problems while exercising. I don't know if that is the case with me or not. Once again, who do you ask? What kind of doctor would be the one who would look into this? An allergist? A hemotologist?I think it's strange that my doctors are at a complete loss as to who they can send me to. I guess this stuff is pretty rare. I just want a diagnosis. I don't know why it's so important to me but I want to be able to have a name to call this invisible illness that is robbing me of my life!I've been cleaning my daughter's room for 2 days, completely purging it. My everything hurts and I'm exhausted. I haven't gotten on the treadmill for the last two days and I feel defeated. I plan to do that first thing tomorrow so I have no excuses. Then I'll finish up her room before she gets home from her dad's house. Ugh. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted February 17, 2013 Report Share Posted February 17, 2013 Kris, great question. I haven't found the answer yet as to what doctor to see for various things. What I've learned is that you can see 5 different doctors in the same specialty, and finally one will delve deeper into the problem. I've been to MANY that do not.My first thought is an allergist, but may have to look around for one that likes research. I know, easier said than done. Maybe an allergist at a big, well-known center? I hope you find answers soon! Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted February 17, 2013 Author Report Share Posted February 17, 2013 I got an email from the doctor I saw at Johns Hopkins. He said he doesn't believe I have mast cell or EDS rather that I have a hypersensitive thermoregulatory system in the skin that is provoked by hot or cold. He says he doesn't think it's systemic but a local defect in the ascular responses to usual signals....he said our focus shouldn't be on finding a name it should be on managing it. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted February 17, 2013 Report Share Posted February 17, 2013 I'd like to know what he does for you. As far as thermoregultory issues, I cannot adapt to any temps outside of 70F-77F. Heat will undoe me quickly. Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted February 17, 2013 Author Report Share Posted February 17, 2013 Sue I started a separate thread on this. So far he hasn't recommended anything to do for me other than to follow what Mayo is suggesting with taking clonidine. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.