I developed this "red ear syndrome" about 6 years ago, a month or so after returning from a mountain climbing trip to Mt.Rainier and Mt.Baker in August. It began as a hot, flushed, burning sensation on the left side of my face and forearm as I was driving home form work about 3-4pm. I thought it was just the sun shining through my car window. Next it would occur in the afternoon when I was at the gym and it was then that I noticed in the mirror how red my ear was. I am a nurse anesthetist so I immediately began to record my symptoms and when they occurred and I was also able to measure that the local skin temperature does increase when the flushing begins suggesting that this is some sort of neurovascular syndrome. I asked several surgeons about it and no one had a clue. I saw my Interal Med. MD who ran every test known to man. Then I saw a neurologist and a rhuematologist, both of which had no clue what this might be or any suggestions. The frequency of occurance and the intensity of my symptoms progressed over about 6 months to include burning along my left lateral thigh, calf and the sole of my foot. Eventually it spread to the right side but the flushing/ burning occurs only on one side at a time and only rarely on the right side. I can no longer wear socks or a hat because they are always burning to some degree and I feel as if I am overheating and might faint. The burning does not follow any nerve dermatone zones and does not appear to be linked to stress levels, alcohol intake, weather, but it does seem to occur more in the fall/winter for me and in the afternoon or night hours. But I live in SC so it might just be so hot that I don't actually notice the burning as much during the warmer months. After about a year my symptoms and flushing episodes sort of leveled off and have been stable ever since. The scary part is that I returned to Mt. Baker and Rainier the next fall with some friends and about a month after our return my climbing partner (Mark) and another friend (Pat) developed the same syndrome!!!!! We were all negative for Lyme's disease (which was every MD's 1st bet) Sojourns, Relapsing Polychondritis, fibromyalgia, carcinoid syndrome, an assortment of autoimmune disorders. You name it, we all got tested and were negative plus we are all pretty much healthy otherwise. Pat and I work at the same hopital but the mountain trips are the only common link that the 3 of us share. We all had mild flu like symptoms after we summited and then developed knee joint pain and then the flushing started. Now we all have very dry mucus membranes, just in the nose and have nose bleeds. Our MD's settled on either a chemical or biological toxic exposure (perhaps from melting snow for water) that produced some sort of neurological damage that also involves the vascular system and may involves the sympathetic nervous sytem. But if any of you out there have any thing similar to what we have then the Mountain trips can not be the causal link. Some one needs to start compiling a data base of symptoms and the onset and patterns of occurance. Pat (also a nurse with a PhD in Public Health) and I might be interested in developing a web site that would have persons with this syndrome complete a questionaire/assessment tool to be used to gather data and look for a common link. We are trying to pitch this idea to our Internal Med. Docs and maybe the local university public health department. It would be great to include a university that has a program in epideminology. If anybody out there has symptoms similar to ours or if you are interested in helping us try to launch this "data collection" project, please reply. Thanks
I've had this for so many years I thought I was used to it. Til today. It has ALWAYS been my right ear and today around 5 pm I went to the john and noticed it was my left ear! For what it's worth, I'm 53, female, on hormones, ADHD, AB+,and chubby. Sometimes my nose burns too, and gets red. My ear is not just red, it's PURPLE! I have been known to put ice on it, to no avail. It goes away in about an hour. I've never documented the time of day or my moods but maybe I will now.
Wendy, When I read about problem occuring after your trip to Mt Rainer & Mt Baker It caught my attention. We live at base of Mt. Rainer and I have joked here that it's our water affecting so many pepole here with cancer in our town.... But I have had the red buring ear mostly the left for some time. My feet and stomach have been affected with the same burning sensation but its been a couple of years and I thought it was the start of menopaause. But this only started after moving here to Washington State I've been here 13 years. Also very dry mucas menbrane and tonight had another nose bleed.... So here to Data Collection
I would be very interested in this. My 11 year old son has suffered from red hot ears for several years. He has had a bad episode these past few weeks. His ears get so hot that he cannot sleep. He puts ice packs on his ears in order to get some relief. He wakes up during the night when the ice packs wear off. I have been making several trips a night to the freezer. I have mentioned this to my pediatrician in the past and they just say they have never heard of this. We went to an ENT once and he acted like I was crazy. We need help.
My son of 13 years old is having the same problem. He too puts ice on his ears. There does not seem to be a pattern of activity that trigers it. However I notice a few people mentioned they were ADHD/ADD and my son may be as well. We are in the process of having him tested.
I have recently noticed my 6 yr old son's right ear gets very hot and very red and the other one is normal and I am just online now researching this and he has been diagnosed with ADD. I wonder if there is any connection. I have not mentioned this to our Ped. yet but will.
Kelly, I have a ten year old son with the same problem. He usually sleeps with wet/cold washcloths on his ears. Our ENT said he HAD heard of this condition. I don't remember what it was called, but he said it actually had to do with the cartilage or tendons in the ears becoming inflamed-not blood vessels like everyone assumes. The only relief is steroids, and since they can only be used temporarily, it's not really a solution. He also said it may never get worse, or it may be an indicator of some sort of tendon/cartilage disease he may get when he becomes an adult. Hope this clears up the mystery. My son also has ADHD, but I don't think it has anything to do with it. I have another child with ADHD and he does not have this inflamed ear burning problem. Linda
I have had this problem with my ears for years now. It actually started with my cheeks and would normally occur when I was stressed, angry, or embarrassed. Then it started in my ears and has been happening everyday for a couple of weeks now. I noticed the other day that my daughter, who is only 18 months old, had the red hot ear problem, but it was only her right ear. That's when it started to bother me. I've never worried about it before, I just figured maybe my blood pressure was up. But when I saw that my baby had the same thing, that's what made me want to start to research this problem. She has now come down with pneumonia and I am just getting over bronchitis, so I don't know if that has anything to do with it. I've never really mentioned it to a doctor because I figured they would think I was just crazy. Now that I see that this is something that happens to a lot of people, I am definitely going to mention it to our doctors. I know that I am O+, I don't know what my daughter's blood type is. As far as I know I don't have ADD or ADHD or ODD. I am 24 years old and overweight but am currently taking Phentermine to lose weight. I've never really kept track of the time of day or anything because I just assumed it was something normal thing for me. Like I said, I've had it for years, as long as I can remember. And for me it gets worse in the summer. Once I go outside my cheeks will get burning hot, and now my ears do too. But the worse part about it is that even after I go inside, I can't cool down, sometimes for hours. If I'm in the car I have to have the air conditioner on full blast and pointed directly at my face, otherwise, it burns really bad and feels like my face is tightening up. I've noticed that the sun really plays a big part in it because sometimes, even during the winter, only my left ear and cheek will get red and hot while I'm driving. But if I can get out of the sun, sometimes that helps. I do not want my daughter to go through what I have gone through with this problem so if anyone finds out anything, please let me know. Thank you.
Have you seen your md? It sounds like sun sensitivity may be a problem. I have a few friends who have Lupus. I'm not saying that's what it is but definitely worth checking out. I have Psoriatic Arthritis and red, hot ears and facial redness. Sometimes the sun affects my skin like that too. So far I've tested negative for Lupus and have not tracked down the cause of the redness. Rosacea also can cause redness, burning etc. Keep asking and researching. It might help to journal about it so you may expose a pattern. God bless you and your little one.
I have the same symptoms where its not just on ears. It also goes onto my arms and seems to be getting worse and more frequent. It also seems more often in the winter/spring for me. I live in AZ so I might just think its the heat but very often people tell me that im getting a sunburn but I can tell that its just the heat or something and that it will go away eventually (not a sunburn). I dont know if thats normal to seem to have a sunburn just from heat. I wrote more above. I have kept a small log of the symptoms as they develop, but I havent written any times because its so frequent. I have never been to that mountain or any where near it though. Im willing to help anyway I can to figure out what this is.
I would be interested as I have suffered from red burning ears on and off for many years. I am now 57. I find that I get them every evening now in the cooler months of the year. Sometimes just one, sometimes both burn at once. I find that putting hot water on them is better than cold, as when you remove the 'hot' sensation, the air around the ear feels colder, hence the ear starts to cool down. Also putting something on them like 'sunburn cream' helps. Cheers.
this is nearly a year after you posted this and i can only hope that you have started this web site, i am 22 and have been dealing with this for 2 years. my symtoms are never constante, and seem to fluxuate from better to worse. i have kept in mind adhd, odd etc. but of coarse drs. have no clue. the only thing i have been able to pin point is mild or severe back,neck pain and stress, anxiety, anger, or simply being un easy in your current sittuation. i ask all of you (red ear troops) to examin what exactly is going on in your lives while this burning sensation occurs. ihave found that anything from a new relationship to aggrivation at the work place may cause our problem. think about it has this ever happend when you are perfectly content with your life. my answer is no. anyways i am serious about this and the only way we can make something happen is if we work together! if there are this many of us it cannot be as rare as we all once thought it was. so i implore you to please make this web site and let us find or own answers.
I have noticed exactlythe same thing. I am in outside sales. During the day Iam driving and I am fine. If I make a sale, I am fine. WenI am confronted with a customer that is not buying, I my left ear gets red an hot. Please note that this is usually in the evenings. I had an episode the other day, I was watching football relaxing. In come the kids with a lot of noise and WHAM here it is again. There is no question in my self diagnosi that this is stress related. I am not sure how to handle this issue. It has only started with in the last six months. The first time it happened I freaked out and went to the hospital. The ran blood tests and heart test. All were fine. No doctors can diagnose. ihave been to a cardio doc. No clue. They just say, "It doesn't appear to be life threatening." What do you think?
Get re-tested for Lyme, there are a lot of people who get tested and get false negatives. Go to a Dr. who really knows Lyme. I saw a program on Discovery channel on this, and the guy was literally about to die when he found a Dr. who diagnosed him when he had been tested and they said he didn't have Lyme...he did.
Hi Wendy - I have the exact same situation. I drove up to Steven's Pass and on the way back, i felt my ears fume up. I would like to be involved in the investigation and would love to contribute. Please email me and we can take this forward.
Was wondering what even happened to your study idea. Its been a year or two since you posted about it. Happened upon it just today. Also was wondering about the washington thing. I am origionally from Gresham Or. Now live in Nebraska. But have had this issue for years. Let me know. Thanks.
wendy, I am a clinical director of a hospice in mass. I have a few ideas in regards to these symptoms. My 35 yo sister has been fighting similar symptoms, since moving to conecticut (the lyme state). they are treating her for RA but quite sure this is lyme ( if you do research doctors are not allowd/it is illegal to treat lyme past the 30 day corse of antibiotics. therefore they cannot admit to lyme as issue. My husband tested negative for all lyme test for 3 months then multiple red odd shaped rings showed on his body for all of 5 minutes they treated him the 30 day tx and would not treat for longer even though he still had symptoms. he is going to see a RA md so he can at leaste start minocyclin regiem "for RA" really lyme. My 7 yr old son with some of these symptoms especially dry mouth and red hot ears occasional aches and pains had been bit by a tick. But all three have somthing in common that needs attention they all have enormous tonsills. Most likely strep carrier etc. the corrilation with all of this is it is the tonsills that run the overproduction of lymph cells that would cause some of these auto immune symptoms. DO you happen to have huge tonsills. ?how many people who had there tonsills removed have any autoimmune issues? (I bet not many) all very interesting questions.
Comment
I developed this "red ear syndrome" about 6 years ago, a month or so after returning from a mountain climbing trip to Mt.Rainier and Mt.Baker in August. It began as a hot, flushed, burning sensation on the left side of my face and forearm as I was driving home form work about 3-4pm. I thought it was just the sun shining through my car window. Next it would occur in the afternoon when I was at the gym and it was then that I noticed in the mirror how red my ear was. I am a nurse anesthetist so I immediately began to record my symptoms and when they occurred and I was also able to measure that the local skin temperature does increase when the flushing begins suggesting that this is some sort of neurovascular syndrome. I asked several surgeons about it and no one had a clue. I saw my Interal Med. MD who ran every test known to man. Then I saw a neurologist and a rhuematologist, both of which had no clue what this might be or any suggestions. The frequency of occurance and the intensity of my symptoms progressed over about 6 months to include burning along my left lateral thigh, calf and the sole of my foot. Eventually it spread to the right side but the flushing/ burning occurs only on one side at a time and only rarely on the right side. I can no longer wear socks or a hat because they are always burning to some degree and I feel as if I am overheating and might faint. The burning does not follow any nerve dermatone zones and does not appear to be linked to stress levels, alcohol intake, weather, but it does seem to occur more in the fall/winter for me and in the afternoon or night hours. But I live in SC so it might just be so hot that I don't actually notice the burning as much during the warmer months. After about a year my symptoms and flushing episodes sort of leveled off and have been stable ever since. The scary part is that I returned to Mt. Baker and Rainier the next fall with some friends and about a month after our return my climbing partner (Mark) and another friend (Pat) developed the same syndrome!!!!! We were all negative for Lyme's disease (which was every MD's 1st bet) Sojourns, Relapsing Polychondritis, fibromyalgia, carcinoid syndrome, an assortment of autoimmune disorders. You name it, we all got tested and were negative plus we are all pretty much healthy otherwise. Pat and I work at the same hopital but the mountain trips are the only common link that the 3 of us share. We all had mild flu like symptoms after we summited and then developed knee joint pain and then the flushing started. Now we all have very dry mucus membranes, just in the nose and have nose bleeds. Our MD's settled on either a chemical or biological toxic exposure (perhaps from melting snow for water) that produced some sort of neurological damage that also involves the vascular system and may involves the sympathetic nervous sytem. But if any of you out there have any thing similar to what we have then the Mountain trips can not be the causal link. Some one needs to start compiling a data base of symptoms and the onset and patterns of occurance. Pat (also a nurse with a PhD in Public Health) and I might be interested in developing a web site that would have persons with this syndrome complete a questionaire/assessment tool to be used to gather data and look for a common link. We are trying to pitch this idea to our Internal Med. Docs and maybe the local university public health department. It would be great to include a university that has a program in epideminology. If anybody out there has symptoms similar to ours or if you are interested in helping us try to launch this "data collection" project, please reply. Thanks
Parent comment
I've had that happen while doing qi gong and during meditation. No explanation yet!
Replies
I've had this for so many years I thought I was used to it. Til today. It has ALWAYS been my right ear and today around 5 pm I went to the john and noticed it was my left ear! For what it's worth, I'm 53, female, on hormones, ADHD, AB+,and chubby. Sometimes my nose burns too, and gets red. My ear is not just red, it's PURPLE! I have been known to put ice on it, to no avail. It goes away in about an hour. I've never documented the time of day or my moods but maybe I will now.
Wendy,
When I read about problem occuring after your trip to Mt Rainer & Mt Baker It caught my attention. We live at base of Mt. Rainer and I have joked here that it's our water affecting so many pepole here with cancer in our town.... But I have had the red buring ear mostly the left for some time. My feet and stomach have been affected with the same burning sensation but its been a couple of years and I thought it was the start of menopaause. But this only started after moving here to Washington State I've been here 13 years. Also very dry mucas menbrane and tonight had another nose bleed.... So here to Data Collection
I would be very interested in this. My 11 year old son has suffered from red hot ears for several years. He has had a bad episode these past few weeks. His ears get so hot that he cannot sleep. He puts ice packs on his ears in order to get some relief. He wakes up during the night when the ice packs wear off. I have been making several trips a night to the freezer. I have mentioned this to my pediatrician in the past and they just say they have never heard of this. We went to an ENT once and he acted like I was crazy. We need help.
Kelly,
My son of 13 years old is having the same problem. He too puts ice on his ears. There does not seem to be a pattern of activity that trigers it. However I notice a few people mentioned they were ADHD/ADD and my son may be as well. We are in the process of having him tested.
I have recently noticed my 6 yr old son's right ear gets very hot and very red and the other one is normal and I am just online now researching this and he has been diagnosed with ADD. I wonder if there is any connection. I have not mentioned this to our Ped. yet but will.
Kelly,
I have a ten year old son with the same problem. He usually sleeps with wet/cold washcloths on his ears. Our ENT said he HAD heard of this condition. I don't remember what it was called, but he said it actually had to do with the cartilage or tendons in the ears becoming inflamed-not blood vessels like everyone assumes. The only relief is steroids, and since they can only be used temporarily, it's not really a solution. He also said it may never get worse, or it may be an indicator of some sort of tendon/cartilage disease he may get when he becomes an adult.
Hope this clears up the mystery. My son also has ADHD, but I don't think it has anything to do with it. I have another child with ADHD and he does not have this inflamed ear burning problem.
Linda
I have had this problem with my ears for years now. It actually started with my cheeks and would normally occur when I was stressed, angry, or embarrassed. Then it started in my ears and has been happening everyday for a couple of weeks now. I noticed the other day that my daughter, who is only 18 months old, had the red hot ear problem, but it was only her right ear. That's when it started to bother me. I've never worried about it before, I just figured maybe my blood pressure was up. But when I saw that my baby had the same thing, that's what made me want to start to research this problem. She has now come down with pneumonia and I am just getting over bronchitis, so I don't know if that has anything to do with it. I've never really mentioned it to a doctor because I figured they would think I was just crazy. Now that I see that this is something that happens to a lot of people, I am definitely going to mention it to our doctors. I know that I am O+, I don't know what my daughter's blood type is. As far as I know I don't have ADD or ADHD or ODD. I am 24 years old and overweight but am currently taking Phentermine to lose weight. I've never really kept track of the time of day or anything because I just assumed it was something normal thing for me. Like I said, I've had it for years, as long as I can remember. And for me it gets worse in the summer. Once I go outside my cheeks will get burning hot, and now my ears do too. But the worse part about it is that even after I go inside, I can't cool down, sometimes for hours. If I'm in the car I have to have the air conditioner on full blast and pointed directly at my face, otherwise, it burns really bad and feels like my face is tightening up. I've noticed that the sun really plays a big part in it because sometimes, even during the winter, only my left ear and cheek will get red and hot while I'm driving. But if I can get out of the sun, sometimes that helps. I do not want my daughter to go through what I have gone through with this problem so if anyone finds out anything, please let me know. Thank you.
Have you seen your md? It sounds like sun sensitivity may be a problem.
I have a few friends who have Lupus. I'm not saying that's what it is but definitely worth checking out.
I have Psoriatic Arthritis and red, hot ears and facial redness. Sometimes the sun affects my skin like that too. So far I've tested negative for Lupus and have not tracked down the cause of the redness. Rosacea also can cause redness, burning etc.
Keep asking and researching. It might help to journal about it so you may expose a pattern.
God bless you and your little one.
Dear friend.
Mi name is Agustin.
Could you solved this problem? i have EXACTLY your same condition.
thanks in advance!
Agustín
I have the same symptoms where its not just on ears. It also goes onto my arms and seems to be getting worse and more frequent. It also seems more often in the winter/spring for me. I live in AZ so I might just think its the heat but very often people tell me that im getting a sunburn but I can tell that its just the heat or something and that it will go away eventually (not a sunburn). I dont know if thats normal to seem to have a sunburn just from heat. I wrote more above. I have kept a small log of the symptoms as they develop, but I havent written any times because its so frequent. I have never been to that mountain or any where near it though. Im willing to help anyway I can to figure out what this is.
I would be interested as I have suffered from red burning ears on and off for many years. I am now 57. I find that I get them every evening now in the cooler months of the year. Sometimes just one, sometimes both burn at once. I find that putting hot water on them is better than cold, as when you remove the 'hot' sensation, the air around the ear feels colder, hence the ear starts to cool down. Also putting something on them like 'sunburn cream' helps. Cheers.
this is nearly a year after you posted this and i can only hope that you have started this web site, i am 22 and have been dealing with this for 2 years. my symtoms are never constante, and seem to fluxuate from better to worse. i have kept in mind adhd, odd etc. but of coarse drs. have no clue. the only thing i have been able to pin point is mild or severe back,neck pain and stress, anxiety, anger, or simply being un easy in your current sittuation. i ask all of you (red ear troops) to examin what exactly is going on in your lives while this burning sensation occurs. ihave found that anything from a new relationship to aggrivation at the work place may cause our problem. think about it has this ever happend when you are perfectly content with your life. my answer is no. anyways i am serious about this and the only way we can make something happen is if we work together! if there are this many of us it cannot be as rare as we all once thought it was. so i implore you to please make this web site and let us find or own answers.
David,
I have noticed exactlythe same thing. I am in outside sales. During the day Iam driving and I am fine. If I make a sale, I am fine. WenI am confronted with a customer that is not buying, I my left ear gets red an hot. Please note that this is usually in the evenings. I had an episode the other day, I was watching football relaxing. In come the kids with a lot of noise and WHAM here it is again. There is no question in my self diagnosi that this is stress related. I am not sure how to handle this issue. It has only started with in the last six months. The first time it happened I freaked out and went to the hospital. The ran blood tests and heart test. All were fine. No doctors can diagnose. ihave been to a cardio doc. No clue. They just say, "It doesn't appear to be life threatening." What do you think?
Get re-tested for Lyme, there are a lot of people who get tested and get false negatives. Go to a Dr. who really knows Lyme. I saw a program on Discovery channel on this, and the guy was literally about to die when he found a Dr. who diagnosed him when he had been tested and they said he didn't have Lyme...he did.
Hi Wendy - I have the exact same situation. I drove up to Steven's Pass and on the way back, i felt my ears fume up. I would like to be involved in the investigation and would love to contribute. Please email me and we can take this forward.
Was wondering what even happened to your study idea. Its been a year or two since you posted about it. Happened upon it just today. Also was wondering about the washington thing. I am origionally from Gresham Or. Now live in Nebraska. But have had this issue for years. Let me know. Thanks.
Did you every have exposure to mold? Eye swelling/eye infection? Were you bitten by Black Fly in the Mountains?
wendy,
I am a clinical director of a hospice in mass. I have a few ideas in regards to these symptoms. My 35 yo sister has been fighting similar symptoms, since moving to conecticut (the lyme state). they are treating her for RA but quite sure this is lyme ( if you do research doctors are not allowd/it is illegal to treat lyme past the 30 day corse of antibiotics. therefore they cannot admit to lyme as issue. My husband tested negative for all lyme test for 3 months then multiple red odd shaped rings showed on his body for all of 5 minutes they treated him the 30 day tx and would not treat for longer even though he still had symptoms. he is going to see a RA md so he can at leaste start minocyclin regiem "for RA" really lyme. My 7 yr old son with some of these symptoms especially dry mouth and red hot ears occasional aches and pains had been bit by a tick. But all three have somthing in common that needs attention they all have enormous tonsills. Most likely strep carrier etc. the corrilation with all of this is it is the tonsills that run the overproduction of lymph cells that would cause some of these auto immune symptoms. DO you happen to have huge tonsills. ?how many people who had there tonsills removed have any autoimmune issues? (I bet not many) all very interesting questions.
Please do. That would be wonderful.