ellienewfan
@ellienewfan
@ellienewfan
Posts: 9
Joined: Feb 04, 2013
extreme outer ear pain
Please….someone help me.
I’ve visited my allergist, an ear-nose-throat specialist and my own internist.
None of them have ever heard of my problem and don’t know how to help me.
Started approx 20 yrs ago, Every couple of months I would get an awful pain on one of my ears if I had been laying on it during the night. It would happen to either ear, whichever one I laid on.
To describe the pain. It is so intense that it wakes me. Pain is NOT inside the ear but around the edges of the entrance of it. It is so painful, I can’t touch it. It will be throbbing. It also hurts tremendously behind, towards the bottom back of the ear. Can’t touch that either. The only thing that will make it go away is when I then get up and stand and within approx 30 min it is gone. I even tested it by massaging behind the ear (once I could bear to touch it) and it seemed to make pain go away faster.
The last approx 3 years, I have no longer been able to even lay on either ear when in bed because now the pain will come every time. I have learned to sleep on my back. Sometimes I would still move onto my side during night, and wake up with pain.
For last 6 months, I’ve been having pressure and achy feeling around one of the ears, even while laying on my back. Then I started getting the pain even while sleeping on my back.
I am very much afraid that the day will come when I will no longer be able to lay down in my bed to go to sleep.
I am desperate to get to the bottom of this and perhaps for first time in 20 years be able to comfortably lay on my side in bed.
My ENT doctor said my ears are healthy …. i have no hearing loss.
This ear pain, however, is starting to affect my daily living, since I don’t seem to be able to get the restful sleep I need.
I will be forever grateful if someone could pinpoint this. thanks.
Liked by Gail, Alumna Mentor, lioness
rosesareredmylove2016
@rosesareredmylove2016
@rosesareredmylove2016
Posts: 63
Joined: Mar 15, 2016
@bearylynn I’ve had same symptoms for 20 years.
When I sleep on my side, I bunch edge of memory foam (lightweight) pillow under my neck so force of ear on pillow is minimal.
Also – when really acting up – small amount of terazol cream (yes, it’s a ‘vaginal’ yeast cream — and I’ve also used it for yeast in my dog’s ear) on a q-tip swabbed around the ear canal.
In 2007, I had ear tubes placed (not related to this). My left ear, which is the one with the soreness problem, became VERY painful and would bleed when I slept on my left side. After deciding drum was infected at the tube, it was removed. Surgeon was surprised at how infected it was — even needed to patch the drum. I think that’s when I decided to try to treat for yeast.
Well, I’m glad to know I’m not being crazy when I go too myENT with this issue, I’ve had outer ear pain about every 2 or 3 months, comes and goes. Seems it gets worse for me when I lay on it. Ive been to my ENT, and lat time it was MRSA….Yea…..But now the say thats gone, and the pain I feel could just be from my Brain surgery 3 years ago….Cartlidge healing????? It still hurts some days and my ENTgave me creme for my ears to stop the itching…Helps some, doesn’t stop the pain at the base of my ear…
Liked by Gail, Alumna Mentor
Nibor63
@nibor63
@nibor63
Posts: 62
Joined: May 16, 2017
@jennyt I’ve had this same problem for over 10 years and spent hundreds of dollars on different pillows. I get headaches in the morning because I don’t get enough sleep. I finally found an article that makes sense and I plan to go see my doctor to get tested for “relapsing polychondritis”. I think I have a mild case of this and hopefully my doctor can prescribe something. I am really tired of the sleepless nights and pain
I have seen ENT, Rhuematologist, Neurologist, Orthopedist, Oncologist, had all annual exams, Gastroenterologist, and more. Most told me I’m Crazy. That was including two PCP’s. Trying to find new PCP. I have foot pain, low back pain, and now some blurred vision in right eye. Just saw Optometrist. Saw spot on Retina in right eye. Going to see specialist next week. Scared. Had blood work to test for inflammation, came back negative. White blood cell count is up, but not over normal range. Doctors not concerned.
Teresa, Volunteer Mentor
@hopeful33250
@hopeful33250
Posts: 8246
Joined: Mar 28, 2016
@jennyt I’ve had this same problem for over 10 years and spent hundreds of dollars on different pillows. I get headaches in the morning because I don’t get enough sleep. I finally found an article that makes sense and I plan to go see my doctor to get tested for “relapsing polychondritis”. I think I have a mild case of this and hopefully my doctor can prescribe something. I am really tired of the sleepless nights and pain
@nibor63 Hello – It sounds as if you have seen a lot of doctors and had a lot of tests. I can understand your frustration at not having a diagnosis and therefore not getting a treatment plan. I see that you were going to schedule a biopsy of the ear. If that has been done, do you have any results from that yet? I understand that doctors can seem quite unconcerned when the diagnosis is not obvious to them, but I would encourage you to keep trying to find a doctor who can offer you some new suggestions. If you live near a large medical center or medical school they are often able to offer some expertise that smaller hospital systems don’t have. Do you live near one of the Mayo facilities (Minnesota, Florida or Arizona)? Best wishes as you continue this journey to find a diagnosis and a treatment for your problems. Teresa
Nibor63
@nibor63
@nibor63
Posts: 62
Joined: May 16, 2017
@jamienolson Hello, @jennyt and @gls58, Welcome to Mayo Clinic Connect! Thank you for participating in our community. Sharing our personal medical stories and learning from each-other is our goal and looks like we are already off to a great start with the discussions you have both posted.
I would like to call back and introduce members @upartist, @ellienewfan, @bearylynn and @jfortinofish1 to reignite this topic of conversation. When this topic started in 2013 the posts that were made by our members have hopefully gotten some answers and relief. Can you all please give us an update? Have any of you had success with a diagnosis or do you have pain management in place that makes it now bearable to sleep at night?
@jennyt, sorry to hear you are having sleepless nights and pain, I bet that is really frustrating. When do you see your physician? Would you mind coming back and letting us know what they say about your condition? Can you also tell me- Do your ears feel hot and or flare up?
@gls58, so glad to hear you have found some pain relief! That is great news. How long did you suffer in pain before trying the calcium/vitamin D regimen? Was the post that you read stating to try the calcium/vitamin combo in Mayo Clinic Connect? If so, I could try and locate it for you. I would just need to know what group it was in.
Just had biopsy of my ear for this same thing. Found increased white blood cells in tissue. Found swollen lymph nodes in neck just under ears. Going for ultrasound, biopsy of nodes. Doc says not related but I think it is.
Nibor63
@nibor63
@nibor63
Posts: 62
Joined: May 16, 2017
@jamienolson Hello, @jennyt and @gls58, Welcome to Mayo Clinic Connect! Thank you for participating in our community. Sharing our personal medical stories and learning from each-other is our goal and looks like we are already off to a great start with the discussions you have both posted.
I would like to call back and introduce members @upartist, @ellienewfan, @bearylynn and @jfortinofish1 to reignite this topic of conversation. When this topic started in 2013 the posts that were made by our members have hopefully gotten some answers and relief. Can you all please give us an update? Have any of you had success with a diagnosis or do you have pain management in place that makes it now bearable to sleep at night?
@jennyt, sorry to hear you are having sleepless nights and pain, I bet that is really frustrating. When do you see your physician? Would you mind coming back and letting us know what they say about your condition? Can you also tell me- Do your ears feel hot and or flare up?
@gls58, so glad to hear you have found some pain relief! That is great news. How long did you suffer in pain before trying the calcium/vitamin D regimen? Was the post that you read stating to try the calcium/vitamin combo in Mayo Clinic Connect? If so, I could try and locate it for you. I would just need to know what group it was in.
May want to have lymph nodes in neck checked.
karenwithnomoreearpain
@karenwithnomoreearpain
@karenwithnomoreearpain
Posts: 10
Joined: Jul 25, 2017
I suffered for 11 years of outer ear pain at night! It was a fluke how i discovered what 100% cured. I never new others suffered untill a friend told me there problem. I googled and was amazed at all the forums out there. This also cured my friend, thats why i am trying to share to all I can. For 11 years eveynight, i would wake up 1-3 times a night in excruciating pain. Would last 2-7 min after sitting up. Went to many doctors. No answer.
I went to a chiropractor for a horrible shoulder/neck pain. He mention i should by this pillow. $115.00 ! Ouch. I was desperate. Needless to say never helped my shoulder/neck. Just had to wait it out. But i did notice from first night no ear pain. Didnt think the pillow would have helped. Just thought it was a fluke. Days go buy, no ear pain. Of course i still dont think the pillow had anything to do with it. Just thought I grew out of it as things come and go. I was traveling, had to stay at a hotel. Low and behold 1st night ear pain! Woke up 3 times in excruciating pain. Suffered 4 more nights. Went home 1st night no pain! Needless to say bought a travel size. Bad thing is it has water it in. So be careful you you are flying. I have not been stopped at the airport yet. But you can always drain it first. I am not affiliated with the company what so ever! Want to make that clear. It is called the chiroflow pillow. Its been 7 years of no ear pain, except a few occasions when i forgot to bring it. After you forget it a few times, you learn to pack it first. Good thing is you can buy it alot cheaper on amazon for around $40.00. Please let me know if this works for anyone out there!!!!!
Karen
Liked by Teresa, Volunteer Mentor, Jamie Olson
Jamie Olson
@jamienolson
@jamienolson
Posts: 539
Joined: Apr 21, 2016
Hello @karenwithnomoreearpain, Welcome to Mayo Clinic connect. Thank you so much for sharing your experience. Others will find this information helpful.
@ellienewfan, have you tried this pillow? Do you have any questions for Karen?
danavs
@danavs
@danavs
Posts: 25
Joined: Oct 04, 2016
@karenwithnomoreearpain I suffered for 11 years of outer ear pain at night! It was a fluke how i discovered what 100% cured. I never new others suffered untill a friend told me there problem. I googled and was amazed at all the forums out there. This also cured my friend, thats why i am trying to share to all I can. For 11 years eveynight, i would wake up 1-3 times a night in excruciating pain. Would last 2-7 min after sitting up. Went to many doctors. No answer.
I went to a chiropractor for a horrible shoulder/neck pain. He mention i should by this pillow. $115.00 ! Ouch. I was desperate. Needless to say never helped my shoulder/neck. Just had to wait it out. But i did notice from first night no ear pain. Didnt think the pillow would have helped. Just thought it was a fluke. Days go buy, no ear pain. Of course i still dont think the pillow had anything to do with it. Just thought I grew out of it as things come and go. I was traveling, had to stay at a hotel. Low and behold 1st night ear pain! Woke up 3 times in excruciating pain. Suffered 4 more nights. Went home 1st night no pain! Needless to say bought a travel size. Bad thing is it has water it in. So be careful you you are flying. I have not been stopped at the airport yet. But you can always drain it first. I am not affiliated with the company what so ever! Want to make that clear. It is called the chiroflow pillow. Its been 7 years of no ear pain, except a few occasions when i forgot to bring it. After you forget it a few times, you learn to pack it first. Good thing is you can buy it alot cheaper on amazon for around $40.00. Please let me know if this works for anyone out there!!!!!
Karen
Hello @karenwithnomoreearpain. Please tell us the name of this pillow and where we can buy it. Thanks for the info. @danavs.
karenwithnomoreearpain
@karenwithnomoreearpain
@karenwithnomoreearpain
Posts: 10
Joined: Jul 25, 2017
@karenwithnomoreearpain I suffered for 11 years of outer ear pain at night! It was a fluke how i discovered what 100% cured. I never new others suffered untill a friend told me there problem. I googled and was amazed at all the forums out there. This also cured my friend, thats why i am trying to share to all I can. For 11 years eveynight, i would wake up 1-3 times a night in excruciating pain. Would last 2-7 min after sitting up. Went to many doctors. No answer.
I went to a chiropractor for a horrible shoulder/neck pain. He mention i should by this pillow. $115.00 ! Ouch. I was desperate. Needless to say never helped my shoulder/neck. Just had to wait it out. But i did notice from first night no ear pain. Didnt think the pillow would have helped. Just thought it was a fluke. Days go buy, no ear pain. Of course i still dont think the pillow had anything to do with it. Just thought I grew out of it as things come and go. I was traveling, had to stay at a hotel. Low and behold 1st night ear pain! Woke up 3 times in excruciating pain. Suffered 4 more nights. Went home 1st night no pain! Needless to say bought a travel size. Bad thing is it has water it in. So be careful you you are flying. I have not been stopped at the airport yet. But you can always drain it first. I am not affiliated with the company what so ever! Want to make that clear. It is called the chiroflow pillow. Its been 7 years of no ear pain, except a few occasions when i forgot to bring it. After you forget it a few times, you learn to pack it first. Good thing is you can buy it alot cheaper on amazon for around $40.00. Please let me know if this works for anyone out there!!!!!
Karen
Chiroflow, you can buy it on amazon now, around $40
gls58
@gls58
@gls58
Posts: 15
Joined: Mar 31, 2017
@karenwithnomoreearpain I suffered for 11 years of outer ear pain at night! It was a fluke how i discovered what 100% cured. I never new others suffered untill a friend told me there problem. I googled and was amazed at all the forums out there. This also cured my friend, thats why i am trying to share to all I can. For 11 years eveynight, i would wake up 1-3 times a night in excruciating pain. Would last 2-7 min after sitting up. Went to many doctors. No answer.
I went to a chiropractor for a horrible shoulder/neck pain. He mention i should by this pillow. $115.00 ! Ouch. I was desperate. Needless to say never helped my shoulder/neck. Just had to wait it out. But i did notice from first night no ear pain. Didnt think the pillow would have helped. Just thought it was a fluke. Days go buy, no ear pain. Of course i still dont think the pillow had anything to do with it. Just thought I grew out of it as things come and go. I was traveling, had to stay at a hotel. Low and behold 1st night ear pain! Woke up 3 times in excruciating pain. Suffered 4 more nights. Went home 1st night no pain! Needless to say bought a travel size. Bad thing is it has water it in. So be careful you you are flying. I have not been stopped at the airport yet. But you can always drain it first. I am not affiliated with the company what so ever! Want to make that clear. It is called the chiroflow pillow. Its been 7 years of no ear pain, except a few occasions when i forgot to bring it. After you forget it a few times, you learn to pack it first. Good thing is you can buy it alot cheaper on amazon for around $40.00. Please let me know if this works for anyone out there!!!!!
Karen
FYI – read through the reviews before purchasing this one. Apparently the real Chiroflow pillows are only available through chiropractors and are not sold “online”. Even their official website refers you to a chiropractor that sells them with no way to order one directly. I don’t know how they could get away with using the name brand and logo if they aren’t real if that is the case. Just a good idea to research before buying.
karenwithnomoreearpain
@karenwithnomoreearpain
@karenwithnomoreearpain
Posts: 10
Joined: Jul 25, 2017
Nibor63
@nibor63
@nibor63
Posts: 62
Joined: May 16, 2017
@bearylynn Based on my experience, you may never get answer [or maybe you will???}
I believe I have a chronic, low grade infection – perhaps fungal or bacterial.
I have had great relief for a little while now {it feels wonderful to be able to sleep on my left side for the 1st time in so long}.
I’ve been recently using infrared heat to warm up multiple painful body locations, which happen to include ears, neck and sinuses, as well as LOTS of other areas on my EDS/body of chronic pain. At this time it is helpful.
I believe the heat kills whatever low-grade infection may be lingering in the area.
I will NOT give any advice about the heat therapy. I would leave the decisions related to the infrared heat use completely up to you and whatever you decide/discover/research on the topic.
Take note though, that many saunas use infrared as the heat source.
Good luck. Let me know if you ever do have any improvement if you know the reason for the improvement.
It’s called Relapsing Polychondritis. If your nose seems infected with it too. Also, can appear in other connective tissue. Can get biopsy of ear tissue which will confirm or not.
Nibor63
@nibor63
@nibor63
Posts: 62
Joined: May 16, 2017
@ellienewfan at least i’m not alone in this. no redness, no swelling, etc. Doctors i saw (ear, nose, throat doc.; my own internist; had exrays and MRI) looked at me funny when i tried to explain my situation. thanks @bearylynn,i also have been bunching up a pillow so there is least amount of touching my ear. i seem to be able to somewhat lay on my left side, but my right cannot abide it. in fact if i even lay on right side even without anything touching my ear, i’ll still get it.terrible pain. i am currently 72, and think that perhaps i’ll never get rid of this and must suffer with this for rest of my life.
See ENT. Get ear biopsy to test for Relapsing Polychondritis.
Nibor63
@nibor63
@nibor63
Posts: 62
Joined: May 16, 2017
@jennyt I’ve had this same problem for over 10 years and spent hundreds of dollars on different pillows. I get headaches in the morning because I don’t get enough sleep. I finally found an article that makes sense and I plan to go see my doctor to get tested for “relapsing polychondritis”. I think I have a mild case of this and hopefully my doctor can prescribe something. I am really tired of the sleepless nights and pain
It’s treated with Steroids, if that’s what it is.
@colleenyoung
Hi @franjan, @hopeful33250 and everyone reading this post.
The messages are listed in chronological order, meaning from oldest to newest message. However, members can post a reply to a message, which will make the messages appear out of order. Let me illustrate. Let’s say that a new message is posted everyday. The order of posts would appear like this:
May 1
May 2
May 3
May 4
May 5
If I want to respond on May 6 to the message that was posted on May 2, the discussion dates would now look like this:
May 1
May 2
— May 6
May 3
May 4
May 5
As the discussion grows, you could have something that potentially looks like this
May 1
May 2
— May 6
— May 7
— May 8
May 3
May 4
— June 2
— June 12
May 5
June 18
June 19
I hope this helps clarify.
Liked by Teresa, Volunteer Mentor