I'm 47.I have multiple autoimmune disease, immunoglobulin defiency disease, dysautonomia w POTS and EDS. I have this condition. Very painful ears. I used to never be able to bend them, now they fold down. Can't tolerate glasses on my nose.
I'm 47.I have multiple autoimmune disease, immunoglobulin defiency disease, dysautonomia w POTS and EDS. I have this condition. Very painful ears. I used to never be able to bend them, now they fold down. Can't tolerate glasses on my nose.
Hello @monikamouse, I see that you have recently joined and would like to welcome you to Connect. You mentioned you have very painful ears. There is another discussion on Connect that you might want to read.
John, Volunteer Mentor | @johnbishop | Dec 4, 2019
Hello @mcwilliamssr -- Welcome to Connect. I thought I would answer your private message here in the discussion that you mentioned so all you have to when you receive the email notification for this post is click the View & Reply button at the bottom of the email. That will take you to this post you are reading. Then just click the Reply button below and type your question.
The question in your message if I read it correctly is that your wife came down with blue eyes and more recently the whites of eyes have a blue tint. She seems fatigued and at night for no reason, she starts coughing for several minutes then things calm down and she goes on to sleep. Could this be the early onset for relapsing Polychondritis?
I'm not able to answer your question since I have no medical training or background. I'm hoping other members can share their experience and symptoms that may help answer your question. Has your wife discussed her symptoms with her doctor?
Hi @polytina, welocme to Mayo Clinic Connect. You'll notice that I moved your message to this existing discussion about polychondritis. I did this so you can connect with @nibor63@mcwilliamssr@rpwarriorlady@monikamouse@ethellee97 and others talking about RP and sharing their experiences.
Can you share a bit more about yourself and what you're dealing with? What symptoms do you manage? What's the biggest challenge? Are you currently on any medication or have had other treatments that help?
I went through men’s pause starting in my 30’s, had some symptoms but not sick enough then. I was diagnosed in 2015 by Mayo Clinic and I got there just in time. I had severe ear pain, nasal pain, severe back pain, scleritis, trouble breathing, etc. ended up having open heart surgery at Mayo. I see my cardiologist and rheumatologist yrly. Before I went, I had been to different ER’s and doctors with no outcome. I was in so much pain that suicide was seriously thought about. I now am on several meds including Remicade and methotrexate which has helped a lot, but still have bad days more than good days.
When my symptoms started, I had already had RP (for 20 plus years and I hope someone knows what RP is) the red ears, painful nose, swollen eyes, my eyeballs feeling like they were going to pop out of my head, neck pain started in Jan 2019. Finally I was diagnosed with Relasping Polychondritis in September 2019. At the same time as my ears started turning red, (the outter temperature of my ears would get as hot as 106 degrees. I used an infrared temp gun. My ears were so painful. But at the same time as these symptoms started I also had what I described as going out. I thought I was going to sleep, while eating, but it has been happening since Jan 2019. The same time as the red ears, nose pain, eye pain etc.. Now the incidents are almost daily, my Pulmonologist gave me methocoline breathing test. I failed it. My Rheumatologist explained I was not expelling all of the air that I breathed in. When my Pulmonologist showed me the results of my breathing test. I had several before this with all numbers coming back right. Except once. But I was coughing at night and chocking, so she ordered a methocoline test, I asked her if that could be causing these things where I go out. Most times you can't wake me up. I really thought I was falling asleep. But she called it syncope and that it might be something to do with my vagus nerve, because it happened when I ate. So she said maybe chewing was causing something to pinch the nerve. And it was effecting my heart. So she put a heart monitor on me that day, I wore it for 7 days. I had 18 episodes of my heart beating about 200 beats a minute. But it only lasted at the most 15 seconds. I never even knew I had this problem. I never felt my heart beating fast. And I have lost 70 pounds, without trying in the last year. My Rheumatologist called it SVTC. He is really smart. He diagnosed my RP on my first visit. They sent me to a cardiologist who seemed concerned. He explained I was going unconscious. So the cardiologist ordered a tilt test and a complete two-dimensional transthoraic echocardiogram. But I did not fail the tilt test. But I never passed out standing up. Only in the chair. My two dimensional transthoraic echocardiogram stated Right side was good, but left side, left atrium is moderately dilated, mild mitral regurgitation, Mild tricuspid regurgitation and the LV Diastolic Dysfunction with decreased EF is indeterminate. Left ventricular systolic function is low normal. But since the Ejection Fraction was 50-55%, the PA said I should see a neurologist which I have already done this and all kinds of test. His conclusion was I was in autommune storm. That neurologist didn't have any answers. I also have RA, Sojgrens, Lymphocytic Thyroiditis, Hypothyroidism.
I want to know is it ok to go unconscious when you eat. Lasting more than 15 minutes, up 2 hours or longer. If my heart is causing this and did Relasping Polychondritis play a role in this? How do I stop this pass out episodes. Most of the time I dont even feel it happening. Sorry this was so long. But have you heard of this? Is my Echocardiogram ok?
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Any diagnosis. I have the same thing.
Wow! Meloxicam helps me too! Do you have a diagnosis?
Yes. I do
Hello @monikamouse, I see that you have recently joined and would like to welcome you to Connect. You mentioned you have very painful ears. There is another discussion on Connect that you might want to read.
> Groups > Ear, Nose & Throat (ENT) > extreme outer ear pain
-- https://connect.mayoclinic.org/discussion/extreme-outer-ear-pain/
Has your doctor given you any suggestions or treatments to help with the ear pain?
Mine too! Seen this in pregnant women. Seems to be hormone related.
Hello @mcwilliamssr -- Welcome to Connect. I thought I would answer your private message here in the discussion that you mentioned so all you have to when you receive the email notification for this post is click the View & Reply button at the bottom of the email. That will take you to this post you are reading. Then just click the Reply button below and type your question.
The question in your message if I read it correctly is that your wife came down with blue eyes and more recently the whites of eyes have a blue tint. She seems fatigued and at night for no reason, she starts coughing for several minutes then things calm down and she goes on to sleep. Could this be the early onset for relapsing Polychondritis?
I'm not able to answer your question since I have no medical training or background. I'm hoping other members can share their experience and symptoms that may help answer your question. Has your wife discussed her symptoms with her doctor?
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Helpful -
Hug
1 ReactionDoes anyone have Relapsing Polychondritis?
Hi @polytina, welocme to Mayo Clinic Connect. You'll notice that I moved your message to this existing discussion about polychondritis. I did this so you can connect with @nibor63 @mcwilliamssr @rpwarriorlady @monikamouse @ethellee97 and others talking about RP and sharing their experiences.
Can you share a bit more about yourself and what you're dealing with? What symptoms do you manage? What's the biggest challenge? Are you currently on any medication or have had other treatments that help?
-
Like -
Helpful -
Hug
3 ReactionsI went through men’s pause starting in my 30’s, had some symptoms but not sick enough then. I was diagnosed in 2015 by Mayo Clinic and I got there just in time. I had severe ear pain, nasal pain, severe back pain, scleritis, trouble breathing, etc. ended up having open heart surgery at Mayo. I see my cardiologist and rheumatologist yrly. Before I went, I had been to different ER’s and doctors with no outcome. I was in so much pain that suicide was seriously thought about. I now am on several meds including Remicade and methotrexate which has helped a lot, but still have bad days more than good days.
When my symptoms started, I had already had RP (for 20 plus years and I hope someone knows what RP is) the red ears, painful nose, swollen eyes, my eyeballs feeling like they were going to pop out of my head, neck pain started in Jan 2019. Finally I was diagnosed with Relasping Polychondritis in September 2019. At the same time as my ears started turning red, (the outter temperature of my ears would get as hot as 106 degrees. I used an infrared temp gun. My ears were so painful. But at the same time as these symptoms started I also had what I described as going out. I thought I was going to sleep, while eating, but it has been happening since Jan 2019. The same time as the red ears, nose pain, eye pain etc.. Now the incidents are almost daily, my Pulmonologist gave me methocoline breathing test. I failed it. My Rheumatologist explained I was not expelling all of the air that I breathed in. When my Pulmonologist showed me the results of my breathing test. I had several before this with all numbers coming back right. Except once. But I was coughing at night and chocking, so she ordered a methocoline test, I asked her if that could be causing these things where I go out. Most times you can't wake me up. I really thought I was falling asleep. But she called it syncope and that it might be something to do with my vagus nerve, because it happened when I ate. So she said maybe chewing was causing something to pinch the nerve. And it was effecting my heart. So she put a heart monitor on me that day, I wore it for 7 days. I had 18 episodes of my heart beating about 200 beats a minute. But it only lasted at the most 15 seconds. I never even knew I had this problem. I never felt my heart beating fast. And I have lost 70 pounds, without trying in the last year. My Rheumatologist called it SVTC. He is really smart. He diagnosed my RP on my first visit. They sent me to a cardiologist who seemed concerned. He explained I was going unconscious. So the cardiologist ordered a tilt test and a complete two-dimensional transthoraic echocardiogram. But I did not fail the tilt test. But I never passed out standing up. Only in the chair. My two dimensional transthoraic echocardiogram stated Right side was good, but left side, left atrium is moderately dilated, mild mitral regurgitation, Mild tricuspid regurgitation and the LV Diastolic Dysfunction with decreased EF is indeterminate. Left ventricular systolic function is low normal. But since the Ejection Fraction was 50-55%, the PA said I should see a neurologist which I have already done this and all kinds of test. His conclusion was I was in autommune storm. That neurologist didn't have any answers. I also have RA, Sojgrens, Lymphocytic Thyroiditis, Hypothyroidism.
I want to know is it ok to go unconscious when you eat. Lasting more than 15 minutes, up 2 hours or longer. If my heart is causing this and did Relasping Polychondritis play a role in this? How do I stop this pass out episodes. Most of the time I dont even feel it happening. Sorry this was so long. But have you heard of this? Is my Echocardiogram ok?