haugr

Hyperadrenergic POTS and hot red ears

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I was diagnosed with H POTS a few weeks ago.  One odd symptom that I have is that my ears can turn red and are warm to the touch.  This has happened 4 or 5 times.  It isn't consistent which ear turns red either.  Sometimes it will be just one of them, sometimes both.  It seems to be related to my adrenaline spikes as I have noticed that my blood pressure has gotten really when I've measured it after this happens. 

Has anyone else ever had this?

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Welcome to the forum!!  In this place you will find an abundance of caring and extremely knowledgeable people! 

As to your question, my daughter has been experiencing this when her adrenaline surges, also.  She's suffering from severe neuropathy (guessing small fiber neuropathy) and that also seems to coordinate with her adrenaline.  In the evening when her adrenaline is trying to calm down, her neuropathy kicks into high gear.  She can be writhing in pain on the couch at night, we'll need to go to the ER because the nerve pain is so intense that her body is rendered paralyzed and this also affects her breathing.  By the time the doc comes in the room, she is usually somewhat better because her adrenaline has kicked in.  It is the strangest thing!  I hope you find some answers! 

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Wow, DG, so sorry; that must be so painful and scary for your daughter.   I am not that severe, but I get restless leg and aching in the legs, with neuropathy pain in the feet, every night on lying down, so can relate somewhat.  

Hi Haugr, and welcome to the forum.   I have not noticed it in the ears as much, but have had the same thing you describe in the face.   Only a couple times I had been not feeling well (dizzy, shaky, tachy) after a period of talking on the phone, and all of a sudden I felt like I was burning up, with facial redness.   I had never really had this before, so thought I had developed a high fever, but temperature at that time was actually low.  I think also that it has something to do with adrenaline surge, but interesting that DG felt that adrenaline "kicking back in" actually helped her daughter.  The fact that your blood pressure goes up with the redness would certainly suggest the POTS as the cause, wouldn't it?  From what I've gleamed from the forum, flushing can be a symptom of mast cell activation also, so something to keep in mind and/or mention to your doctor.   Best of luck.   Being newly diagnosed can be scary, but hang in there and do pop into the forum.   As DG said, very special people here!

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Thanks DG and Amy, I appreciate the responses.  I can't imagine watching my child go through what yours is going through DG.  That sounds really rough. 

I did speak to my doc about it this week and next time my ear flairs up I'll be doing a urine test for MCAD.  It will be interesting to see what comes from it. 

Thanks again!

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I had this happen but only while I was taking 10mg of amitriptyline (2 years), it was very strange! I had it in one or both ears, usually the right side.  Sometimes it would happen if I was exercising, panicking or feeling faint and it also seemed to go along with eating salty takeout food.  For me, it seemed related to adrenaline and migraines.  

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docradmd is right.  I started a post a couple of days ago looking for you!  My daughter was just diagnosed with erythromelalgia.  Hers is really intense.  She can't take the aspirin, makes her stomach sound like an active lava pool.  Found some information by a doctor that recently passed away (Dr. Cohen), but he's done a tremendous amount of research on EM (as it's referred to).  I thought it was an adrenaline thing, too, and maybe it is, but he explained it this way.  It's the time when the sympathetic nervous system is settling down and the parasympathetic is taking over.  That's sort of what allows the EM to kick in.  For my daughter, anyway.  When she relaxes in the evening is when all **** breaks loose.  All her ER visits are at night.  Hope this helps.  It seems to be a combo of neuro, vascular, and autonomic. 

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Thanks again everyone for helping me get to the bottom of this.

I did get tested for MCAD this last week and it came back negative.  

I just had my clonidine dosage increased since I posted this topic and it seems to have made a difference.

Thanks for the aspirin suggestion.  I will try it next time it comes on.  

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Thanks for letting us know, haugr.  Glad that MCAD was negative for you at least.   That's great that the increase in clonidine has helped; maybe it is an autonomic thing.  Hang in there!

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Hi folks. Just wanted to pipe in that there is not one test that is definitive for ruling MCAS out. It is very complicated to diagnose. Here is the most comprehensive paper I've found on MCAS. It includes the various and sundry ways it is diagnosed as well as an explanation as to how and why the diagnosis is difficult.  The tables and figures have a wealth of information in them. 

http://www.wjgnet.com/2218-6204/full/v3/i1/1.htm

 

Edited by Katybug

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