Red Ear Syndrome, anyone experienced it

Hello,

I know this post is over a year old but I would like to share my experience.

I (46) was diagnosed with multiple sclerosis in October of 2022. Since then I have found I have A LOT of crazy conditions that comes with this awful sickness. I believe I have RES(self diagnosed lol). But I also have Raynaud's. The tip of my nose and my toes are ALWAYS cold. They just get worse in the winter. I also have chronic migraines(literally everyday all day). I’m being treated with Botox and about to start vyepti. I have Trigeminal Neuralgia and severe tinnitus. And lots of other fun things someone with MS has. But those are the most that’s close to my ear so I feel like 1 or all of them is the reason for my RES.

I also have issues with my tailbone. About a dozen years ago I fell down some stairs and I swear I hit my butt on every single step. I didn’t realize it until this year that I shattered it. My surgeon went and removed it.

Now I can say it doesn’t hurt like it used to. But it still hurts. I also ended up with a mean infection after that surgery so I had to have another to fix it and ended up on a picc line. Well between the infection and the harsh antibiotics my gallbladder gave out. I had that removed. Then ended up with pneumonia(I get that is someone sneezes in the next room). So now I’m going through a pretty bad MS flare. My drs are trying to find out why. I’m a walking medical mystery

@loribmt
I HAVE RED EAR SYNDROME AND HAVE BEEN DIAGNOSED BY A NEUROLOGIST. ON THE DAY OF MY APPOINTMENT I HAPPENED TO HAVE A ACUTE EPISODE OF R.E.S. I WAS GIVEN THE MEDICATION, INDOMETHACIN, BUT I DID NOT HAVE ANY POSITIVE RESULTS. MY R.E.S IS SECONDARY AND A DIRECT CAUSE OF SEVERE TEMPEROMANDIBULAR DYSFUNCTION CAUSING SECONDARY NERVE DAMAGE FROM MULTIPLE POST SURGICAL TMJ SURGERIES. I NOW HAVE A IMPLANTED SPINAL CORD STIMULATOR. IT DOES HELP. MY R.E.S IS TRIGGERED BY TOUCH, HEAT, TMJ PAIN, JAW MOVEMENT. THE EPISODES OCCUR DAILY AND CAN LAST FROM 1-4 HOURS. BESIDE THE NERVE STIMULATOR, I APPLY COLD COMPRESSES AND I USE FANS TO TRY TO DECREASE THE RED HOT EAR PAIN. MY R.E.S STARTED 8 YEARS AGO. I AM NEARLY 70 yrs OLD. I HAVE BILATERAL SEVERE TMJ DISEASE RESULTING IN SURGERIES ON BOTH SIDES. MY RIGHT TMJ HAS RESULTED IN REMOVAL OF MY CONDYLE. MY SURGERIES WERE DONE IN THE US AIR FORCE, IN THE LATE 1980’s AND THE NERVE DAMAGE ON THE LEFT HAS CAUSED MY R.E.S. IT HAS BEEN A DEFINITE ROLLER COASTER RIDE. BEST WISHES TO THE PERSON SUFFERING WITH R.E.S. I HOPE SHE CAN FIND RELIEF WITH SOME OF MY RECOMMENDATIONS.

Welcome to Connect, @1917 Oh my gosh, you’ve got quite a history with your TMJ surgeries, nerve damage and the red ear syndrome. As a retired dental professional, I can’t even imagine the incredible discomfort you’re dealing with on a daily basis. So thank you for sharing what has worked for you when dealing with the ear pain and heat associated with red ear syndrome.
I have to ask, what were your symptoms with TMJ that required jaw surgery on both sides and the removal of your left condyle? Was there malignancy involved?