Red Ear Syndrome, anyone experienced it

You have my sincerest empathy over that tail bone nerve pain! I know it’s not a comparison but years ago I fractured my tailbone during a sledding accident. Holy crow! That pain lasted for the better part of a year! So I’m really sorry you’re having to deal with that long term.

But it looks like you finally had a good night sleeping in your bed…first time in 8 months! Wow, well I hope last night was equally as good for you! May be you’ve turned the corner on this pain. Hah, your urologist was very creative with the ice pack. Obviously this wasn’t her first rodeo! I’m happy for you that you’re getting some good advice from her!

Yes, I'm having GD for two years and a haIf and for some months I had the same problems on my ears; then they went back to normality. Why? I don't know! While all the rest is still bad...

@loribmt Thank you for being a volunteer ! Those first 2 nights were great then I bent to much and possibly pulled the wires out of place my pain went from a 6/10 to a 1/10 now it’s about an 8/10 very frustrating the pelvis back to hurting again. They need to tie me to a board after almost 2 years of feeling bad and all that pain was gone , luckily it wasn’t spring I might have been out doing yard work

@sbtheplumber1!! Oh nooooo!! This is distressing news. I’m so sorry to read the pain is back after 2 days of glorious relief! 😲 I can appreciate the joy you were experiencing with finally feeling like your old self again. Pretty easy to jump back into doing normal activities again. But dang!

I found a few discussions in the forum with other members who have had the implanted TENS unit. Wondering if you’ve read through any of these conversations? Here’s one to start with. Other comments can be found by typing Implanted TENS in the upper search bar.
https://connect.mayoclinic.org/discussion/for-spinal-stenosis-is-tens-implant-better-worse-than-external-tens/
Well, going forward, at least you know this level of comfort is possible, but sure disappointing right now to have the pain return. Hopefully this is just a temporary situation until the wires can be repositioned? I don’t know very much about the procedure you had done. Would this need to be another surgical procedure?

@loribmt Thank you I’ll look into that link ! I have searched a lot of health issues it’s hard to keep up. Yes if the leads moved and no longer helping they would have to go back in and move them. Not sure how insurance pays on something like this ,

My daughter is 14. This has gone on for maybe 5 or 6 years. It was only her ear but then moved to cheeks amd a recent bout that went down her chest. All doctors are clueless about it and chalk it up to some vasodilation. This happens daily, sometimes numerous times daily. If she has a day that it doesn't happen, she doesn't even know because it happens so often. No amount of research other than the typical causes of vasodilation and RES (red ear syndrome) have provided any useful information. Could this just be normal flushing? It is hot to the touch and last a few hours usually. It is embarrassing for her because EVERYONE notices because it just happens so quickly with often no apparent reason. Extreme activity and anger cause this but the heat, why the heat? Do you have any advice?

Hi @cnstory78 Your poor daughter! As if being a teenager isn’t difficult enough! I used to blush easily as a teenager but that was many decades ago and I guess I must have finally grown out of it. But it was embarrassing. So my heart goes out to your daughter to have this happen excessively. It reminds me of menopause with my 5 alarm hot flashes, aka. Power surges! 🥵

Which leads me to wondering if your daughter has ever had her hormone levels checked? Hormonal imbalances, high cortisol levels, particular vitamin or mineral deficiencies or overloads can play a roll in facial flushing.
It might be worth a consultation with an endocrinologist. Another option. if you have a practitioner where you live, is to have her be seen by a Functional Medicine Clinic.

I’m way beyond menopause but a good friend of mine who has been suffering from relentless hot flashes turned to acupuncture. This has helped her immensely to reduce the occurrences and severity. With subsequent acupuncture sessions about 6 weeks apart, she’s to the point of the flashes being very rare.
I have acupuncture treatments sessions regularly as well for neck/head/ upper back related issues. It’s virtually painless and keeps me free from headaches. It might be worth a try for your daughter. Acupuncture can have a calming effect on the entire body. Make sure the practitioner is licensed and certified. I hope your daughter can find some relief!

Has she had hormone levels evaluated?

I may need the acupuncture for my hot flashes as well. That's a good tip. She hasn't had them checked but I will suggest that at next appointment. Thanks.