Anyone experience Frey syndrome? Almost 3 years out of treatment and I just started developing this. It happens in front of my ear (sideburn area) after I eat at times, so weird!

Liz

First, not fair! You don't deserve this at all. I'm sorry you have this. I had to look up Frey's syndrome TX because all I knew is that it involved sweating so the first thing I thought of was to ask your doctor for Robinul. According to Dr. Google, the TX for Freys does include glycopyrrolate (generic for Robinul). The pill stops all sweating but the side effects include very dry mouth and sore throat. But if you only took one pill a day or even every other day,instead of the usual three it could work. (I have been trying Robinul)
Scary to read how Frey happens, the nerve attached to the sweat gland instead of the salivary gland.
Hope someone here on OCF knows more, but I could not bear to see one of your posts go unanswered for three days.
Charm

Ha! Thank you charm! I searched through some of the old posts and didn't find much on it although I noticed years back Jerry posted about experiencing it.

They told me I could do Botox if it was really bothersome but I'm hoping that if it's just a few beads of sweat then that shouldn't be anything bothersome that a little napkin couldn't take care of. Now if it was profuse sweating with lots of dripping then I may take them up on doing something about it.

I'm more or less curious if the symptoms get worse, better or stay the same with time. I had been noticing some zinging sensations on that side of my face so I figured something was trying to connect again!lol

Thanks!

Im not familiar with it. Had to look it up too. Sorry you are having after effect issues, Elizabeth!!!! You have gone thru more than enough already!

Hi Elizabeth ! I didn't reply to this thread because I had to look it also like Charm...but guess what ? I have this ! I didn't know it had a name ! I've had this ever since radiation (13 mos ago). It was annoying but I just chucked it off to some nerve thing. Happens every time I eat, only on the tumor side....not profuse, but enough that I am wiping it constantly while eating. I think in all this time I have gotten used to it. Strange for it to just show up now for you. Let me know if you decide to take something for it.

Wow, isn't that something Ingrid! Mine is only on the surgical site as well. I use to sweat when learning how to eat again, but that was all over, felt like I had a workout. This sweating is very minor just an odd feeling of something dripping down my sideburns.