Wondering -- I was diagnosed by a very well informed neuro (dr. tepper at Cleveland Clinic) so I'm sure I have CH. But I feel like its in my jaw and neck a LOT as well. Does anyone else get TMJ from CH? is that possible? Or can it be the other way around??

Considering that the trigeminal nerve is right in the area where you'd have a TMJ flare-up, I wouldn't be surprised either way.  When I get an ear infection, it can often trigger an extra CH or two.  I'm guessing the swelling puts pressure on that nerve, or else it's referred pain from the nerves in my ear.  I've come to believe that the trigeminal nerves are like the Bermuda Triangle of pain for me.  I have to be aggressive in treating any eye, ear, neck, tooth, or jaw pain on that side, lest I get the nerves all worked up.

Hello,

Cleveland clusterhead here. I've had whats commonly called the cluster lump on my neck. Tighten neck muscles so tight it would hurt and ache for weeks.

Never had much with the jaw problems, But when in cycles my ears would ring like church bells.

Coach Bill.

My first (wrong) diagnosis was TMJ.  My clusters seem to effect my jaw area the most, although the pain is so severe it's hard to say what hurts the most.  Maybe I DO have TMJ along with clusters.  I never gave it any thought, until now.

Had my teeth ground down to realign my bite/jaw.  Did nothing to stop my CH.  Wrong diagnosis!

Yep.  They did the grinding thing, went through an intense TMJ treatment which included shocking my jaw muscles and I wore a bite guard for many years.  Of course none of that helped.  As with many of us, I self-diagnosed clusters by researching sites like this one.

Yeah I am glad I am not being misdiagnosed with TMJ, but I think that they have to have something to do with one another. I also have HORRIBLE neck pain. Sometimes my neck pain is worse than my eye. I actually used to go for massages before I was diagnosed but it wasn't helping at all. It sucks how much one nerve can effect! The only thing that has worked for me is DHE injections and redbull (I love the new total zero red bull!)

I get what feels like a bad tooth ache (upper jaw - same side) as well a bad tension pain in my neck.  Funny thing is the tooth ache pain ends as abrubtly as the CH - the neck pain lasts a little longer and sometimes needs a bit of help from Ibu.  I think it is the reaction to the CH - not real part of it.

My Doctor claims I have TMJ also. Maybe its causing my CH or my CH is causing it??
My pain is on my right eye but i Can feel the nerve wrapping around my temple and around my ear and down my neck to my shoulder. When its bad you can actually see it bulging from my neck. And my shoulder gets swollen.

But I have no pain from my Jaw?