I’m so overwhelmed in trying to go through all the information of TN and others disorders that can mask themselves as TN. On July 1 had pressure in my left cheekbone. I thought maybe it was sinus related and was put on an antibiotic. It worked for 2 days and took it away but it came back. It wasn’t painful, just constant pressure. On July 16 this turned into a full fledged headache and I ended up in the ER for a migraine cocktail. It worked and I went home and had no pressure or pain for 2 days. Then it returned and was on both sides pressure in cheekbones. I had a ct sinus scan that showed nothing so my Ent said migraine issues. I bought an over the counter night guard and after a couple days of using it the pressure went away. It stayed away for two weeks but then returned, only on the right side this time. I went to my dentist and had a customized night guard made but wouldn’t be in for 4 weeks. In the meantime I made an appt with a neurologist. The pressure was in my cheek as a tight feeling and was made worse by moving my bottom jaw to the left. The pressure could extend to my temple and become more of a pain then pressure and sometimes could cause an all out headache. The only thing that would relieve it was hydrocodone…Otc meds did nothing. So I started taking one a week hair to get relief from the constant pressure for a few hours.

Jump ahead to September 20 when I met with the neurologist… He gave me a migraine relief med to try and it didn’t work. His suggestion was then amitriptylin but he didn’t give me a reason why and this communication was all by messaging via email I could never get someone on the phone or to respond so I decided to not take the medicine and see a different neurologist for better communication.

I also saw a “tmj specialist” on sept 28 who took a few X-rays and did a Panaromic X-ray as well and said my opening between bones in my jaw joint wasn’t bone on bone but was not the recommended 3mm but was about 1.5 mm. She poked around in my mouth and pressed in different areas on my face and said I had an overbite and Ernest syndrome on one side and tmj issues on both. She then said I needed a MORA splint that costs 3000 dollars (and my insurance covers $0). So I took this info home and decided to process it.

I then started not being able to close the right side of my jaw all the way without causing a lot of pressure/pain because it was so tight. The pressure on my right side was
Constant. I went to my appt with the new neurologist he read all the info I had filled out with my symptoms and said I had trigeminal neuralgia and to take Aptiom and let him know how it goes. He didn’t give me any other info so I of course googled TN when I got home and was terrified. I took the meds though and it has decreased my constant pain but hasn’t gotten rid of the jaw issues at all and I still have some pressure. To add to it I started having a lot of pain in my upper neck on the right side as well as tenderness behind my ear (low ear though not in the TN area which I understand is higher and a little more forward).

I still haven’t had shocking pain, although sometimes a spot will get really achy.

Any suggestions? I feel helpless because if I do have TN I want to take it seriously but do I really? How do I know? Is the fact that the medicine worked some enough to conclude that I do or would nerves hurt with tmj too? feeling so confused and alone

I have trigeminal and I had the surgery to cover the nerve three years ago. The terrible sharp stabbing pain has gone but I still have issues with my right cheek. Sometimes it feels no worse than a sinus infection but at others I can barely open my mouth to eat. I did everything you seem to be trying, the ENT,the dentist, and had teeth removed on the top of my mouth to be replaced with an upper denture. But I an still seeing a neurologist and continue to fight this crazy pain with drugs.
I can only give you the meager information I have, but I have changed my doctors twice and will again if I feel we are making no progress. We strange medical problem that shows itself in many unexpected ways and it not well known, so keep looking for that doctor who will take the time to get to know your own specific problems.

1 Like

I have had great success by seeing an Upper Cervical Chiropractor. Some people have strong feelings against Chiropractors (which I admit I had my own reservations when it was first suggested to me), but results are results. My pain was terrible and debilitating. I cannot comment on your diagnosis, but if it is TN, you may want to at least explore a UCC for treatment. It took a few treatments/adjustments, but I am now 99% pain free. None of the other methods (mostly medication) gave me any real relief and the side affects were not something I could deal with on a regular basis. Hope you are feeling better soon.

I’ve done some research online looking for a UCC cause
I’ll try anything. I am unable to come up with a chiropractor that at least advertises online that they do this treatment in my state. I’ve started to have shooting pains nothing terrible but I’ve heard they get worse. Seems crazy that I have atypical and typical :disappointed:.

Have you tried www.nucca.org ? They have a directory that you can use to search in your area. Can I ask what state you are in?

NUCCA, National Upper Cervical Chiropractic Association

Welcome to NUCCA! National Upper Cervical Chiropractic Association is a leader within the upper cervical chiropractic profession. Learn more about NUCCA.

I also recommend having some cervical manipulation with either a chiropractor or Osteopathic physician (someone who specializes in cranial sacral work). I am convinced my osteopath has helped manage my TN. I am so sorry you are in so much pain.


I see two in Indiana. Are you anywhere near Noblesville or Warsaw?

I’m about 45 min from noblesville what’s the dr name :grinning: I could manage that drive, my neurologist is near there as well

Here is the information, best wishes.

Dr. Matthew Ferris
[Dr. Matthew Ferris]
Member Level: Certification Candidate - Passed Level I
United Wellness - Simply Chiropractic
16095 Prosperity Drive
Suite 100
Noblesville, IN 46060
Office Phone: 317-■■■■■■■■
Email: ■■■■■■■■■■■■■■■■■■■mailto:■■■■■■■■■■■■■■■■■■■

Thank you so much I really appreciate your help!!!

Glad to do it. I know the pain and I wouldn’t want anyone to suffer through it if there were a solution available. I hope that you are a good candidate for the UCC treatment and that it is successful for you and you experience relief very soon.

Whilst I believe upper chiro can help some folk, for those who can’t travel, can’t afford to, or for any reason, if the neck is considered the source, which is a great starting point, there are self help options which may benefit, and possibly confirm the thought that the neck may be involved. Consult a local Physio for exercise/ therapeutic/ postural options, just don’t expect results overnight, for a problem that may have been years in the making. Look at stress in your life, e.g. the daughter and the unsuitable boyfriend, the boss who asks too much. Wind your neck in. A lot easier said than done, but with the number of folk who UCC would appear to help, maybe not a bad starting point??

just checking in to see if you were able to see the UCC. Any update?

I have very similar symptoms to yourself. I have not seen a tmj specialist but i did have a skull base MRI. I think its good to get a brain MRI to see if there is any vascular compression causing TN.
As others have stated, i think the neck could be implicated in this type of pain. I often find that when i move my neck the pain changed (“try googling the chintuck exercise and see if you do it very mildly if it effects your pain?”)
other than that the only things i would suggest is capsaicin cream and the amitriptyline (or even better, nortriptyline). That is much more useful than the anticonvulsant medication that you have been given for TN2.
Having pain similar to yours the worst thing is not knowing if its TN or not. And if it is TN, could it even become those infamous shock pains?

Good luck