Trigeminal, but not Trigeminal Neuralgia. What is it? HELP

Periodically I have had aggravation to my trigeminal nerve. the cause is straps on my cpap mask.
Not that is your issue but it could be.

Yes!

I have had bilateral pain in my face & molar teeth for nearly 8 years!
I have been to multiple dentists & even neurologist scratching his head not able to understand why I have this chronic facial pain felt behind my nose/ top teeth & constant pressure behind my cheeks!
I do believe that I also have irritated my trigeminal nerve.

I’m so frustrated why nobody can find this problem & treat it!

I’m at the stage that when I go to bed I really couldn’t care if I don’t wake up 🤷‍♀️.

I have been dealing with what is apparently TN since Feb 2022. Initially, I had strange tingling in my scalp. Shortly after that presentation, while I was in the shower a direct hit by the water spray hit my left temple and the electric shock pain almost took me down. I then saw my PCP who prescribed 100 mg of Gabapentin morning and night. I continued to experience electric shock pain when I touched my temple but it was manageable until in March 2022 I had a horrible pain in my left temple which lasted for about 10 minutes and caused me to start screaming. My wife called our PCP and said I just took 300 mg of Gabapentin as a desperation move and was that OK. He said yes and after taking a hydrocodone and lying down I went to sleep.

I started taking gradually more Gabapentin and when I was taking 300 mg daily my symptoms subsided. A local friend who is a retired neurologist recommended that I see a surgeon at OHSU and, after a time, I was able to see a surgeon who told me that the reduction in my symptoms was not due to the Gabapentin but that TN symptoms come and go and that, within a year, I would have another episode but to go ahead and experiment with various dosages to see if there would be any change in symptoms. I reduced my dosage to 100 mg each morning and evening and my symptoms returned. I went back to 200 mg morning and night and they disappeared. In February 2023 I started getting the electric shock type pain in my left temple again.

I have since had a CT brain scan and an MRI brain scan with and without contrast. There was nothing amiss anywhere which was good but did nothing to explain my problems. However, for the moment, the pain has changed into a mild dull headache over my left eyebrow, a dull pain behind my left eye and s sharper pain in my left eyebrow when I occasionally raise it. One doctor, an ENT, said that my symptoms somewhat resembled cluster headaches. A neurologist said that it sounds somewhat like a migraine issue and I have had auras without pain for years. Just before the Feb 2023 episode started, I had a cluster of auras.

I have also had an occipital nerve block to see if that had any effect on my symptoms and it did not.

I only write all of this to illustrate how all of my problems seem to show how difficult it is to identify which nerves are the culprits in TN type pain. In my case it is clear that the opthalmic nerve is involved but what is causing it to misbehave? Hopefully, this will help others with TN type pain realize how tricky it is to make a diagnosis. I haven't given up and I have found that I can get real relief from Gabapentin but no physician I have seen pretends to know what is really going on in this very complex cluster of nerves.

Bill Anderson
I posted how I got rid of TN in the covid 19 and TN post by ??

Hi @kenweinberg, Welcome to Connect. I've had some aggravation from the CPAP mask straps also but not really pain. That is definitely something to think about if you use a CPAP. I did find some padded CPAP headgear strap covers that made it a little more comfortable. I think most of my issue was having my mask too tight.

Have you been diagnosed with Trigeminal Neuralgia?

Trigeminal neuralgia is episodic and comes and goes. In the past it would go away and I would be relieved but it would come back again. Some people have had reactions to the drugs so they have had to change to something different. There is a TN group on Facebook that I have found helpful. I record my episodes on my calendar so that I can accurately report back to my neurologist. Right now I’m trying accupuncture with my chiropractor. I’m slowly increasing my medication. The Mayo Clinic site has some information. Best of luck and please update us on how you are feeling.