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

Search trigeminal neuralgia on this board. Two others discussions similar just started, one under neuropathy and one under ENT. I no longer have those open to give a link.

Thanks for the input, I searched both boards and read into a few post. Nothing that matches my issues. I searched TN before I made my post. But, from what I have read, I don't have TN. It is like my trigeminal is sending out fake symptoms. ie: Severe sinus pressure and pain while my sinuses are open, etc.

I developed a Complex Migraine at 75.
I was told that people don’t develop migraines and they’re old…. my neurologist said, take ibuprofen and call me in the morning essentially.
not very satisfying. My dentist said that he treats many people with migraines and other types of severe headaches with an apparatus that you put in your mouth to prevent grinding.. he said it works for many people to be free them of medication‘s and hours in the dark with an ice pack .
so far so good for me.
It’s worth a shot to check with your dentist to see if your trigeminal nerve is inflamed.

Hi @fdouglass Sorry I wasn’t more specific last night. I looked up the links for comments by @smithakar who posted about the same time as you yesterday and has some similar symptoms. I’ve had some similar pain issues as well that I mentioned in one of these posts. We both just considered trigeminal neuralgia as the cause, but have not been diagnosed with that. No answers for you, just others with similar frustrating issues so I’ll be interested to see if more people post about it. Sometimes I do wonder if sinuses could be involved because I have a lot of allergies, but I feel there is something neurological going on as usual.

@californiazebra @fdouglass Your case reminds me of mine. I posted under a few discussion groups (ENT, Covid, Neuropathy) to see if anyone can relate. I have the same issues where my nose and teeth have constant pain. Sinus pressure/pain with clear scans. That is interesting how carbamazapine works for you to bring the pain level down if that's the case I would recommend going back to Neuro. Carbamazepine did nothing for me. I tried a trigieminal nerve block as well. The only thing that helped was 6 weeks post sinus surgery I felt better but the pain came back so the doctors are thinking its not sinus related. I can understand your pain. I wish something worked to relieve my symptoms so I can have my life back.

@fdouglass, here is the related discussion that @smithakar started:
– Pressure/pain in nose & upper teeth https://connect.mayoclinic.org/discussion/pressurepain-inside-my-nose/

You might also find some helpful hints from members in this older discussion:
- Trigeminal Neuropathy vs. Trigeminal Neuralgia: Is it the same?: https://connect.mayoclinic.org/discussion/trigeminal-neuropathy-versus-trigeminal-neuralgia/

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.

Wow @johnspirit2 that all sounds awful for you. Thank you for sharing your story. I hope by some miracle you've seen your last attack.

I have the same symptoms sometimes and my neurologist thinks I'm crazy and should see an ENT. But my sinuses feel fine! There's pain shooting THRU them!

I forgot to include my age. I am 81.