Trigeminal numbness

Anyone with TN2 that has found relief from the constant pain? Thank you.

Hi @brian29
I chased my TGN down for relief. Without going into the odessy, I can tell you that the pain started with a trip to the dentist, which 99.99% of neurologists say is not a cause. If they would ever let me finish my sentence. I would say catalyst not cause. So, by the time the work was undone the arduous journey had made the condition permanent. I went to an overprice dentist who said he could relieve of the pain. Yes, and no. He removed and redid the crown that was the catalyst, but I had more issues as a result of the dentist. Anyway this led me to a PT that said that I was so bad that nothing could be done (the positive outlook was overwhelming) another pt at the practice recommended a cranio sacral pt. So good! Gotta go will finish later. Ivig begins...

IVig done Hooray. As IVig causes headaches for those not prone to migraines, it just becomes exponentially worse if you have migraines and Trigeminal Neuralgia. It is so worth the extra agony. I will see a cranio sacral therapist in hour.
With the cranio sacral therapy. When I have a reaction to light, sound or smell, I know that the TN will calm down faster. I have doing the therapy for 10 years.

Thank you, much appreciated

Hello. I was diagnosed with intractable facial nerve pain in April 2022. My pcp prescribed oxcarbazepine. When that didn’t work, he referred me to a neurologist who prescribed gabapentin. That helped occasionally. Then the neurologist referred me to a neurosurgeon who performed a radio frequency ablation. At first I first, I felt great, then I started to have all of this swelling on the left side of my forehead and around my eye socket. Sometimes the swelling is excruciating and I had to go to the ER to relieve it. Anyway, there are times when I start to give up and lose hope. Right now I’m just waiting to see what happens. There are times when I feel like I’m in prison for a crime I didn’t commit.

I am so sorry for what your going through. I share your feeling of being in prison for a crime I did not commit. Last night I got 2 hours sleep, and then my neuropathy in my sinuses and ears and a few other places flared up. I was tossing and turning until 3 this afternoon. I hope you find some answers and relief very soon!

I have had trigeminal neuralgia since 2006, when I was initially diagnosed (that took a wee bit of time). I was given Trileptal, which worked. I took myself off of it for various reasons. I learned what triggers it for me and had lots of pain with no relief. In 2011, I was recommended to a cranial sacral physical therapist and very fortunately for me the symptoms diminished. The relief did not happen overnight. But close to it. I had more TGN issues in 2016 and started Baclofen. The treatment and results will be different for everyone. Happy, less inflammed nerves do not communicate displeasure, the same goes with Neuropathy. On Monday I waited 3 hours in an oral surgeon's office (there was an emergency) my head was horendous just from the air freshners! My face did calm down, eventually, considering I had a procedure, this is great. I no longer live in fear of my TGN flaring, and that is half the battle. I also have IGg issues but the doctor thinks chemotherapy is the cause of that.

I had one severe attack of TGN a few years ago. My Dr and dentist thought it was TMJ and I paid big money for a dental appliance which did no good. The pain makes a person desperate. I realized finally that it could be my sleeping position that triggered it. I was mostly sleeping on my stomach. I stopped that and the pain went away after a few weeks. Never has returned. I hope you can find relief.

This sounds so similar to what I've been dealing with since February of 2020: idiopathic tingling/numbness, and sometimes a sort of sore or tight sensation, over my right cheek and the right half of my tongue. I've had two MRIs at this point, bloodwork, and a CT scan of neck/head, and still have no idea what's going on. I also opted to not take gabapentin since it's not painful, just, unsettling and strange. Have you made any progress in your search for answers?

Welcome @janetleela, I'm not sure if @katiec is following Connect since she has only posted once which was in 2021. @jfn, @sdgoddard10 and others may have some suggestions or experience to share with you.

It sounds like nothing was learned with all of the testing you have had so far. Have you thought about seeing a neurologist or other specialist?