I was diagnosed with trigeminal neuralgia in December after having two root canals and one of those teeth pulled. I wanted the other tooth pulled but the dentist wouldn’t do it. I ended up in the emergency room finally. I have MS and they found a lesion on my trigeminal nerve area. I thought that they might at that point as I had been researching to find out what was going on because I had never been in so much pain in my life. I’ve know chronic pain too. I’ve had endometriosis since I was thirteen years old, migraines, herniated discs but I’ve never described a pain as a 10. I was saving it I guess. In the ER, when I finally went and was just shaking from the pain I gave them a 10. They gave me Dilaudid and Fentanyl which did nothing because ofc its neuropathic pain. They gave me tegretol and said that I could stay I could keep trying the fentanyl but why? So I went home.
I was back three days later. This is time they made me stay. My blood pressure and blood tests were wonky. I was in the hospital for eight days. They started me on baclofen and tramadol and upped my tegretol and gabapentin. After about the eight day of being on tegretol I finally went down from a 10 to an 8. It was not heaven but it was great. I felt like I could breathe. From that point my pain would go from a 4-8.
Oh yes, this is where I am so confused. I read on here over and over where people say they are screaming with the pain. Maybe it’s where my pain is. Mine is in my upper right jaw. But I can barely talk when I’m in pain. Most days I don’t say a word until my daughter comes home from school and I save all my energy for that. How do people scream? It doesn’t seem possible to me. Maybe someone can explain that to me.
They took me off the tramadol and put me on methadone. Who knew? It works for neuropathic pain. But five days later after a blood test they made me come back to the hospital because the tegretol was lowering my sodium level. Omg, I didn’t want to go back. But my PCP convinced me she said I could have a seizure. They lowered my tegretol even though I begged them not to.
I got out five days later and saw a pain doctor who scheduled a trigeminal nerve block. I’m not sure what worked, what happened but three weeks later I had six days of absolutely no pain. It was heaven. I thought I was in remission. Like a remission that would last. But it came back.
And then ten days ago then level 10 pain came back. Oh, I forgot to say I have constant atypical TN because of the MS so I have a constant aching pain and then for me a stabbing burning screwdriver that goes deep into my gums. Right now the attacks are so often it feels constant.
I am beyond miserable. I haven’t left my house except doctors appointments since December. I have a 7 year old child. I live with my mom. My ex and I split time with her. I can’t drive because of the low sodium from the tegretol. I can’t talk on the phone because I can’t talk most of the time.
But right now I can’t hardly make it past this next minute. I don’t know how I’m going to do this. I have another trigeminal nerve block schedule March 12th. I’ve had Spg blocks and stellate ganglion blocks every week. I’m on so much medication you could kill a horse. I know about MVD. I’ve seen a neurosurgeon. I waiting for a medical marijuana card. I’m doing everything I can possibly do.
But I’m telling you I honestly don’t know how to survive this the next hour, much less the next day or the next week or the next month. How?