I was relieved to read your story about Trileptal and how much better you feel. Are you still relatively pain-free now? How soon after the ear aches and tooth/jaw pain did the shocks to the face start? Your initial symptoms sound a bit like mine, except that in addition I have been having steady, constant pain on the left side of the base of my tongue and along the side of my tongue. It’s been 3.5 months of this. I’m hoping to God to this doesn’t progress to something even worse.
Your point about success stories is so logical and encouraging – people probably don’t post very often (or at all) if they’re feeling good.
Thank you Tom and everyone for the information and support. I hope you have a wonderful day.
Hi Tom
The beast as I call it invited itself into our bodies whenever it feel like it. You may have a round of pain for weeks months or even years. It comes and goes as it pleases. Each person is different. Don’t give up hope it tries to wear you down. I had suffered 25 plus years before someone finally heard me and truly listened. I had MVD 6 years ago it helped somewhat I had compression on my nerve in 5 places. I had gamma knife 1 year ago and I ended up with more pain. That I regret. I now see a neurologist at Tufts in Boston who is really trying to help me. She’s amazing doctor. We are trying injections in my head and st the spit of the craniotomy site behind my ear. A new drug just approved by FDA this September it’s calked Ajovy which ii inject into my leg once a month. Crossing my fingers. Still on a lot of meds. Don’t give up hope are stories are the same but our triggers are different. Get a good neurologist and neurosurgeon who listens to you and don’t stop looking until you know it’s the right one. God Bless
My Best
Joanne/ Tatto20
Just FYI – Ajovy is FDA approved only as preventative for migraine and the approval is less than six months old. Although studies have indicated it works with the TN somehow, there’s nothing clinical to back it up yet.
There are actually three meds in this category that have been approved the second half of this year, Avjovy, Aimovig, and Emgality. They all target calcitonin gene-related peptides which are thought to trigger incorrect pain reactions.
When I first heard about them several years ago via my migraine connections and study trials I wondered if they might work for TN/ATN as well.
Joanne, I hope this works for you! Please keep us posted on your experiences with the new medication but also please be aware there is zero clinical data for what you’re using it for, you are literally in unchart waters at this point.
Hi all i have tooth pain 10 years i pulled 4 teeth out after the last one i was getting Some relief But after few months stupid Me pút dental implant back In and the pain is back also had sinus lift now it is getting worse crying all day dentist say its not Easy to take the implants out neurolgist gave Me pills today biston for ephílepsy and wait to see But i am In súch a pain have 2 kids i do regret my decision badly Regarding the implants But did not want to be without teeth i am 36 years old But want to die Sorry just needed to say it
Stay strong, Nikola! You can get through this! Don’t let regret consume you (about the implants) – everyone has to take risks in life. Things will stabilize. Please keep us posted. Sending you wishes for the arrival of solutions very soon! Stay strong–better days will come!
also had sinus lift now it is getting worse crying all day dentist say its not Easy to take the implants out