Diagnosed today with Trigeminal Neuralgia

Hello Ellie,

I was diagnosed with TN a year ago, and I took a similar route. I went to the dentist first who referred me to a neurologist. I was given carbamazepine, and it took a long time for the drug to *fully* kick in. I don't know if other people have a similar experience with the drug. You are probably on the right drug to start with. If you do not have a neurologist now you should find one for ongoing care. Because TN is rare your GP will not have as much knowledge as a neurologist. I hope you feel better soon.

If carbamazepine does not quickly take away the pain then it may not be TN.  That is one of the "tests" to confirm TN.  My electric shock like pains went away within 2 hours of starting the carbamzepine....they just did not stay away.  Prednisone will keep you awake and feeling miserable.  I am not sure why your doctor would give you tylenol.  You need to either go back to your family doctor or if you have quick access to a neurologist that would be great.  Good luck.  And also based on my personal experience with TN....there are many variables to the pain and treatment results.

i know this is gonna sound crazy but have you had your ears checked? sometimes your ears hurt so badly it feels lik it's a jaw problem. the tegretol worked like a cham for me. i can believe it took away the pain whereas evey painkiller known to man did nothing.

"Been there done that" as the saying goes. I am now on carbamazepine, 200mg 3 times a day. It's working well. The dosage can always be adjusted depending on your pain level and frequency. I see a neurologist who specializes in pain management. It helps that she also has TN so she is very helpful and knowledgeable. She has been a great help. Best of luck to you. There is help.

Hi Ellie.

It is probably the prednisone that is preventing you from sleeping.  Usually, prednisone is just for short periods.  So, you might not be on it forever.  You can ask the prescribing  doctor if you can reduce the dosage a bit and see if it helps with the sleep.  It didn't interfere with my sleep when I was on it and it made me nice and buzzy during the day and helped me get things done.  Everyone is different, so hang in there.

Welcome to our world. Please don't go crazy. I totally understand what you are going through and that it is a mostly mysterious field and out of most doctors and neurologists scope. I'm from a small city where three neurologist misdiagnosed me and pummeled me with various medications and treatments that failed. I felt warehoused in bed from narcotics from a pain clinic where I was offered methadone upon walking in without exam. I promptly denied and walked away. Please call University of Texas San Antonio neurological Department. They will see you. We drive two and a half hours to get there. Well worth the trip . They have extensive knowledge about trigeminal neuralgia and how to treat it properly with the right medications. I felt like the heavens had opened and cried with joy on my way back after my first visit. Those were very happy tears! I'm surprised to learn that you have not been to put on Tegretol or Trileptal. If you are a small framed person, I believe that you should start with Trileptal first. It won't give you the punch in the stomach. Now mind you, you will be nauseous at the beginning but it will work for you if you are truly suffering from TN, it WILL work. Just hang in there. I use mine in conjunction with the Gabapentin. This combination has subsided 200 episodes per day to about 6 or 7. I also take Xanax for the anxiety and the fearful anticipation that is consistent with this disorder. I wish you will keep us updated on your progress. Following this group has made me feel that I am not alone. This disease will separate you from your former life as you knew it. It is very difficult to describe what you are going through to your loved ones and Friends. Be prepared. I highly recommend that you see a therapist either by Skyping or talking. Most of us don't like to get out very often, so this is understandable. Wear sunglasses in fluorescent lighting. They tend to over stimulate your brain. I also about avoid large crowds at the mall as I am again "visually" over-stimulated. We pray for your speedy attention to your situation.