Connect
← Return to Trigeminal Neuralgia*
Discussion
Comment receiving replies
Is there anyone in this particular group who has trigeminal neuralgia? I have been suffering with it for 16 years and I just about can't take the pain anymore. The pain is one-sided, as it usually is, and it covers the whole right side of my face from the chin up to my forehead. It affects my right eye when I have the pain and I can't see very good at that time. It was caused by a dentist hitting the trigeminal nerve (5th cranial nerve) while giving me a novocaine shot in my bottom right jaw. Oh, he joked and said the pain will stop after the novocaine takes affect. It took over a year for me to figure out that the excruciating pain I was having was not due to bad teeth. I have been going monthly to a pain management doctor for the past 15 years and all he could do for me was try every medicine that treats nerve pain, a whole slew of anti-epileptic drugs (didn't work), morphine, fentanyl, oxycodone, methadone, and other I can't remember. Now for the past 12 years I have been on Norco 10 mg with 325 mg of acetometaphin along with Valium, Nothing really works, so he has allowed me to take up to six Norco tablets and 3 Valiums in one day, and then use a sleeping pill (Seroquel 20mg) if the pain hasn't calmed down. I sleep a lot. There are days when I have only minimal pain - 5 to 6 on the pain scale - but the bad days are 10+++ (not making this up). Eating, talking and the wind are the triggers for this pain, so I'm somewhat stuck in the house unless it is warm and not windy. I have had 10 stellate ganglion blocks and they did nothing. So his only other idea was to sever the nerve. The trigeminal nerve gives feeling to the face, and severing the nerve is really not an option for me because he said the right side of my face might droop a bit, and also that the nerve could grow back. He said that, if it were to grow back, it would be "mad". That's the word he used ... "mad" ... because that's the term used in relation to nerves that are fiddled with. So I'm wondering if anyone else has this monster of a nervous system disorder and if anyone has had any relief. Thanks for your time.
Replies to "Is there anyone in this particular group who has trigeminal neuralgia? I have been suffering with..."
God Bless you; a Prayer has just been said on your behalf. May you have Peace, Comfort, Painfree Living, Hope, and, Faith.
Sounds dreadful, @stfnwtl89 I'm encouraged to hear that you are seeking a second opinion and will be working with a new set of doctors. Weaning of drugs is a grueling and long journey, and one that requires much patience.
I had gamma-knife procedure and am doing much better. I do still have pain on the right part of face from my forehead to my cheek. Still taking trileptal but functional. No extreme pain.
@vickylynn I appreciate the update, Vicky. I'm glad to hear that you continue to do better.
Teresa
that is great. I go to see the Neurosurgeon, on the 13th, hoping it helps me.
Connect
Yes that has been a major issue since Christmas, so now in addition to the constant pain as mentioned by several here in this forum. I've heard daggers, burning to the point feels like on fire as described by my family member. This has been 15+ years and started with a dentist. 2+ years ago a new pain mgt clinic was introduced by pcp. It started out as hopeful and for 1+ different combo's have been tried but nothing seems to be the right mix. So 6months ago the pain dr. decided to initiate a weaning and stated he as at a loss and has offered alternative medicine and a referal to a therapist. The weaning has been dreadful and the pain has intensified. I have an appt. with a new neurologist scheduled in less thank a week, this will be new hospital and new group of doctors. I did ask the pain mgt dr. if his goal was to manage pain or was it a personal mission to remove opiods and benzo's all together. Through the years there have been several procedures including gamma and cyber, now the weaning process at 68yrs old. I just wonder what is being gained.