Hi, my name is Jennifer and I was diagnosed with TN a month ago. It started back in January a few weeks before I had back surgery. I thought I was grinding my teeth at night from the stress of the upcoming surgery, but my dentist said everything looked good.
The pain went away after back surgery so I didn't think much of it and figured it was stress from the surgery.
But the pain came back a little over a month ago and with a vengence. The doctor started me on 100mg of Tegretol twice a day and upped it to 200mg twice a day with it not helping at all. Yesterday I was down to sipping protein shakes and water since I couldn't eat. I called the doctor back and he changed me to Oxcarbazepine, 300mg twice a day. So far, it is not helping eighter. I couldn't eat runny mashed potatoes without massive amounts of pain. I make myself deal with the pain when I brush my teeth since I know it is something I need to do every day.
I'm curious if I need to wait the week before I see the doctor next Monday to see if this new drug will work or if it supposed to be something that works right away.
I feel like I'm losing my mind, all I do is cry because I can't do simple things like eating or brushing my teeth. I feel for my husband because he wants to help and there is nothing he can do. I am angry that I have something new wrong with me after just recovering from back surgery.
Sorry to ramble on, just not sure where else to go that would have people who understand what I am going through.
Hi Jennifer. I am just coming out of another bout of pain and this time it took 2 weeks for the meds to kick in. I also had to increase the dose of both meds, gabapentin and amytriptyline. Pain is exhausting - try and find something, anything that can make you feel productive and give your mind a break... and yes we understand what you are going through, glad you checked in.
Hi. Please go and let it looked at immediately by neuroligist. Make an MRI to see with what you are dealing with. The pain makes you crazy I know. I smacked myself blue because I couldn’t handle it anymore. Don’t give up. If you feel the doctor doesn’t wanna listen to you, change doctor. I am on lyrica but it took 2 weeks till I felt effect. And even noecit is adjusting all the time. You sound very tired. Don’t give up. Givevyour husband things how he can help. Even though it doesn’t make the pain go away, it makes him feel not useless: making dishes, a tea, bringing you a blanket… Small things. It will help you too even just emotional.
I'm sorry you are going through this. Most of the drugs used for TN take awhile to start working. Plus you have to teeter up slowly. I am on Amitriptyline and it takes two to three weeks for a dosage to fully kick in for me.
As the other two people said above...keep looking for help until you find it. The pain is like nothing else. It is so exhausting and isolating. I have been there a few times :( I hope you can find relief quickly.
Thank you so much for the sweet replies. Yesterday went better as the day went on, then this morning was one of the worst attacks, couldn't even lift my head to get out of bed. I am going to see a therapist for needling today and praying she can give me a little relief until I go back to the doctor next Monday.
We wish you all good luck. And keep us updated!