So I got in pretty quick to a Neurologist a little over a week ago. He ordered an MRI which came back negative and some blood work which I guess he will talk to me about at my next appointment and started me on a low dose of Oxcarbazepin(150mg) which I think is Trileptal. I asked him if I could have something for the pain and he say "no, that is not a good way to treat it". I have only seen an urgent care Dr. (who tried to give me some pain med. and I said no, oh how I wish I had said yes) and the neurologist. Before this started I had not been to a Dr. in four years. I wish I had asked a lot more questions like how many patients he has with TN but I was very emotional and forgot what to ask. He also didn't say if I had Type I or II. But I'm pretty sure it's type II cause it is constant. I really feel like I am going to go crazy if I feel this pain much longer. About 3 days ago I thought the medicine had kicked in because I didn't have any pain, so I spent the day outside working in the yard and had the farrier come to do my horses feet and I was out 'til after dark. I could feel the cold breeze bugging my trigger point on the lower left of my jaw/cheek, but it was not painful so I kept going thinking the medicine was working. The next day the pain started, and not just in my lower jaw and teeth, but in my ear and cheekbone and I felt like it was affecting my eye. Then I tried to go to a hockey game with my family like I always do. The pain was so bad I couldn't concentrate on anything, I was having waves of nausea and lightheadedness. I was afraid I was going to pass out. Has anyone had this with their TN? I feel like I can't handle it, yet there is no way to escape it. I used to feel some relief from Tylenol and ibuprofen but they don't seem to even take the edge off anymore. There is a neurologist on the list that is a little farther away in Dallas, should I change my Neurologist? or is it normal to not have pain medicine other than Tylenol and Motrin?
Hi Shawna, oxcarbamazepine is a cousin to Tegretol, it is trileptal and can be used for TN as it is also an anticonvulsant. Although I’m not a doctor I believe it should be given in small doses to start and increased slowly to build up in your system.
Unfortunately there are no pain meds that touch TN pain, some pain meds are given later on to supplement Any pain you might still be having or breakthrough pain.
Did your doctor give you any direction on how to increase the trileptal ?
If not, you need to speak with him again and get that direction.
At my initial diagnosis 10 yrs ago I was never told TN1 or 2, I was told TN.
To be honest I didn’t care, I just wanted pain relief. Based on your symptoms and pain presentation you can determine what you have, go to the face pain info tab to find out. You can always write down questions now for your next visit with neuro. It’s overwhelming at first, I too never thought to ask questions at first visit.
Initially having pan relief is a good sign, but usually we need to increase the med and get to a therapeutic level.
I highly recommend calling him back to increase meds, if you’re not happy with second visit look for a 2nd opinion!
Best of luck to you, ((( hugs )))
Thanks, I was really feeling like I just couldn’t handle it anymore so eventhough I thought he might feel like I was bugging him, I called and he moved my appointment to Monday.
I’m so pleased for you! Write down all your questions! Good luck! Oh and make sure you have a plan with him for when your meds aren’t working to cover the pain! Ask him what you should do!
Thinking of you,mimi
narcotics don't usually work well for this pain. From my experience, I went on vicodin then percocet and it didn't touch the pain. The only thing that took the pain away completely was Trileptal.
I think it's typical for Neuro's not to give out pain pills because they really don't work for TN. There are exceptions though.
To answer your question...yes...when the pain is constant and intense I have had nausea, vomiting and lightheadedness.These things plus my blood pressure shooting up are what made the ER doctor take me seriously when I told him the IV Morphine was not touching the pain. Sorry you are having such trouble. Try moist heat. it helps me alot. Also,
I keep Percocets on hand. Although they do not take the pain away... after a day of constant pain they help take the edge off and help me get a good nights rest to meet the next day.
Hi shawna,
The use of narcotics is contervesal with TN. In some patients this class of medications does nothing to help the pain, and in other patients these medication can help in a big way. Most neuro’s are not going to give out narcatics as first line drug for tn, and in fact you could most say most any type of doctor. It may take you a bit to tilter up to the right dose of your current medication till the pain is under control pretty darn well, and you may still have bouts of pain every once in awhile. Also it might take a cocktail of different drugs to have the pain more under control.
With your last question, yes I can get nause, shaky, almong other things when the pain gets way out of control. If the pain gets too bad go back to the er. I hope the pain will lessen up on you soon. Take care
Thanks so much, I have been reading more about pain meds here on this site, great info. I wanted relief so bad but I can see that most likely the pain meds won’t help. I think I will see if I can get something to help me sleep though. Not getting much rest at all and lying down seems to make it worse. My blood pressure has been high at each of my doctors appointment and I have always had good blood pressure before.
Hi, The way you are describing your TN is a lot like my Daughter does hers. She says she feels like she is going crazy as no one understands why she can't do what she used to do. She tries and then she is down for days with ice packs and pain meds, which help a little but she just has to lay around and her kids are tired of seeing her on the sofa with the ice packs. She has had this for 5 years. She has been to at least 26 doctors and her best doctor is he Pain Management Doctor. He wants to find a way to stop the pain and he does keep trying different meds. Many, many of the. She had MVD surgery 3 1/2 years ago and it changed the pain but did not stop the pain. She says her pain is like having a "dry socket" from having a tooth pulled and it won't stop even with pain meds. She is crying out for help also.
Thanks Kc Dancer, I actually have that on my list, got it from one of your replies to someone else. I've been reading and learning a lot! It really helps me to have hope.