I am 59 years old and I have had extreme jaw pain for the last 10 days. I went to the dentist last Tuesday and she could not identify tooth that was causing pain. She gave me a zpak and Tramadol to no avail. I went back to her today believing I had two abscessed teeth. She tested me and called my gp, who saw me and diagnosed me with TN. He prescribed prenidsone and carbamazepine and tylenol. I cannot sleep! 600 mg ibuprofen was helping some but he doesnt want me to take it. I live half-way between Houston and Austin. Do I find a Neurologist tomorrow or try this fegime first? If it doesn't offer relief soon, I will go crazy! Any advice is welcome.
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.
Thanks for positive support....not feeling like a normal life is ahead of me. Hopefully my pity party will end soon, and I persue finding a good neurologist.
Doc said my ears are clear. Too many symptoms not to be TN!
i believe prednisone is to reduce the nerve inflammation. Not a long term treatment, just an additional measure to get things under control.
Thanks Holly! I am looking for a neurologist. There are many to choose from in Austin, so asking for references from friends.
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.
Ask about the gamma knife treatment..its laser,not a knife. Friend had it,two weeks later dramatic difference in quality of life. Xx . there are videos of it on you tube.
They felt her tn was actually caused by dental work. She took meds for years but had to increase to max dose and besides the pain,felt very out of it from high doses of meds.
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.
In my experience, carbamazepine works similar to an antidepressant; You have to build up and maintain a certain level of it in your system for it to be effective. That level varies from person to person, and is completely ineffective for some people.
After diagnosis 10 years ago, I was taking 200 mg per day, but no more because I was following doctor's orders. I was always in pain, so I went to another neurologist. Then I found out I could take much more...the stated upper limit is usually 1200 mg a day, which I took for years. I finally looked into MVD surgery when my dosage went to 1600 a day, and I was still in pain.
My point is, you can't put too much stock into results until you've tinkered with the dosage, and taken it for a couple of weeks.
I'm so sorry for you! My ENT gave me his guess as to what I was suffering from yesterday. I cried, and cried with joy! I've been having head/face "ungodly pains" since October 28th. I've been to the ER 4 times, the walk-in clinic at my doctors office, to the dentist for xrays and finally thinking it had to be sinuses, the ENT doctor. He's sending me to see a Neurologist, but the first appointment I can get is December 15th. This is the worst pains I've ever suffered in my life. I can not make it till the 15th if this pain keeps up! But, I was given something different to try for my pain. It's called Grabapentin. I didn't figure it would do a thing for me because the dosage is so low. I can't say that it's helped, or if I'm just going through a pain-free period. The reason I'm responding to you is because this medication makes me so sleepy, I'm sure this would help you get some rest. I've been pain free for almost 30 hours, and I'm so thankful!!! I wish you the best of luck with your pain. I got IV's at the ER that helped me with the pain...and that was the only thing that worked for me. I'm not sure what it is, but it's used to treat migraines. Each IV works for about 72 hours. At first it reduces my pain to a regular bad headache, but then I can take ibuprofen and it gets rid of the rest of it. But, when the pain returns, it returns just as bad as before. The doctor at my walk in clinic said I could get a "shot" at the ER instead of the IV, so I asked for that the last time I was there. Don't waste your time on that. It did nothing for my pains. If you find you have to wait a long time to get into see the next doctor, remember the emergency room. I don't know what I would have done without that option. I hope I've helped you some.
Thanks for all your information! UTSA is about 2-3 hours for me. I will gladly drive there. Should I ask to see anyone in particular?
I had a good day yesterday! Benedryl helped me sleep and it is much easier to face this disease when fatigue is not an issue. Today was not so good. Lots of pain this morning and queasy all day, but I went from 1 Carbamazepin to 2 today....so it may have been the cause.
A highly recommended neurologist in Austin received my info yesterday, so waiting to see if she accepts me as a patient. But will definitely look into UTSA. Thanks so much!
My GP started me on 200 mg first three days,, then bumped me to 400 a day. Today was first day of 400...so I will see how it does. Haven't gotten into a neurologist yet. That may change things!
Headaches were not my issue. I never considered going to an ENT. My pain was jaw pain, upper and lower. I thought I had 2 or more abscessed teeth. I would have let the dentist pull all my teeth to stop the pain! Fortunately, my dentist had seen two other cases of TN and knew I had something else going on. She called my GP and got me in immediately! My dentist is awesome!
I will keep this suggestion in mind, but not sure I am at the stage to persue this treatment yet.
Benedryl was the answer!