Diagnosed today with Trigeminal Neuralgia

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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.  

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  • Posted

    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.

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  • Posted

    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.

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  • Posted

    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.

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  • Posted

    "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.

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    • Posted

      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.
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  • Posted

    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.

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  • Posted

    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.
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  • Posted

    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.

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    • Posted

      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!

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    • Posted

      I am seeing Dr. Francisco Gonzales-Scarano, or Dr. Gonzales (in short). ,You will never have to wait for your appointment. They are timed precisely. This group is on a floor of its own (4th floor in the medical center.) It is streamlined perfectly. The whole experience is less than one hour. They really aren't interested in your past experiences with other doctors and tend to start fresh with each patient. You are seen for approximately 25 minutes then you are charted and then ready to go back home. If you need an MRI or lab work, it is done in the same building. It's all very quiet and peaceful and conducive to anyone with a neurological experience. There are other neurologist in this group. They all confirm with each other about a plan of action. They are not surgery driven. The gamma knife procedure has been offered to me as a last result if the medications start to fail after a few years. The good news is that I'm not afraid anymore. I feel very comfortable with what is going on with me because I have been informed now. Knowledge equals power. Good luck and I wish you the very best. Keep in touch if you have any other questions. I've been running up and down the flagpole with TN and I believe each one of us has something similar in common although we are individuals and should be treated as such. No two cases are exactly alike. Stay strong.

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    • Posted

      I called UTSA today.  Their first appointments with patients with TN are June or July.  I will see a neuroloigst in Austin in two weeks and then get on the list to be seen at UTSA.  I also have a couple of connections in Houston that I am exploring and since I am halfway between Houston and Austin, I can easily go either way.  I just want to find the right doc for me.  

      Today was my first pain free day in 13 days!  I am hoping it means the drugs are working.  

      BTW...I find it surpisingly ironic that we are both from central/south Texas with the same disorder on the same website.

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    • Posted

      I'm sorry that they are so booked up. See if anyone in that group can see you.,Stay on the appointment list. You will appreciate that this neurology department travels extensively for research, answers, and are teaching professors of neurology. My neurologist usually sees patients on the first Tuesday of the month.

      Also: When you are are seeing or interviewing a neurologist, please ask a lot of questions. First: How MANY Trigeminal patients have you treated in the past, and how many are you currently treating for TN. Have them give you several options if Gabapenten and Trileptal don't work for you. Not 2 options.

      Second: While in waiting room, Take notes on appointment waiting time, obvious double-bookings and more importantly, the front desk personnel. They are the gates of communication between you, your pharmacy, nurse and Dr. should you have questions or needs. We deserve better than the norm. Register with TNAssociation , Facial Pain Assoc., and other groups. I find The UK and Ireland are more progressive in my opinion. Surgery should be an absolute last resort. Stay in touch. Melissa

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