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Diagnosed today with Trigeminal Neuralgia

Posted , 13 users are following.

ellie1857
ellie1857

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.  

2 likes, 29 replies

29 Replies

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  • clint71
    clint71 ellie1857

    Posted

    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.

    • ellie1857
      ellie1857 clint71

      Posted

      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!

  • sandy5221948
    sandy5221948 ellie1857

    Posted

    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.     

    • ellie1857
      ellie1857 sandy5221948

      Posted

      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!
    • holly35803
      holly35803 ellie1857

      Posted

      I,too, was very lucky when my TN first appeared.I saw an emergency dentist who took dental x-rays, but then stopped and listened to my story. As I described the pain travelling from the dental area up to my eye socket,nasal passages, then back to my teeth, the dentist said, "You need a neurologist." Turns out some people DO get teeth pulled before they get a proper diagnosis.

  • lee12629
    lee12629 ellie1857

    Posted

    Hi again,high doses of some of these meds greatly reduce your quality of life as my friend found out..and she still had pain,the gamma knife i think was her miracle,i now have my happy friend back,why suffer so needlessly,this could get rid of it. Keep an open mind,shes so happy she had it.
  • tom14212
    tom14212 ellie1857

    Posted

    I just had MVD surgery Nov. 22 2016 by dr ray sekula at UPMC in pittsburgh and I am totally pain free.  I have had TN for 2 years and it was under control with tegratol.  It came back this past Father's Day with way too much pain.. I had to  do something. I went to 2 specialist and they recommended the surgery after the mri.  This was a miracle for me and my family. I was in the hospital for 1 night.  I had surgery headaches, but they are gone. I was back to work in 5 days. And I am ready to go..

    ifi can help please reach out to me 

    Tom

    • ellie1857
      ellie1857 tom14212

      Posted

      My husband is from Pittsburgh!  Thanks for the info.  It's nice to know there are options that work.

  • lee12629
    lee12629 ellie1857

    Posted

    When i read u had to wait til june or july..wow,long time. We live in wi,university of Madison medical center,took like 2 months for testing and procedure .where my friends found so much help. she got in within 3 weeks.
    • Mcraig1962
      Mcraig1962 lee12629

      Posted

      My family doctor pushed for an appointment for me at UTSA. You might have to have your GP make that phone call for you to let them know that this is urgent. Good luck my friend
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