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Use of Tegretol for treating Trigeminal Neuralgia
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Use of Tegretol for treating Trigeminal Neuralgia

My mother was recently put on Tegretol to treat the pain associated with what the doctors believe to be Trigeminal Neuralgia.  
Although they have not said so I believe that she may have Atypical Tigeminal Neuralgia as she experiences constant pain on the right side of her face as well as the occassional shooting "bolts" of pain.  
She has been on the Tegretol 600mg/day for approx. 2 weeks - she is also on Oxycodone (given to her by her primary care physician - not the neurologist).  
Although she has had some relief from the shooting pain she still has significant constant pain.
My two questions are:
   1.  What is the typical length of time before we would expect to see significant pain relief with the Tegretol?  Is Tegretol even effective with Atypical Trigeminal Neuralgia?
   2.  In your opinion do you think the use of oxycodone is valid while she waits to receive the full benefit from the Tegretol (the neurologist says it won't help the pain - but my mother sees a difference in the pain level when she uses it versus when she doesn't)?
Thanks for your help!
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Avatar_n_tn
1.Also depends on dose. Should be slowly titrated upwards for adequate pain relief using that as your guide as well as amount of side effects. I would give it a couple more weeks and talk to your doctor about how high they want to go. Your mom still has some room on it.  Tegretol is usually pretty good for nerve pain in general.  Other alternatives to consider for nerve pain: neurontin, trileptal, and elavil which all have a better side effect profile.

2.I'm always reluctant to prescribe narcotics for chronic pain syndromes due to the addictive potential.  It's better to max out on the non-addictive meds such as the ones mentioned above.  However, if your mother is simply using it as a bridge until the medication to be used longterm kicks in, then this may be ok.  She just has to be careful and if there is a suspicion of addiction, she should seek help with pain management/counseling. Good luck
9 Comments
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Avatar_n_tn
Hi Woodsy,
I'm a physiotherapist in Liverpool UK.
Pains to the head/face are frequently attributed incorrectly to trigeminal neuralgia.  Pain in this area often originates from the neck at C3 or C4 levels.  The nerve roots can be irritated by degeneration such as spondylosis or osteo-arthritis.  Make sure that your mother has been correctly diagnosed (but bear in mind it ain't easy sometimes!).

www.glennisjones-physio.co.uk
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Avatar_n_tn
I found that Tegretol helped immensely with my Trigeminal Neuralgia and I did not need any other pain relief. I needed 600mg per day and it took about 3 weeks to be effective. I now find that 300mg per day keeps it away.Hope your Mum is as lucky as me.
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Avatar_n_tn
I have recently been put on Topomax (topamax) for Trigeminal Neuralgia after Amitryptiline was not effective and I had an allergic reaction to Trileptal.  Doctor thinks I may have atypical trigeminal neuralgia.  I have a constant aching in my upper left teeth and gum line.  Blood work also recently showed positive for an autoimmune disorder, possible sjorgen's syndrome.  I often times have a very sore palate and some blistering.  I have been to several doctors and noone seems to know what to do.  Any suggestions?
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Avatar_n_tn
Hello everyone I anew to the board.... and thank god I have found possibly some questions I can ask my physcian.

First of all, I was diagnoised with an aneurysm on March 11, 2002 I had surgery Aprill 11,2002. Since this time I have had excrutiating pain on my right side of my nostril area and I have had three root canals my palate is sore my gum line arounf my tooth is very sensitive I have had all kinds of CT scan from endodontis, ENT specialist and from ER on the brain and no one can find anything wrong is there a possiblity of Trigeminal Neuralgia if so how can I be diagnosed or what test should I suggest to my physcian.



Honey1
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Avatar_n_tn
I was recently diagnosed as having Tigeminal Neuralgia.

I've had this disorder for 8 months and none of the medications like neurontin , tegretol , even narcotic painkillers have helped me.


is it illegal to be treated for pain in america?

i'm suffering and on the edge of suicide and my family isnn't taking me seriously. they just say 'oh two asprin a day is all you should need'  i've been out of work and i've lost my social life due to this terrible disorder.  no one should have to suffer through it and my neurologist just tells me 'continue taking neurontin its not had time to settle in' and ive been on neurontin for 4 months now and viox. and lortabs.  Going through different emergency rooms and all they do is give me a bottle of weak pain medicine




i want to die so bad right now
i went to a emergency room recently and waited 8 hours. sufffering IN the emergency room.

i shouldnt have to suffer should I?

my doctors are NEVER available  they just thinki m a drug seeker.




it even hurts me to type this message.



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Avatar_n_tn
I have been on 2400 mg Neurotin for 6 months. The pain was from the side of my nose through the eye to the scalp. HORRIBLE. It rarely affects my eye now, but the pain is now in my jaw. I've noticed that stress addes to the attacks. I'm thinking about having the Gamma Knife proceedure done. I've been told that it is the way to go when medication doesn't work. Has anyone had this done?

I pray for the day to come when there is relief for all with Trigeminal Neuralgia.
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Avatar_n_tn
Have you asked your Neurologist about the GAMMA KNIFE proceedure? It is out-patient and has no incision. This is usually done when medication fail to work.
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Avatar_n_tn
Ask your Neurologist about the GAMMA KNIFE proceedure. It is out patient and no incision.
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