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Old 06-04-2011, 01:22 PM   #1
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Diagnosed with TN, on meds, still in pain...

Hi all,

I was diagnosed back in 2005 with TN (had a cavity filled that year, which caused the TN, tried a root canal which didn't help). The pain is all on the right side of my face and goes between mild to very bad at times

I was originally prescribed Klonopin .5 mg 3 times a day which was doing a very good job of eliminating the pain almost entirely (still had some from time to time). I saw a Dr last year who added Gabapentin 900 mg 3 times a day in hopes of eliminating that pain which didn't work. Since then the pain has only gotten worse to the point where it is pretty much constant now, and when it randomly flares up (hours at a time) it is VERY bad. He moved the Gabapentin up to 1800 mg 3 times a day (the max dosage he will give) and has started me on Oxcarbazepine, 150 mg tablets, started me at 2 per day, now 4 per day (2x twice a day).

All this medication and I am still in great pain.

Any ideas? Are there non-medication options?

I am unsure as to whether the Gabapentin is "cancelling out" the Klonopin, I dont think this is likely because he wouldnt have given it to me otherwise, but the timelines do sort of match up between adding Gabapentin and getting more pain...

So that is where I stand, I am at the point of considering surgical or non-traditional options even though these seem scary to me...

Any responses are helpful...

 
Old 06-04-2011, 06:40 PM   #2
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Re: Diagnosed with TN, on meds, still in pain...

My sister had vascular decompression surgery for hers and it worked beautifully. She had it at Presbyterian Hospital at the University of Pittsburgh where the procedure was invented. I strongly recommend researching this option. The facial pain association has a list of approved neurosurgeons if you can't travel to Pittsburgh.

Last edited by Titchou; 06-04-2011 at 06:40 PM.

 
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Old 06-07-2011, 10:51 AM   #3
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Re: Diagnosed with TN, on meds, still in pain...

Thank you for the response.

Update: I saw a different neurologist today. She suggested possibly upping the Klonopin dosage since that is the only drug that definitely helped me, and lowering the Gabapentin and possibly lowering the Oxcarbazepine if that isnt helping.

As a surgical option, which is looking more and more possible as the medications fail, I am a a little scared of the decompression surgery, even if it has a high rate of success...I think I would try a nerve block first, which seems relatively safe...

 
Old 06-23-2011, 12:18 PM   #4
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Re: Diagnosed with TN, on meds, still in pain...

update:

Pain has been mostly controlled over the past week and a half...Still on .5 mg Klonopin x 3, 1800 mg Gabapentin x 3, and 300 mg Oxcarpazepine x 3 per day. tried upping the Oxcarbazepine to 450 mg but felt drowsy so went down...Also tried reducing it to 150 mg, or eliminating 300 mg of the Gabapentin per day, both both resulted in increased pain...So continuing on this dosage for now...Will be seeing a doctor on a nerve block consult next week. Pain seems to be OK for now...Fingers crossed...

 
Old 06-24-2011, 11:17 AM   #5
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Re: Diagnosed with TN, on meds, still in pain...

One thing to watch with the nerve block, botox, etc is whether or not that will preclude you from having the vdp surgery. Some of these do. I remember when my sister went for her eval at Pitt, they had something like 800 clients but only about 300 were candidates for the vdp procedure and mostly due to having already done things that made it impossible to the vdp. Some, of course, weren't because of age or other health issues but many were because they had undergone these other procedures. Just a word of caution about closing any doors that can't be reopened.

Glad you are doing better though.

Last edited by Titchou; 06-24-2011 at 11:18 AM.

 
Old 06-26-2011, 02:21 PM   #6
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Re: Diagnosed with TN, on meds, still in pain...

Thx for the advice

 
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