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Author Topic: Trigeminal Neuralgia  (Read 3485 times)

cburley1

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Trigeminal Neuralgia
« on: April 26, 2012, 09:15:10 pm »
Well now I have developed Trigeminal Neuralgia...my neurologist can't say for sure, but feels maybe this is because of my swelling or growing tumor...thankfully at this time it is cycles of pain and I've learned some things that work for me to help get the pain under control, but I'm now on Tegretol for the pain, at first it was too high of a dosage & I had a bad reaction to it...so started over with smaller dose and could take another 100mg as needed ....well then it started to affect (on lowest dosage)  my blood pressure (which I have under control w/medication)...now I've had to stop taking it...blood pressure was running 155/102...I have to go back to my neurologist on May 9th to discuss options...don't want to have surgery...anyone else know of good meds for this...can't do Cymbalta or Lyrica...I've been on both of those for nerve damage & pain in my back...they both helped the pain, but made me mean & hostile....any ideas
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1.6 cm into CPA  IAC an diagnosed in Nov, 2010..gamma knife in Feb 2011...facial nerve involved, only small section going into the brain stem shows on MRI, tumor either has it pushed aside or is wrapped around it, facial spasms & twitching, hearing loss, balance off, migraines....

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CHD63

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Re: Trigeminal Neuralgia
« Reply #1 on: April 27, 2012, 07:42:00 am »
So sorry about the trigeminal neuralgia diagnosis!  I had it many years ago and it was horrible.  I was on so much Tegretol at the end, I could not function (in gradually increasing doses).  End of story ..... I had surgery to relieve the pressure at the brainstem and woke up pain-free, never to return.  All of this was years before my AN diagnosis and on the opposite side.

Only you can make the decision for treatment, but it does not sound like you have tolerated the typical meds very well. 

Many, many thoughts and prayers.

Clarice
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Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Anomar11

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Re: Trigeminal Neuralgia
« Reply #2 on: April 27, 2012, 07:42:51 pm »
Have you considered Elavil?  I have heard it has helped some with TN.
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L An diagnosed 5/08 2.0 x 1.1 x 1.3 cm.  Cyberknife Stanford Drs Chang and Gibbs Nov '08.  One yr: 2.1 x 1.4 x 1.6, Two yr: 2.2 x 1.5 x 1.8, Three yr: 1.9 x 1.5 x 1.5, Four year 1.6 x 1.1 x 1.1, Six yr: 1.4 x .7 x .9

mindyandy

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Re: Trigeminal Neuralgia
« Reply #3 on: April 28, 2012, 08:22:18 pm »
I can honestly say I know how you feel. I developed TN also. *ouch* I was on Dilantin & had a bad allergic reaction. I ended up having surgery. No more pain :-)

Mindy
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14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

cburley1

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Re: Trigeminal Neuralgia
« Reply #4 on: May 05, 2012, 05:53:12 pm »
Thanks all...the TN is on the same side as my AN and even though he can't say for absolute certain...my neurologist thinks it is from my tumor swelling...which is what I have thought all along so I asked him and he confirmed that it is probably the reason...so I don't want surgery yet because if the swelling of the tumor goes down...maybe I'll never have anymore TN...that being said..I will also not suffer for years with this, especially since I can't tolerat the medicine....but thanks for your support & suggestions
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1.6 cm into CPA  IAC an diagnosed in Nov, 2010..gamma knife in Feb 2011...facial nerve involved, only small section going into the brain stem shows on MRI, tumor either has it pushed aside or is wrapped around it, facial spasms & twitching, hearing loss, balance off, migraines....

.

mattsmum

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Re: Trigeminal Neuralgia
« Reply #5 on: May 19, 2012, 03:26:00 pm »
i had trigeminal neuralgia after my radiation. it did settle with amytriptyline and steroids - now i have numbness in that area, but that is much less troublesome. have you tried amytriptyline? it made me quite dopey but otherwise not difficult to take.
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LINAC radiosurgery july 2011 for 1.5cm tumour (uk)

cburley1

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Re: Trigeminal Neuralgia
« Reply #6 on: May 19, 2012, 08:11:34 pm »
Thanks for the suggestions...as of right now my neurologist is having me take the tegrotol as needed...so far that is working pretty good...appreciate your help
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1.6 cm into CPA  IAC an diagnosed in Nov, 2010..gamma knife in Feb 2011...facial nerve involved, only small section going into the brain stem shows on MRI, tumor either has it pushed aside or is wrapped around it, facial spasms & twitching, hearing loss, balance off, migraines....

.
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