ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: cburley1 on April 26, 2012, 09:15:10 pm
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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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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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Have you considered Elavil? I have heard it has helped some with TN.
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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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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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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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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