Trigeminal

[kgs123]

Anyone with trigeminal pain BEFORE surgery? I had a bunch of testing done on Tuesday (balance, electrodes to brain stem). Met with Neuro on Thursday. Looking to do translat in next two months.

Since Tuesday I've had increasing bouts of pain in lower jaw and ear and nothing I can do helps it feel better. The drs made me feel like it's stress induced given a new diagnosis of AN and hesitant with prescription meds to help (I forget the name of the one they said exists). Apparently my tumor is not just in the canal though, it's close to my trigeminal nerve and brain stem. Have any of you found anything OTC that helps? I've tried warm compresses, holding water in my mouth, aspirin, motrin, pacing (haven't yet pulled out hair and teeth but that's what it makes me want to do). I've contacted my nurse at the hospital and am awaiting a reply. It's truly debilitating when it hits.

Thanks for helping out the new kid on the board.

[Director]

Hi KGS,
  We had an article on TN in our June newsletter. If you are interested, I can have it sent to you.
Just email me at director@anausa.org
Best,
Allison Feldman
ANA

[rebeccadill32]

I have been battling with TN pain since January-ish. It's awful!!! It was something that would come and go and now it is a daily battle. My whole AN side is affected including a numbness/burning on the side of my tongue. I too have tried just about everything. There are some nights I come home from work and just go to bed hoping sleep will give me some relief. I have my next MRI and appt next month. I still have excellent hearing so I am still trying to hold off on surgery as long as possible. But I do completely understand what you are going through.

[ANSydney]

Rebecca, try drinking a Gatorade or two (not water) and see if your symptoms improve, get worse or stay about the same. I'd be very interested in the results.

(Water, appears to go straight through, while something with electrolytes keep fluid in you.)

[rebeccadill32]

Unfortunately I have tried that before. It had no effect on the pain. But thank you for the suggestion. I am strictly a water drinker but did think maybe something with electrolytes would be helpful because I do have the dizziness too but it did not help.

[JLR]

I had severe trigeminal pain. The AN had grown and was leaning on the root nerve. The pain was horrible.  I was on meds for a couple of months prior to surgery. I was taking Tegretol. There is a lot of misconceptions about this drug.  It really does work. I started on a low dose and slowly increased the dosage.  At some point it doesn't work as well which led me to surgery. I had the surgery last November and am still recovering. I am a very healthy grandmother and felt I would have a very easy recovery NOT. I am walking better and my balance is very improved but my facial nerve w compromised. And I am very crooked. I'm thinking about acupuncture to help my face. It's jus swollen on the right side and my right nostril is pinched as well as the infamous chin dent. Do not take surgery lightly. There are no guarantees when it comes to the facial nerve.  Stay well. Joan

[rebeccadill32]

Thank you Joan. I will need to look into tegretol. I really am not leaning towards surgery at all. I know I am not a fun person to live at times because of the pain and my family often asks if I should consider the surgery but I have heard so many times that the grass is not greener on the other side and my hearing is still really good so I'm holding out. If my doctor tells me I don't have a choice, then we will cross that bridge when we get to it. Thank you for sharing your experience.