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Trigeminal Neuralgia

acallen98
Posts: 4
Joined: Mar 2009

Has anyone heard of Trigeminal Neuralgia? My mom has Endometrial Papilarry Serous Cancer. She started as a stage 3b and they rediagnosed her to stage 1c. She had complete hysterectomy, 4 rounds of chemo. She had a catscan and was said to be cancer free. Yeah! She is now continuing with three month checkups.

Well, my mom has been having awful piercing pain in her jaw. Whenever she talks and eats it is so painful. First she went to the dentist and they replaced fillings. It does not appear to be anything dental. She read it could be a side effect of chemo. She has since gone to her doctor who prescribed Lyrica. It is still bothering her with little relief. She is not sure if she just needs to be on the medicine longer. She has been on it for a week and they even increased the doseage. It seems so painful for her and I hate that she is finally done with chemo and now has new battles to face.

Is this a common side effect?
Amy

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

It can be nerve damage from chemo. But with history of cancer I would consider a scan of my head also. Has she seen a neurologist? Second opinion does not hurt after having had cancer. I wonder if she needs an additional pain medication until they find out if the lyrica will work for her. She should not have to suffer so. sometimes even a week of steroids helps. Sometimes you have to be an advocate for yourself as a patient. We all walk a fine line of wanting to be advocate for ourselves and not an overly demanding patient. she is in pain and I think needs more help and this is not being demanding. Let us know how she does.

Diane

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I just started getting some mild pain in my right jaw - so I find this post very curious. I will notify my gyn-onc if it continues for another week.

Mary Ann

adan57
Posts: 4
Joined: Sep 2009

Hi,

I am not a cancer survivor, my sister and my best friend are.
However I have TN. It appeared to come out of nowhere but we later figured
out it was stress related. The pain meds dont work, they just make you drugged.

I dont know what you know about it but they call it the suicide disease and it is said to be the greatest pain known to man. I had 10 months of nothing to do but cry and research.

I learned so much, but I would rather not have had to find out.
It was the worst thing that ever happened to me. Then one morning I woke up and thought
my tooth had fallen out of my mouth. It felt like something was missing, and something was missing it was the pain.
I went on Gabapentin and I take it every day as prevention because when you are in the middle of a TN episode, NOTHING helps. I have the kind that wasnt just a shooting pain, it was a constent burning, throbbing, pain like a hot spike was being driven through my face, all the time, never stopped with episodes of the electrical shock waves. I can truly see why they call it the Suicide disease because if it comes back, and it very well could, I cant say I will stick around for that.

Tell your mom to ask for Gabapentin, it might help her, but when it goes away tell her to get on the Gabapentin for prevention. This has nothing to do with the chemo or anything like that , it is probably the stress, it can cause a compression of the trigeminal nerve.

I hope she feels better I wouldnt wish that on my very worst enemy if I had one.
If you have any questions regarding symptoms or anything like that please email me I will be more than happy to help in any way I can.
good luck

acallen98
Posts: 4
Joined: Mar 2009

Thanks for your responses. Yes, my mom has heard that this can be stress related as well. She is going to see a neurologist, but probably not for another month.

She started out with Lyrica and it gave her tremors and she was disoriented. They switched her to Tegretol (Carbamazepine). She got a rash from this, so they figured it was an allergic reaction. These both gave her some relief, but otherwise, still a very painful experience. She is now on Neurontin (Gabapentin) and Baclofen. She started yesterday, so not sure how long it takes for relief. I am glad to hear that this has been a good drug for you. I hope it helps her as well!

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

My pain is better now that I've resumed wearing my dental guard at night. I am a "teeth grinder" which reeking havoc with the nerves in the teeth and jaw. Check this out with your dentist - hopefully this might give you relief. The guards are expensive but worth it. The ones in the drug store are as effective.

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