Author Topic: Trigeminal nerve problems and Gabapentin  (Read 17567 times)

Sue

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Trigeminal nerve problems and Gabapentin
« on: October 31, 2012, 05:09:23 pm »
I haven't been on in a while.  Hello!

I have had some issues with the nerves after my GK.  It wasn't all that noticeable until I had some dental things done, and then the nerves began to act up on my AN side (of course).  I finally saw a neurologist and we just had a nice discussion on nerves today.  She said I could try Gabapentin to try to lessen the occurrence of nerve pain.  My pain is on occasion uncomfortable but manageable, but I got the prescription today anyway.  After reading the warning labels and talking with the pharmacist, I'm a little concerned about taking it.  I have the minimum dosage, and that makes me feel a little better about trying it.  I just want to know if anyone else has taken this medicine and how you did on it.  Obviously, I can try it and stop taking it if I am not comfortable with the side effects.  Always nice to talk to someone who has experience with this drug, however. 

Thank you.. :)
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

volleymom

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Re: Trigeminal nerve problems and Gabapentin
« Reply #1 on: November 01, 2012, 02:33:21 am »
Hi Sue,
I am in Central Oregon and had my surgery almost 3 years ago.  Before surgery, I wasn't having pain, but facial and tongue numbness.  The neurologist had me take Gabapentin, starting out at 100 mg.  After a few months, my dosage was gradually increased to 300 mg several times a day.  The gradual increase in dosage made me able to keep working full time without problems.  It causes drowsiness, the only side effect that I remember noticing.  After surgery they weaned me off of it quickly.  I think it is safe to try, I was reluctant at first, wondering if this was something that I might need to take forever.

I still have a few pills left, I use them when I want an extra good night of sleep.

Kathy
9mm X 16mm diagonsed in August 2009.  Retrosigmoid Nov, 2009 at OHSU in Portland, OR.
post-op had some facial nerve weakness, nearly resolved. Mild tinnitus. Left sided deafness.

mindyandy

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Re: Trigeminal nerve problems and Gabapentin
« Reply #2 on: November 01, 2012, 10:53:02 am »
Hi Sue. Longtime no see  ;D
I had CK done Jan 2008. Last year about this time I started to have trigeminal pain. It was awful. I had surgery last March. Before surgery I tried dilantin. After taking it for 2 weeks I found out I'm allergic to it. It took weeks before I felt any side effects because anticonvultant meds take time to build up in your system. I don't know about Gabapentin.

I hope you find relief and sorry I am not much help.

Mindy
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

Sue

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Re: Trigeminal nerve problems and Gabapentin
« Reply #3 on: November 06, 2012, 11:24:52 pm »
Thanks everyone.  This facial stuff comes and goes.  Most of the time I feel fine.  Well, as fine as we can be, anyway.  I haven't taken the pill yet.  But, I feel better about it, now.  Thank you so much.
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

LeAnn

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Re: Trigeminal nerve problems and Gabapentin
« Reply #4 on: November 12, 2012, 03:11:54 pm »
Has any one been diagnosed with trigeminal neuralgia after surgery. I had big surgery 2007 . They got all but 5% after I had numbness in my lower jaw and tongue. I did fine for 2 & half years then it started to grow back. I had Gamma Knife in Jan. 2010. Did real well but four months later as the tumor was dying I had facial paralysis due to swelling. It was not Bell Palsy I had that first surgery. It was bad for four months then I had an MRI and  they told me it was dying everything looked good and I have felt wonderful for a year :D......... But  now for the past or four weeks now I have had jabbing pain that may feel like an electric shock.at my temple and pain in my cheek and jaw I thought it was dental but had an exam and I was told  It was not, The pain is so bad!!!! the two ER Doctors told me it looked like trigeminal neuralgia and that I needed to get in touch with my  neurologist .So I have called and try to make an appointment but I have no insurance and they don't want to see me cause I still have a out standing bill....... I am at a painful lost   

wendymenard

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Re: Trigeminal nerve problems and Gabapentin
« Reply #5 on: November 12, 2012, 05:33:30 pm »
Hey Sue
Recently I started having sharp pain coming down my jawline into my teeth. I am on gabapentin. I was on 300 mg for facial pain but since this starting my doctor put me on 600-900mg a day. He said that I will know what dosage is right for me..I have been on 600 for 2 days and I still have some pain so today I am increasing to 900mg. Hoping for some relief. I just watched a couple of You Tube videos on trigenimal neuralgia and I cried. I am dealing with painful endometriosis and having surgery soon for that and then this just started...I don't know what is worse having a numb drooping face or having a face that hurts so bad you cant eat or brush your teeth without pain. I hope you get some relief soon. Wendy
Retrosigmoid approach Oct 25. 2011  2.5 cm tumor on hearing nerve touching facial nerve and brain stem. Experiencing several post op issues but staying positive and creating my new normal

Sue

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Re: Trigeminal nerve problems and Gabapentin
« Reply #6 on: November 13, 2012, 01:45:57 am »
My problems are not NEAR AS BAD as what you gals are experiencing.  Not at all.  I feel so badly for you and hope that both of you can find relief. 
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

chloes mema

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Re: Trigeminal nerve problems and Gabapentin
« Reply #7 on: November 16, 2012, 06:31:36 pm »
Sue
Glad to find this post since I picked up my prescription today; I'm also very leery about taking this or any drug.  My husband keeps telling me you didn't have a reaction to the steroids so you shouldn't have any to this.

My doctor prescribed it for the hemifacial spasms I'm having, no pain but today they really ramped up non stop for two hours, he did say it would make me drowsy.  Haven't taken them yet, guess I'll start in the morning.

Any one else taken this for facial spasms?  How did you do?

Karen
Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back

Sue

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Re: Trigeminal nerve problems and Gabapentin
« Reply #8 on: December 17, 2012, 01:03:13 am »
I take mine at night so I will sleep!  Dual purpose pill.  Hope they help you. 
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode