Hemifacial spasms & gabapentin

[chloes mema]

Having hemifacial spasms 6 months after CK.  Doctor prescribed gabapentin 200mg daily.  Anyone taken this drug for facial spasms?  What was your experience?

A little leery to take this med but I need to do something soon.

Karen

[chloes mema]

I started the meds this morning  , so far ok.  The only thing I've noticed (other than the nerves are calming down) is my balance seems worse; oh, goody!  If this is the worst of how I react to the meds then I think I can deal with this. 

I'm one that does NOT like to take meds of any kind so I get rather paniced and paranoid when I have to take any sort of meds.

Karen

[chloes mema]

Nine days into the prescription, spasms are down to one or two a day  - usually one in the morning before meds and then one in the afternoon.  Over Thanksgiving I noticed that the water when I first got in the shower or bath tub would trigger a spasm, then this morning coming out of a restaurant after breakfast I guess the bright sun light triggered one.  I told my neighbor about this, she is a physical therapist, she recommended I get a feather to run across my face.  She said that's what she does with her patients that have nerve / sensitivity issues.

Just felt like sharing.

Karen

[grammyslim]

having same issues wish I knew what triggered them - then I could try to prevent
 
thanks I will try feather

grammyslim (not any more - pills make me puffy)

[chloes mema]

grannyslim

Saw my PCP yesterday, he was not thrilled that I am on Gabapentin but did tell me to try a natural approach.  He said the spasms may never stop but then they may stop as suddenly as they started.  So if they bother me enough, I should try a healthier approach.   

He told me to try ALA (alfa lipoic acid) 200mg daily for 2 months; said you can get it in a health food store.  He said the nerve endings are seeking "something" (can't remember exact words) so why not feed the nerve endings (with ALA) instead of blocking them (with other drugs). 

So after I've finished this round of prescription drug, if the spasms become bothersome again I will try a healthier approach. 

I have not, as yet, done any research on-line regarding ALA so that may change my mind.   

Good luck to you.

Karen
 

[b91221b]

I, too, have been experiencing facial spasms and sensitivity recently.   CK in October 2009.  Last month, Dr. prescribed Gabapentin, 300 mg. When I read of all the side effects, I've been reluctant to take it.  Glad to hear that some of you have taken the med with no substantial problems, and also happy to know there might be a natural substitute.  I'll look into that.

According to the recent MRI, Dr. says that the AN is pressing on the trigeminal nerve, causing the pain.  It's sporadic, but when it flares up, it makes it difficult to concentrate on anything else.  Have not shown much necrosis since CK, 3 years ago.  AN is still the same size.    All other original symptoms: right side SSD, balance issues, headaches, tinnitus still appearing.  I think after awhile, you just get used to all of this, and you only notice something that's either "new" or very painful.  Daily life is good....just a little slower.   

[chloes mema]

Barbara
I can certainly relate to all you said about getting use to it & what you notice is if it's louder, more painful, or something new. 

I, too, read the side effects but for some reason the side effects of the steroids freaked me out more so I just started popping pills.  I guess I figured if I took the steroids with no side effects then the Gabapentin would be OK too.  The Gabapentin has brought the spasms down to about two a day now.

Something this past week has made my tinnitus about 10 times worse, I can't figure out what though.  I did have a glass of wine, took an hour nap & when I woke up my tinnitus was roaring.  Since then I've stayed away from the wine but I suspect it was just coincidental.

I looked up the ALA on line & it looks like it had positive reviews.  Of course, could not find any reference to ANs or facial spasms, it is given to diabetes type 2 patients that have neropathy (sp?).  Sounds like it's safer than the the prescription drugs the doctors have been filling me with.   

Good luck

Karen

[mindyandy]

Barbara
Sounds to me like you are not having facial spasms but trigeminal pain. I had trigeminal pain almost 4 years post CK. My AN was pressing on my trigeminal nerve and it was very painful. AN did not grow but I'm assuming always was on the trigeminal nerve but just never triggered any pain till almost 4 years later. I took antisezure meds that most people take with trigeminal issues and it seem to have help tremendously until 2-3 weeks after I started the meds I had an allergic reaction. I had to stop taking them. I sent my scans to House and Dr. Friedman called me and we talked. He said no growth and the only reason he suggested surgery is because I was in pain. I dealt with the pain for 4 months before I went to have surgery and so far so good. I still have my AN (read my past posts) and they basically took a small piece and did a decompression surgery like they would for trigeminal sufferers. We decided this because there was no growth and my hearing was and still is perfect.

PM me if you have questions. I hope the pain stops for you
Mindy

[Bonnie B.]

Karen,
Sorry to hear about your facial spasms.  I am glad that the Neurotin is helping.

I am nine months GK and have developed facial spasms, tinnitus, left sided facial weakness and a bad posterior headache.  I went on prednisone for five days and the headache disappeared.  I was tapered off the prednisone and all of the symptoms came back.  I am now on decadron 1mg. per day and the headache has left.   The left sided facial weakness has not gone.  I can live with that however.  I know shortly I will have to taper off the decadron and I just hope that the headache won't return.

I guess I got over confident that I had no side effects from the GK for almost eight months.   Again, things could be worse.

[chloes mema]

Bonnie sorry to hear about your side effects & the fact that they took so long to show up but after hearing back from several people on the forum & reading other posts I guess that's normal.  Hopefully, all this will come to pass.

I've been taking the ALA but I don't think it's making any difference.  This morning I had 5 full blown spasms before 8AM which is the most ever.  So I guess it is what it is & I'll just have to learn how to deal with it.

One thing I noticed I'm doing is when I walk I'm "leading with my head" if that makes sense to anyone.  I find myself pushing my head forward & then rounding my back which I never did before.  Don't know if it's a way my body is trying to compensate for the balance issues or what but I need to correct this before I'm so stouped over I can't stand up straight any more.  Any one else doing this?

Karen

[Trish]

Hi Karen, I haven't been on the site for a while so just picked up your post about hemifacial spasms. Mine were very bad about 3 years ago, after gamma knife, and I wasnt offered any help or meds (I'm in UK) and I felt very alone. However after around 15 months they went away and I have had no recurrence. My consultant did tell me that was likely. So it might be that you have to put up with a few months of this, but that it will just calm down and go.

I hope that helps you. I told people at work about the problem and just used to out my hand up to my face when it happened and that  made it easier to deal with.

I know what it's like and feel for you, but take heart because it is likely to go away in the end. All the best.

Trish

[chloes mema]

Hi Trish
Thanks for the words of encouragement.  I've finally come to terms with the spasms, "it is what it is".  Apparently, (so far) I seem to be the only one bothered by them so I've finally given up on trying to melt into the floor when they happen.  Like my PCP said, "they're not life threatening, they're just annoying"! 

For me neither of the drugs I took helped so I'm staying away from prescription meds for this one and trying the ALA. 

Glad to hear that yours finally went away.  I've had two doctors tell me they may never go away and one doctor that keeps reassuring me that they will go away so I guess time will tell. 

Karen

[Trish]

Hi Karen

I'm really glad you are coming to terms with the spasms. I think it helps if you can try and continue as normally as possible.

 The other thing my consultant did tell me was that they might well get worse before getting better. To try and keep some form of control, I actually bought a clicker so I could easily count the number, and at my worse period I was clocking around 50 spasms a day. However I've not heard of anyone else with that level of problem so I'm very hopeful yours won't get that bad. BUT the really important thing to know, which would have made things so much better for me, was that even though they were so bad, but they did still go away. They gradually became fewer, and after around 15 months (from first spasm) I didn't have any more. So I really believe the same thing will happen for you, and you just need to stay positive. Easier said than done as I well know!

I've posted this publicly in case this helps anyone else but I'll also reply to your message.

All the best
Trish

[chloes mema]

An update:

Now the spasms have become stronger and more frequent.  They are going down my neck and a few have gone out to my shoulder.   

Stopped by the cyberknife center this morning to talk to my oncologist.  He has put me back on Gabapaten and is having me do my 12 month MRI earlier, as in February (February 14 to be exact, happy valentine's day).  He said it might tell him if the tumor is swollen and pressing on the 7th nerve but that's about it. 

So I'll keep you all posted.

Karen

[sarahinPA]

I am so sorry that you are having this. I also had facial spasms, and as they got more frequent and lasted longer and longer, my doctors also scheduled my MRI sooner than later.

I did have regrowth of the tumor after my GK treatment in 2009. In January of 2011 I was put in a 6 month watch and wait, and then had translab surgery on July 29, 2011, for a .2cm regrowth.

Good luck, I will keep you in my prayers.