Hemifacial spasms & gabapentin

[chloes mema]

Thanks SarahinPA

Sorry to hear you had regrowth.  I think we all assume once a procedure is done, it's done but guess not.  How are you doing now?

I wasn't going to take the Gabapentin but the spasms are getting stronger & more frequent so guess I'll jump tonight with starting the pills.

02/03/13 - I find this to be a hoot as they say.  I was Googling "gabapentin used for facial spasms" and this posting popped up.  Had to check it out     (wasn't anything I didn't already know)

Karen

[chloes mema]

Spoke with my Ophthalmologist office yesterday inquiring if these facial spasms would have any long term effects on my left eye.  My impression was probably not.  I did NOT talk to a doctor but was talking to a tech who was talking to a doctor.

She suggested I use Sustain Gel eye drops at night and contine using the GenTeal drops during the day.

She also said if I get to the point where I can't stand it then call them and they would do Botox.  She said insurance would pay for it because it was medically needed.  My husband said he could see me waiting till I get more wrinkles before jumping into this.    

I didn't go into it with the tech but how is Botox going to work if they only treat the eye area?  I assume this will only keep the eye from closing so strongly, right?  The rest of the side of my face will still go into a spasm unless (?) they Botox the whole left side of my face?

Apparently, there is nothing that can totally stop the spasms?  Does anyone know?

As before, the Gabapentin doesn't seem to be doing much but then I don't know how much worse the spasms would be now if I weren't taking the pills.

Karen

[chloes mema]

Have been very frustrated that my neurotologist will NOT write the script for the MRI with contrast so this morning I took the chance and sent a text message to my wonderful oncologist asking if he would write me a script for MRI with contrast and he said yes!   

You can not believe how excited I am!  I know that sounds weird but I know from reading this forum for almost two years that you need to follow these little guys with MRI's with contrast.  So now Thursday I'll get my MRI done with and without contrast.

I called the diagnostic center to let them know that I got a script for "with contrast".   The neurologist has a certain protocol he follows at this diagnostic center for AN's so I mentioned this.  The lady was very nice, told me to bring both scripts and they would work it out.   

Also, on a side note with a little humor, I've started referring to my face when I have spasms as my Picasso face.   

Karen

[grammyslim]

I have having same issue since Labor Day meds did nothing for me ,except  give me terrible side effects. No difference in amt of spasms  BUT tomorrow will be one week without them. 

[chloes mema]

Grammyslim

Did the spasms just stop on their own?  I'm hoping that soon this will happen for me.

So glad yours have stopped.  I'm hoping for you that they stay stopped.   

Talking about side effects, I was commenting tonight that I've had a headache for a week.  After a little research on line this is a side effect of the Gabapentin.  I'm not going to take any more pills.  They don't seem to be helping, I have a headache that's getting worse as I type, and I figure what's the difference if I stop them now or in 10 days when the prescription runs out.

Karen

[Roblangford]

I started taking klonazapam at bedtime..neurontin did not seem to help. Today makes two weeks, but spasms are still there.... Thank God there is no pain. Botox will be  next trial I guess. Then possible surgery .

Rob

[chloes mema]

Very strange, I didn't take the Gabapentin today and so far I've had only one spasm.  Actually, yesterday I was wondering if the pills were making the spasms worse since I could feel my face moving almost none stop for the better part of the day.  Of course, I've had this before were there has been a day or two with low activity then the darn thing takes off again.  I figure it's calming down because I'm going for the MRI on Thursday to ferret out the cause of the spasms.   

Rob - good luck, hopefully the spasms will calm down and you won't need to turn to Botox or surgery.  I feel your pain, as they say.

Karen

[sarahinPA]

I am doing well, I battle with the regular AN complaints, headaches and tiredness, but all in all im doing good.

Funny youve named your spasms "Picaso face"  When I was having mine I called them "monster face" We had to make humor out of it.

Since sugery, i had one eposiode of "monster face" about a day after surgery, and none since. Sometimes i feel al ittle twitch in my face but nothing major or anything to be concerned about.

Good for you for demanding contrast! All of my MRI's have contrast. It makes me a little dizzy but is worth it because its so important!

[chloes mema]

SaraphinPA

I'm glad you mentioned that the MRI with contrast makes you a little dizzy; I've been feeling "weird" all day and the later it gets the worse I feel.  This is totally new for me, I don't remember having this feeling before with the MRI with contrast.  Oh well, this too shall come to pass.

I found it very interesting that I took 10mg of Valium this morning before the MRI (maybe that's why I feel weird) and I have not had one spasm since taking the Valium.  I think I remember reading on the forum about someone that took Valium for their spasms.  For sure going to mention this to my doctors.  Not sure I want to take 10mg that's sort of strong but a lesser dose might work just fine.

Yes, we must have a sense of humor through all this.   

Glad you only encountered one episode of "monster face", hope it stays at just one.

Karen

[chloes mema]

Had what should have been my 1 year MRI following CK this morning but it happened a couple of months early.

Well, as usual, I took a look at my MRI CD; 950 images (no I didn't look at all 950)  but it does look to me like there is a distinct dark spot in the center of the largest part of the AN so I'm hoping this is in fact true and a good sign.  Other than that I have no idea what I was looking at.

Internally, my head does not look pretty.  I didn't look at the reports on the CD; maybe I'll do that tomorrow but I know from experience that is not really a good thing to do; wait till next Friday for the results from my doctor.   

Karen

[grammyslim]

Karen,

My facial spams did stop on their own.  I have since had one which lasted longer but been good ever since.  My  face has been numb on the AN side and my eye is twitching but my face is not moving and my eyes are not closing so I can deal with it.   

Grammyslim

[chloes mema]

Grammyslim
Good news from you!   

I'm still hopeful that the spasms will stop as suddenly as they started.  Will see oncologist this Friday to discuss latest MRI & talk about the spasms.  None of the options I've read for controlling spasms appeal to me so I just "grin and bear it" 

Karen

[chloes mema]

As an "ah-ha" moment occurred to me last Friday.  I had been taking the Gabapentin on a full stomach right after breakfast.  Up until Friday I thought the drug wasn't working & possibly making the spasms worse.  Friday I took the Gabapentin on an empty stomach, right after I woke up, & now the drug is working much better.  So for me taking the drug on an empty stomach is the key.  The spasms are still there but are fewer & not so long or strong.

Karen

[chloes mema]

And the beat goes on...

Went today first to a plastic facial surgeon to discuss getting Botox treatments to control the muscles.  Then went to my ENT who strongly rallied against Botox.  He said it would weaken the facial muscles further.  Which is just as well since Botox doesn't appeal to me.  I'll just be a "scrunchy face"...

Also, the plastic surgeon told me to stop all caffeine (like that's going to happen  ), get plenty of rest, & that stress & anxiety will make the spasms worse. 

Karen

[chloes mema]

Went to my oncologist Friday who had prescribed the Gabapentin.  He said he wanted to prescribe a stronger drug since other drugs don't seem to be working for the facial spasms so I took the new prescription.  Of course, could not read a thing he wrote on it.

Took the prescription in to get it filled today.  It was for Lyrica which cost me $90 (my co-pay) for a 30 day supply.  Took the bag to the car with me, read the l-o-o-n-n-g list of possible side effects and promptly took the prescription back in & asked for my money back.

Explained that now the only real side effect I have is embarrassment, I don't want to exchange that for possible death!  Yikes!

So I'll stick with the Valium on an as needed basis & get over the embarrassment. 

Karen