ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: chloes mema on November 16, 2012, 06:44:25 pm
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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
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I started the meds this morning :D, 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
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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
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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)
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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. ;D
Good luck to you.
Karen
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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. :)
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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. :o
Good luck
Karen
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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
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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.
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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
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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
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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
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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
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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
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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.
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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 ;D (wasn't anything I didn't already know)
Karen
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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. ;D
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
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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! :D
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. ;D
Karen
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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.
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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
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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
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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. ;D
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
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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!
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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. :D
Glad you only encountered one episode of "monster face", hope it stays at just one.
Karen
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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) ;D 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
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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. :D
Grammyslim
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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" ;D
Karen
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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
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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 ;D ), get plenty of rest, & that stress & anxiety will make the spasms worse.
Karen
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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. :D
Karen
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Karen, Good thinking!!! Yikes, Lyrica