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Old 04-30-2011, 07:27 PM
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Horrendous eyelid twitching since Topamax


I know eyelid twitching is usually caused by caffeine, viewing computers, stress. (three factors I'm no stranger to at the moment, LOL) A lot of people get them, and I have been no exception intermittently for the last 20 years of my life. However, since I've been on Topamax, I have been getting them daily, several times a day, both eyes, left one upper lid and right one the lower lid, but also, a few times, below my left lower eyelid too. The lower lid is visible too! It is beyond annoying as it is every day now. It's worsened since the dose increase, which is only to 100 mg/daily of Topamax. I have no idea if it's the Topamax, and I see no indication that eyelid twitches are a possible side effect. When I first started to have them, I mentioned it to the neurologist and he was not concerned, and I guess, why would he be, as eyelid twitching is very common. But this is beyond anything I've ever had, and I almost half wonder if it's connected with seizure activity as the twitching is almost tremor like-it's gotten that annoying and daily. It stops for a bit and picks back up. I NEVER had the twitches in the lower eyelid ever-these ones are bizarre and new. I also am getting twinges at times near my right eyebrow as well, so again, these go above and beyond. I don't care-I see neurologist at end of month and will tell him that these are beyond any norm I've ever had.

Last edited by k2s4ever; 04-30-2011 at 07:30 PM.
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Old 04-30-2011, 08:13 PM
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Have you found any way to make the twitching stop? Maybe try lying down, closing your eyes, putting a washcloth or sleep mask over them?

When was the dose increase? Maybe the twitches will stop when your body adjusts.
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Old 04-30-2011, 10:45 PM
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Thanks Nakamova. Well, my dosage increase was 3/31, so that's a month ago already, which seems plenty of time to adjust, but it also occurred to me that I'm on a decrease of Keppra too. (500 mg less per day) Then again, the twitches started BEFORE the Keppra reduction was implemented. So I just don't know if this is plain old stress and strain and caffeine, just bad timing and for whatever reason, just especially enhanced twitches. But they have never been as pronounced as they are now, like little tremors really. I know I don't get enough sleep, I work full-time, have a demanding job, blah blah, everybody has stress, so like stress isn't going away. Yeah-I've tried closing my eyes and lying down. The other day, I did that, it was 11 at night, twitches were going all wacky, and then of all things, out of the blue, my olfactory aura went off too-unusual for me at that late of an hour; I had been fine on that end of things all day, and it was a very strong aura too. Something is just really off here.
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Old 05-01-2011, 08:57 AM
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You're right, the stress, fatigue, and caffeine probably aren't helping, and it may be a combination of those things with the Topomax. Is there any kind of break in sight for you? It would be great if you had an opportunity to relax and cut down on the caffeine to see if it made a difference.

In the meantime, keep trying to find ways to get the twitching to stop. Eyedrops might help. Certain music? Deep breathing?

And keep bugging your neurologist. Eyelid twitching can be seizure-related, and it may mean that the Topomax just isn't doing it's job.
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Old 05-01-2011, 04:43 PM
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Yeah-I know, caffeine is no help! If anything, I've cut down on it some. I used to drink an extra cup of coffee when I got to work, and I at least eliminated that before the Topamax. But caffeine is not gone all the way by any means.
And I agree, I'm going to bring it up to my neurologist again as it is an additional occurrence. Thankfully, I don't ever lose awareness. And again, the neurologist does not officially declare me as having simple partial seizures anyway. We're still not sure that it couldn't be migraine. Right now the only issue I have that has been on the neurology radar is the unpleasant and persistent olfactory aura. No medication has eliminated them! Reduced yet, eliminated-no.
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Old 05-01-2011, 08:12 PM
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I'm glad the olfactory episodes have been reduced a bit. Progress!
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Old 05-02-2011, 06:36 PM
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I had this problem too, but I just realized that it hasn't happened since my dr put me on Effexor because my body was shaking. I wasn't having seizures my body would just shake for a half hour or more, usually either an arm or a leg or switch back and forth between them.

I'm still shaking a little bit, just a twitch here and there on an arm or a leg that will only happen for a few seconds every so often. But since the dr put me on that my eyes have stopped.
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Old 05-02-2011, 10:01 PM
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valieriedl: interesting. Effexor for twitches.
Today my eyelid twitches have continued. I've had them daily for a good 2 months now. It's ridiculous.
And second day in a row to have my lovely olfactory aura, so just love it. Nothing ever seems to work. Hopefully I'll never go back up to 15 or more a month, but day two of May and I'm at two auras already-not off to a good start.
Still caught between is this migraine or E? Yesterday it was tripped by an actual fried skillet food smell (which was also of a burnt type smoky quality). I just can't always avoid these in my environment everywhere I go and sometimes they trigger, sometimes they don't. One time recently, I was lucky, and a similar skillet thing DIDN'T trigger the aura. But I can't live under a rock. But it tripped off yesterday with an external smell, and I guess the dumb little neurons are still haywire and even though I woke up fine today, the aura went off again absent of an external odor today. That's what is annoying because my aura is quite random most of the time. But because external smells are sometimes a trigger, neurologist has thought I might have migraines. This is what is so vexing.
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Old 05-03-2011, 03:56 PM
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Did you ever have a problem with your eyes focasing k2s4ever?

I've had it several times where the two eyes just wouldn't focus with each other. It would be so bad sometimes that I would have to walk around with one eye closed or I would run into things or trip over my own feet. I don't think this has happened since I started the effexor either.

I don't know if this is just a random occurance that it helps this or not?
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Old 05-03-2011, 05:00 PM
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I definately have problems with focusing my eyes on the topamax. Most of times it feels like im slightly cross eyed and it takes a while for them to fix themselves.
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Old 05-03-2011, 05:09 PM
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I've had that happen several times BigWill. My husband and I were in the car and I kept thinking he was driving half way on the road and half way off the road. I wanted to scream because I thought we were going to run into something until I closed one eye and saw he was driving just fine where he should be.

This may go on for hours too, it's not just something that happens for a few minutes and then goes away.
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Old 05-03-2011, 06:55 PM
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yeah definately takes mine atleast an hour when it happens. Ill be tryin to read a magazine and ill just have to put it down and just let it do what it does.
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Old 05-04-2011, 09:27 PM
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Hmmmm. I can't blatantly detect focusing problems with the Topamax, no. But when I have the twitching, if I'm looking at a book or computer screen for example, it is definitely shaking-but that's the twitching. However, I never had twitching like this until I was on Topamax. So it still makes me wonder.
And I was hoping the Topamax might show more promise, but I had seven auras last month, but then again, perhaps there is still room for a dosage increase to be considered. And again-these auras, are they E, or are they migraine? Who knows? Last one was two days ago, so at least I can smell normal right now. (and taste)
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Old 05-12-2011, 09:22 PM
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Now my lower left lip has joined the fun


I have never had that happen. Never have had my lip also twitch, but two days ago, it started happening, or more to the point, that's at least when I first noticed. Lip twitching apparently can also be just like eyelid twitching too-the whole stress/caffeine connection deal too, well, in terms of quick preliminary look up (I'm hardly an expert). But, I also saw references to potassium deficiencies, and I am wondering isn't Topamax linked to that too? I am taking a general supplement daily already, but maybe I need a higher dose. Maybe I need a blood level drawn. When I was ill a few years ago and hospitalized, (unrelated to any of this!) I ran really low and had to be given an IV of potassium but I also wasn't allowed to eat as I was very sick.
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Old 05-12-2011, 10:31 PM
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It's worth pursuing -- ask your doctor if there's a reliable way to test for a potassium deficiency. And in the meantime consider adding potassium-rich foods to your diet (bananas and potatoes!).
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Old 05-13-2011, 04:43 PM
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Agreed. I have read conflicting information about Topamax and Potassium levels, but it is still worth asking my neurologist about anyway. And today, of all things, now a small part of my chin is also twitching. This is very odd. Thank goodness it's all subtle enough that I am at work not looking like this contorted side show person! But the twitch on my right lower eyelid is visible if someone really looks at it close enough. The rest are subtle enough.
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Old 05-31-2011, 01:32 PM
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Topamax is going away


Well, twitches have continued on a daily basis, and affecting other areas of my face, which I just cannot have when I am at work all day. Saw my neurologist and reported this. So...
Obvious conclusion was it must be medication related and since I am still having the auras with the Topamax anyway, try something new.
Switching to Lamictal. Only concern with that is the off chance of the rash thing (definitely don't want the rash!!!) but can look at the appropriate thread, start a thread there. and heaven help me, may I please not get a twitch from the the Lamictal!
I am going to have to look that one up!! Also-again with me-we're really not sure I have simple partial seizures anyway-still looking more like I may have a migraine deal. My auras last way too long, and I think would have progressed into something generalized by now if I had E, so I am actually hoping signs are pointing away from E, but I am still a question mark E person.
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Old 05-31-2011, 02:04 PM
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I hope the Lamictal works for you. Taper onto it as slow as possible. It may feel like it's taking forever to get up to the working dose, but it's worth it to avoid even the tiniest possibility of an allergic reaction.
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Old 05-31-2011, 03:57 PM
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Yes. It's starting at very low dose. I'm still on Keppra. I've remained on that all along. It was the first tried alone but was not doing anything, so Depakote ER was added and really helped, although still did not eliminate the olfactory auras (my primary symptom). Therefore, switch to Topamax as it was also a migraine and anti-epileptic drug medication. Because I do get on occasion very bad headaches, the idea of migraine entered the arena. And fact is, I do get those sparkler scintillation things across my visual field sometimes. My neurologist is much more on the path that I have some sort of migraine variant, but it is not determined yet. So I am still on the E forum here because I just don't know. Just like since we don't know if my aura is E or migraine, I am on medication to cover both. Now, whether Lamictal is really aimed at Migraine, who knows, but whatever. I just want the olfactory aura GONE!

Last edited by k2s4ever; 05-31-2011 at 04:00 PM.
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Old 06-03-2011, 11:23 AM
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I haven't had Topamax in three days now-took my last dose then, and my facial twitches are gone. So it unequivocally for me was a side effect of Topamax. I feel so much better now. As soon as I stopped taking it, the eyelid twitch stopped, and the lower lip quiver has finally also. It is amazing how significant these side effects were. Enough for me to worry I was now having motor seizures!! But clearly it was a side effect, pure and simple and the twitches are gone. I just wonder why this isn't known or really listed on the side effect profile because it was really bad and constant, every day for hours on end at a time, even at times in the inner part of my eyelid in the corner. But then when I saw my chin lip start to quiver too, I knew it had to be the Topamax as that was the only variable. New medication, never ever had facial twitches under my one eye and then in lower lip and chin. The one under the eye jumped out like its own pulse for heaven's sake! No-totally different from the common minor stress related twitch I had very randomly in the opposite upper eyelid which would go away shortly unlike these monsters!--it's tricky because in random times before, like anyone else, I have had upper eyelid twitching that stops on its own, the normal stress related sort of thing, and not something that anyone would ever notice versus that totally bizarre jumping below my eye that I only just got rid of three days ago!

Last edited by k2s4ever; 06-03-2011 at 12:51 PM. Reason: addition
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