Under Eye Twitch

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kltb04
kltb04 Member Posts: 1,051
edited June 2014 in Not Diagnosed With a Recurrence or Metastases but Concerned

Just putting this out there for hopes of reassurance, not for a diagnosis :)  I am year out from primary dx, stage IIB, neo adjuvant chemo (succesful), one node, BMX, rads (was iffy but decided to go ahead with it).  I am a worrier.  I have worried from the beginning that my cancer had already spread by the time I was dx.  I had a whole body PET and head CT upon dx that showed it hadn't but I still worry every time I have a new symptom.  I have posted quite frequently worried about my ribs (which I know is a common issue) and just when I think I have that fear under control, another pops up.

I noticed a week or so ago, a "fluttering" under my left eyelid.  It is not a twitch per se, it is more of a vibration.  It is constant.  It is not a pulse in time with my heartbeat, more like a tiny little hummingbird.

 The only way I can "see" it is just in the edge of my vision if I look down (because I see the lid moving).No vision disruptions, no other issues.  I don't know if this is a new symptom or if it is something I have just now noticed.  I was reading back over old chemo related posts and read back in September where I was telling someone I had issues with irritation/dryness in that eye/occasional twitching.  But if this current problem was going on back then, I didn't notice it.

I have my six month follow up with my MO next week and I am certainly going to talk to her about it (I am six months out from chemo) I don't know what kind of scans she has in mind but she is a scanner so I anticipate something anyway.  But when I was talking to my RO today, hoping for reassurances, he told me "well, maybe you can ask her to order an MRI"  That was not what I wanted to hear.  I wanted to hear it was stress, it was chemo after effects, anything.  Then he agreed it wasn't a common way in which brain mets would present and was trying to be reassuring that I did have a complete response to chemo...which we know doesn't cross the blood/brain barrier so fat lot of good that would have done, right? 

Ok, barrage me with feel good tales of how all of you have eye issues too so I can put something in my head and start climbing out of what some of my BC sisters and I have coined "the fear hole."

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  • GoldenGirls
    GoldenGirls Member Posts: 608
    edited February 2013

    I will start by telling you that I am not Stage IV and am actually her for my mother who is. During the year or two following her initial diagnosis she had constant issues with the fluttering/twitching that you describe as well as dryness and a grainy feeling in her eyes that would come and go. It was diagnosed by her doctor as stress. She also suffered from the same symptoms when my father passed away and every time since then that she has felt especially stressed or anxious. I too have suffered from all of those same symptoms and even after being told by my family doctor and eye doctor that these things are usually caused by stress or fatigue or a combination of both; I still was worried. I have since made a point of keeping track of when these symptoms come on, as has my mom, and sure enough it happens when we're especially tired or worried about something.

    Hope that helps :)

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  • kltb04
    kltb04 Member Posts: 1,051
    edited February 2013

    Thx for the quick response canadagirl...I *am* stressed.  I am coming upon scans, but yet am done with the active part of my cancer treatment (except for Herceptin) so I feel somewhat like a sitting duck.  And this is my one year anniversary of diagnosis.  Add in 2 kids, 2 cats, one puppy and life in general and I stay stressed out. :)

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  • pupmom
    pupmom Member Posts: 5,068
    edited February 2013

    Kitb, are you on an  anti-hormonal? I haven't had that se, but could possibly be an se from Tamoxifen or an Al.

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  • kltb04
    kltb04 Member Posts: 1,051
    edited February 2013

    Yes, I am - I just realized I hadn't updated my info since my surgery.  Tamoxifen started in  November - I was researching and I think the stats are like 1% as a SE - but it's something.  Anything to make myself feel better :)

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  • pupmom
    pupmom Member Posts: 5,068
    edited February 2013

    I know what you're saying! Got my yearly scans coming up in March am and trying to stay calm. There is a possibility my DH will be out of town when I get them so that makes me doubly anxious. Hang in there!

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  • LRM216
    LRM216 Member Posts: 2,115
    edited February 2013

    I know very well what you are referring to as I get that more times than I'd like to remember - but it is NOT cancer related at all.  It's a tic in the eye muscles.  Annoying yes, lethal, NO!

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  • kltb04
    kltb04 Member Posts: 1,051
    edited February 2013

    Thanks LRM216 - I had asked and asked my FB group and researched it to death and had come to grips with it being something simple.  It was just the way my RO immediately looked so concerned and started flipping through my chart and saying how much more effective MRI was than CT at detecting small metastases and how it wouldn't hurt for me to get the MRI as a baseline.  Just freaked me out.  On the one hand I am glad for scans but on the other, I think I could live in happy denial if I had drs that just patted me on the head and said it was all ok.

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  • cooka
    cooka Member Posts: 278
    edited February 2013

    Hi all, I had the my Taxo-twitch as i called it for 8 months after chemo...it has not returned...and I don't miss it:)  Good luck with yours, I am betting it goes away soon.

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  • kltb04
    kltb04 Member Posts: 1,051
    edited February 2013

    Ya'll are making me feel better :)  I finished August 13th/2012.  I just wish I knew when this started, lol!  I just NOTICED it last week but it could have been there for months.  You should see some of the things I have been googling. Under eye flutter, under eye vibration, under eye pulsing!  I had my daughter look and see if it was doing it when my eye was closed! (it does)  I feel better when I read stories that lots of people have the issue, but it helps to hear from people here - who have the cancer issue/concern.

    kayb - so glad you had a clear MRI.  I know my MO will do some kind of scans at some point; I just don't know what yet.  Thank you for all the info.

    cooka - thanks for the input...I hope so.  Stressing and worrying about it certainly isn't helping me I know. 

    I almost feel better knowing that my eye is irritated at times because I think it may be truly an eye thing and not a brain thing.

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  • hopeful123
    hopeful123 Member Posts: 191
    edited February 2013

    kltb- good to hear from you (used to be in the March chemo with you). I know what you mean by constant worrying, I do it all the time. Evey ache drives me crazy. In any case I had the constant twitching in Nov/Dec and it was very annoying, I am not sure if it is a delayed chemo effect or Herceptin. But it is now gone. I have seen other posts about this, so you are definitely not alone.

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  • kittymama
    kittymama Member Posts: 139
    edited February 2013

    kltb,



    Until your post, I had totally forgotten that the twitchng eye phenomenon also happened to me! This was post treatment. I didn't do chemo, but I definitely had (and still somewhat have) post traumatic stress from all the tests, call-backs, results, etcs. To this day, my heart pounds if I see a phone call from an unknown number. I'm sure the stress is what triggered the eye twitching. Anyway, it lasted a couple of months, then went away on its own.

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  • jenn333
    jenn333 Member Posts: 178
    edited February 2013

    I have the eye twitching thing when stressed too.  Seriously irritating.  I mentioned it to my mother when I went back to visit in December and she says she has the same thing when she gets stressed.  She does not have, and never has had, any type of cancer.  I think you can relax about it being mets.

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  • kltb04
    kltb04 Member Posts: 1,051
    edited February 2013

    Well, it continues - but I so appreciate all the input and "been there done that". I forget about it until I look in the mirror and there beats the tiny hummingbird :)  

    Thank you hopeful, jenn333, and kittymama for chiming in.  Hopeful, yes I remember you from the March board - I need to pop over there sometime and update, I just am not on much anymore.

    Appt is Wednesday and I keep imagining how the conversation will go.  Knowing her she will order scans anyway, since it has been 6 months but I am really hoping for a "this is not something to worry about" conversation.

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  • kltb04
    kltb04 Member Posts: 1,051
    edited March 2013

    Sorry it has taken me so long to update but if anyone searches this topic, I wanted to follow up on it.

    I first had a followup appt with my RO and he scared the crap out of me, suggesting I ask my MO for a MRI and all this nonsense.  I freaked out for a few days, then calmed down about it.  I asked MO and she assured me she had NEVER seen brain mets present that way but that she would add a head CT to my scans in MAy to reassure me. 

    Since that time though, it has abated somewhat to where it "comes and goes" more than being a constant.  I am really not at all concerned about it at this point.

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  • NikkiDanni
    NikkiDanni Member Posts: 2
    edited March 2013

    I finished chemo end of January, during the span of treatments,i had the eye twitching, wasvery embarrassing.It has now subsided mostly, but i notice when i am pushing myself past fatigue, it comes back with a vengeance. Now if i could just get my right thumb to stop.

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  • lbrewer
    lbrewer Member Posts: 766
    edited March 2013

    I had a under eye twitch as well.  So bad the eye dr could hardly examine it.  Turns out most of the time its stress causing muscle fatigue.  Wonde why we are all stressed out :(

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