Eyelids Twitching

After receiving my 5th IV drip treatment (Oxaliplatin) the day after Thanksgiving, I noticed neuropathy got to my eye lids. When I left the clinic and as soon as exposed to the cold air, my eyelids twitched and fluttered. My eyes started to close and I couldn't see. It lasted about few seconds then went away. It went on and off few times. I tried to put my hands over my eyes to block out the cold air but my eye lids still spasm up. I looked like I was playing peekaboo with myself. Lol. How do you even protect your eyes without blocking your vision? Sunglasses didn't work. I couldn't go outside the weekend because I wouldn't be able to see. 

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Comments

  • Mikenh
    Mikenh Member Posts: 777
    edited November 2017 #2
    Hello Lily,

    Hello Lily,

    I was looking at Balaclavas at Costco this past Sunday and they had Ski Googles next to them. Here's an example:

    Ski Goggles

    I had eye twitching in the hospital following my surgery for about two weeks but I think that it was environmental. I have ragweed allergies and it was the right season and they continued after I left the hospital. If I didn't close my eyes, they would tear up after a few minutes of a lot of blinking. BTW, I have a balaclava shirt and I will wear it in full Ninja mode when it's cold and/or windy. I might need that ski mask too if I get the Oxaliplatin. I think that there are some models that will fit over glasses too.

  • lhduffer
    lhduffer Member Posts: 90 Member
    Eyelid Twitching

    I also had the eyelid twitching from the oxalyplatin.  Mine subsided later in the day after the infusion.  I am fortunate that I am in Florida so our weather doesn't get that cold to make the problems from the oxaliplatin worse.  You should keep track of how long it lasts and mention it to your oncologist.  I wrote down every side effect and told them about it, not that it changed my course of treatment, but I wanted a record of all of my effects so that I could also make a determination when I felt they were getting beyond a point I could accept.

     

  • beaumontdave
    beaumontdave Member Posts: 1,207 Member
    I never had that side effect,

    I never had that side effect, and being in SoCal, I didn't have to deal with that kind of cold during chemo, but as I have mentioned, the strangest effect for me was an increase of floaties in my eyes. I found myself chasing little "squiggles" to the edge of my sight all the time, and wondering what that meant for my eyes. The good news is that it went away, or at least back to the normal amount................................Dave

  • Trubrit
    Trubrit Member Posts: 5,628 Member
    Oh yes, that happened to me as well

    The only way I could stop the twitching was to sit in a lovely hot bubble bath and keep putting my warm hands over my eyes. Luckily it didn't last but a few days, though I was careful when I went outside. 

    Good luck!

    Tru

  • SophDan2
    SophDan2 Member Posts: 150
    edited November 2017 #6
    2 different things

    Hi Lily,

    Having completed my 12 treatments of Folfox (with Oxy) within the last 3 weeks, I realize that there is a difference between neuropathy and the extreme sensitivity to cold. It appears that your are experiencing what I was concerned about, had my treatments continued into the winter months. Unfortunately, other than stopping the Oxy, you will continue with the sensitivity to cold.

    Now that I am off of the Oxy, the sensitivity to cold has ceased, however, the neuropathy is continueing in my fingertips and toes.

     

    Those ski goggles my be a good look

    Good luck Lily!

  • Lily Flower
    Lily Flower Member Posts: 254
    Mikenh said:

    Hello Lily,

    Hello Lily,

    I was looking at Balaclavas at Costco this past Sunday and they had Ski Googles next to them. Here's an example:

    Ski Goggles

    I had eye twitching in the hospital following my surgery for about two weeks but I think that it was environmental. I have ragweed allergies and it was the right season and they continued after I left the hospital. If I didn't close my eyes, they would tear up after a few minutes of a lot of blinking. BTW, I have a balaclava shirt and I will wear it in full Ninja mode when it's cold and/or windy. I might need that ski mask too if I get the Oxaliplatin. I think that there are some models that will fit over glasses too.

    Wow thanks Mike for the info.

    Wow thanks Mike for the info. I may have to go full ninja too to get through this winter. Hope Mother Nature will be kind to those of us in the Notheast area. 

  • Lily Flower
    Lily Flower Member Posts: 254
    edited November 2017 #8
    lhduffer said:

    Eyelid Twitching

    I also had the eyelid twitching from the oxalyplatin.  Mine subsided later in the day after the infusion.  I am fortunate that I am in Florida so our weather doesn't get that cold to make the problems from the oxaliplatin worse.  You should keep track of how long it lasts and mention it to your oncologist.  I wrote down every side effect and told them about it, not that it changed my course of treatment, but I wanted a record of all of my effects so that I could also make a determination when I felt they were getting beyond a point I could accept.

     

    Hi Ihduffer, yes I also write

    Hi Ihduffer, yes I also write down every side effects I have from every treatment as they aren't the same every time. Mostly my side effects are the worse in the first week after Oxy drip. The weeks after they start to subside until my next treatment start. And the vicious cycle continues. The eyelid twitching was the first. 

  • Lily Flower
    Lily Flower Member Posts: 254

    I never had that side effect,

    I never had that side effect, and being in SoCal, I didn't have to deal with that kind of cold during chemo, but as I have mentioned, the strangest effect for me was an increase of floaties in my eyes. I found myself chasing little "squiggles" to the edge of my sight all the time, and wondering what that meant for my eyes. The good news is that it went away, or at least back to the normal amount................................Dave

    Come to think of it Dave, I

    Come to think of it Dave, I think I might have those floaties too. Happened couple of times where I thought I saw something whooshing by at the corner of my eyes, thinking a fly, but when I look, there was nothing there. Unless it was my cat hair flying around but I know I wasn't seeing things. At least you said it goes away so that's good. 

  • Lily Flower
    Lily Flower Member Posts: 254
    Trubrit said:

    Oh yes, that happened to me as well

    The only way I could stop the twitching was to sit in a lovely hot bubble bath and keep putting my warm hands over my eyes. Luckily it didn't last but a few days, though I was careful when I went outside. 

    Good luck!

    Tru

    Ahh the bubble bath, I might

    Ahh the bubble bath, I might just go have one later. I'm off this week so I better soak up all my pampering before going back to work next week. :)

  • Mikenh
    Mikenh Member Posts: 777

    Wow thanks Mike for the info.

    Wow thanks Mike for the info. I may have to go full ninja too to get through this winter. Hope Mother Nature will be kind to those of us in the Notheast area. 

    We're supposed to get hit

    We're supposed to get hit with the Polar Vortex next week. I got a set of Bison Down gloves and an EMS Techwind shirt. I like to do layers when it's cold so that you can peel some off when you get inside. Just remember: if you go full ninja, be prepared for strange looks when you walk into a bank.

  • Lily Flower
    Lily Flower Member Posts: 254
    SophDan2 said:

    2 different things

    Hi Lily,

    Having completed my 12 treatments of Folfox (with Oxy) within the last 3 weeks, I realize that there is a difference between neuropathy and the extreme sensitivity to cold. It appears that your are experiencing what I was concerned about, had my treatments continued into the winter months. Unfortunately, other than stopping the Oxy, you will continue with the sensitivity to cold.

    Now that I am off of the Oxy, the sensitivity to cold has ceased, however, the neuropathy is continueing in my fingertips and toes.

     

    Those ski goggles my be a good look

    Good luck Lily!

    Hey Barry and thanks! hope

    Hey Barry and thanks! hope you're enjoying your life post treatment. Like I had told you before that your timing is perfect, ended right before the holidays. 

    You're so right about the neuropathy and the sensitivity to cold that we feel from Oxy. My eye twitching was definitely from the cold. That Friday as I walked out of the clinic, I also felt pins and needles going up from my legs to my rear. No puns intended but it was a pain in the a$$. Lol! The last couple of days my eyes haven't twitched.

    So far I haven't felt any numbness at my fingertips and toes. However, I do feel the sensation going through my fingers whenever I tap my fingers on hard surface. 

  • Lily Flower
    Lily Flower Member Posts: 254
    edited November 2017 #13
    Mikenh said:

    We're supposed to get hit

    We're supposed to get hit with the Polar Vortex next week. I got a set of Bison Down gloves and an EMS Techwind shirt. I like to do layers when it's cold so that you can peel some off when you get inside. Just remember: if you go full ninja, be prepared for strange looks when you walk into a bank.

    Oh great and I'm going back

    Oh great and I'm going back to work next week. :/ I also like layering instead of wearing one bulky sweater.

    And another lesson I learned a long time ago about when you're in the bank is that never call out your friend named Rob, you'll get some nervous looks! 

  • PamRav
    PamRav Member Posts: 337 Member
    Had twitching

    during the actual infusion.  It was to the point that I️ couldn’t read or play on my iPad.  After the infusion finished it went away but would resurface at the strangest times ( no correlation to cold or anything else).  I’m 8 months past the oxy and happy to say it’s gone.  No more twitching 

    pam 

  • Csuc02grad
    Csuc02grad Member Posts: 6
    edited November 2017 #15
    Wife had small muscle twitches too

    Half way through her treatment on 11/27 Monday she had the eyelids twitching along with chest and some thighs. The weirdest paras that she had trouble talking sound marble mouthed or like she just woken up. 

    The RN and DR where surprised. They said this side effect is so rare they couldn't even list a percentage of people who get it. Sounds to me like several folk here do. 

    The twitching G went away by Tuesday. 

     

    Good luck LILY

     

  • SophDan2
    SophDan2 Member Posts: 150

    Hey Barry and thanks! hope

    Hey Barry and thanks! hope you're enjoying your life post treatment. Like I had told you before that your timing is perfect, ended right before the holidays. 

    You're so right about the neuropathy and the sensitivity to cold that we feel from Oxy. My eye twitching was definitely from the cold. That Friday as I walked out of the clinic, I also felt pins and needles going up from my legs to my rear. No puns intended but it was a pain in the a$$. Lol! The last couple of days my eyes haven't twitched.

    So far I haven't felt any numbness at my fingertips and toes. However, I do feel the sensation going through my fingers whenever I tap my fingers on hard surface. 

    You have the right attitude

    I am feelinbg better with each day! The tase buds are slowly coming back and the cold is a non-issue at this time.

    You must live somewhere cold, I'm north of Boston, where it has been pretty cold already.

    A sense of humor is very helpful when dealing with our circumstances. Keep warm and remember that the cold sensitivity will, subside when treatment ends. the neuropathy feelings that I am experiencing are tolerable, with the hope that they will eventually lessen over time.

     

    Take care

  • Mikenh
    Mikenh Member Posts: 777
    SophDan2 said:

    You have the right attitude

    I am feelinbg better with each day! The tase buds are slowly coming back and the cold is a non-issue at this time.

    You must live somewhere cold, I'm north of Boston, where it has been pretty cold already.

    A sense of humor is very helpful when dealing with our circumstances. Keep warm and remember that the cold sensitivity will, subside when treatment ends. the neuropathy feelings that I am experiencing are tolerable, with the hope that they will eventually lessen over time.

     

    Take care

    I was wondering if that was

    I was wondering if that was the North End in your picture.

  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    Twitching

    Mine did the same and also the eyeballs twitched as well.  Scared the heck out of me, they told me that was one of the side effects but they never gave me a solution.  It was very annoying.  Hope that it gets better for you.  This treatment has some weird side effects and it seems to me the doctors don't tell you all of them.  Wishing you well.

    Kim

  • Lily Flower
    Lily Flower Member Posts: 254
    edited December 2017 #19
    PamRav said:

    Had twitching

    during the actual infusion.  It was to the point that I️ couldn’t read or play on my iPad.  After the infusion finished it went away but would resurface at the strangest times ( no correlation to cold or anything else).  I’m 8 months past the oxy and happy to say it’s gone.  No more twitching 

    pam 

    My twitch was only when I

    My twitch was only when I exposed to cold air right after I finished my treatment. After I got home, no twitching. 

  • Lily Flower
    Lily Flower Member Posts: 254

    Wife had small muscle twitches too

    Half way through her treatment on 11/27 Monday she had the eyelids twitching along with chest and some thighs. The weirdest paras that she had trouble talking sound marble mouthed or like she just woken up. 

    The RN and DR where surprised. They said this side effect is so rare they couldn't even list a percentage of people who get it. Sounds to me like several folk here do. 

    The twitching G went away by Tuesday. 

     

    Good luck LILY

     

    Thanks Csuc! My twitching

    Thanks Csuc! My twitching also lasted one day. Thank goodness because I sure don't want people to misintrepret me of winking at them. Lol 

  • Lily Flower
    Lily Flower Member Posts: 254
    edited December 2017 #21

    Twitching

    Mine did the same and also the eyeballs twitched as well.  Scared the heck out of me, they told me that was one of the side effects but they never gave me a solution.  It was very annoying.  Hope that it gets better for you.  This treatment has some weird side effects and it seems to me the doctors don't tell you all of them.  Wishing you well.

    Kim

    Oh my goodness! My eyeball

    Oh my goodness! My eyeball didn't twitch. It would've scared the crap out of me too. It was annoying as it happened while I was walking and couldn't see. 

    Thanks Kim. As soon as I got home it went away.