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Eyelids Twitching

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

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. 

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

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.

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

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. 

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

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's picture
Lily Flower
Posts: 253
Joined: Jul 2017

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! 

Nazareth
Posts: 88
Joined: Nov 2017

[[When I left the clinic and as soon as exposed to the cold air, my eyelids twitched and fluttered.]]

Yup- my eyes started stinging badly when exposed to the air after just my first treatment- also they watered constantly- but that went away after a few days- around 5 or so- OPne thing I did was cup my hands over my mouth and eyes, and breathed out warm air which helped warm the eyes some- it helped a little- looked funny, but helped

[[when you're in the bank is that never call out your friend named Rob, you'll get some nervous looks!]]

Yeah, I've gotta ask my friend 'stick'em up' to stay home when I go banking-

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

Yup my eye lids burn when I tear up. Don't chop onions! Lol

lhduffer
Posts: 86
Joined: Oct 2015

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.

 

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

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. 

beaumontdave's picture
beaumontdave
Posts: 1038
Joined: Aug 2013

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

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

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. 

Trubrit's picture
Trubrit
Posts: 5139
Joined: Jan 2013

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

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

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. :)

SophDan2's picture
SophDan2
Posts: 142
Joined: Jul 2017

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's picture
Lily Flower
Posts: 253
Joined: Jul 2017

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. 

SophDan2's picture
SophDan2
Posts: 142
Joined: Jul 2017

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's picture
Mikenh
Posts: 777
Joined: Oct 2017

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

SophDan2's picture
SophDan2
Posts: 142
Joined: Jul 2017

Gloucester, but in front of the best Italian bakery

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

I love Italian pastries. Cannoli and spumoni are two of my favorite! 

SophDan2's picture
SophDan2
Posts: 142
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Bubba-Rum with the filling are my favorite. If you ever get to Boston, go to Mike's Pastry in the North End, they have the best pastries I have ever tasted!

Mikenh's picture
Mikenh
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Joined: Oct 2017

That place is wildly popular with locals and tourists. The lines can be rather insane at times.

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

OMG I would never leave! Thanks! Definitely on my bucket list. :D

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

Actually I'm below you. I'm in NYC. So we have pretty much the same weather forecast. It's funny...I never liked wearing socks but since chemo started in September and rolling into cold days, I bundle up like Randy from the Christmas Story. Lol

Speaking of the pic, what is that bottle you're holding? :D

SophDan2's picture
SophDan2
Posts: 142
Joined: Jul 2017

I am holding a bottle of Moxie, which I love the taste of (acquired taste, from what people who don't like it say).

 

I would always rather say that I'm too warm than I'm too cold Sealed

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

Haha so true about being too warm than too cold!

i don't remember seeing moxie being sold at my local supermarket. I hear it's a bit on the bitter side. i might try it if I see it. I have tolerance for bitterness. I've eaten those Asian bitter melon and actually like it. :D

PamRav's picture
PamRav
Posts: 273
Joined: Jan 2017

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 

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

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

SophDan2's picture
SophDan2
Posts: 142
Joined: Jul 2017

Like you, I am post treatment and still feel the numb fingertips and toes; I am hoping that the feeling will eventually go away with time.

Csuc02grad
Posts: 6
Joined: Nov 2017

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

 

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

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 

Annabelle41415's picture
Annabelle41415
Posts: 6470
Joined: Feb 2009

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's picture
Lily Flower
Posts: 253
Joined: Jul 2017

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. 

Trubrit's picture
Trubrit
Posts: 5139
Joined: Jan 2013

Oh Kim! I had forgotten about that side effect. My eyeballs would jerk around something chronic. It looked like I was on drugs. Well, I was, but not 'those' kind of drugs. 

Tru

Ruthmomto4's picture
Ruthmomto4
Posts: 659
Joined: May 2013

my husband had that it went away quickly though. I see you are in NYC we are in CT he is hooked up to his chemo right now and had a lot of trouble this morning breathing in the cold And his eyes were a mess. I know he is hoping for a warm winter 

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

Hi neighbor! I have a cousin named Ruth and lives in CT but she's a mom to 3. :D

Just glad that this is a short-lived effect. I can't imagine having twitching eyes throughout the whole treatment. I always dread the week after my drip which is always rough with the overall malaise and nausea. I hope your husband is feeling better. :)

Ruthmomto4's picture
Ruthmomto4
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I definitely have 4 though, so funny not too many of us with what I refer to as my old lady name lol I hate to jinx it but he isn't tired or nauseous, I keep waiting thinking it has to happen but so far so good. The cold sensitivity is really bothering him this time. Finding something to drink besides warm water is a challenge. We are about to get a stretch of cold soon so i hope you are not due for your oxi anytime soon! Take care Lily!!

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

Hey Ruth, it's funny how a lot of old names are making a comeback. I used to think Emma was such an antique moniker, now all the little kids are named Emma. Lol Although I have to admit before some of the old names started to trend, I always liked Amelia, Clara, Sophia. :)

abita's picture
abita
Posts: 778
Joined: Dec 2017

How long have you had nausea? I am getting my second round Monday. I did not get nauseous after. Do you get the anti nausea medicine in the drip? Thanks for the tip on the eyes. Being the first week, I didn't have the cold issue much, but did a couple of times.

Ruthmomto4's picture
Ruthmomto4
Posts: 659
Joined: May 2013

But my husband not gotten any nausea, he gets anti nausea meds and a steroid in his infusion and takes steroids and zofran after. Hopefully you won't get any either. His first round really didn't give him much cold sensitivity issues, it hit him good the second and has gotten worse with each. It usually eases by day 4 from disconnect and after that it comes and goes. Good luck!

abita's picture
abita
Posts: 778
Joined: Dec 2017

Thanks. I also get the steroid and anti nausea in infusion. I haven't had to take it yet, but I have Ondansetron pills for home. Yeah, I figure the cold and numbness will hit after the 2nd and onward.

Annabelle41415's picture
Annabelle41415
Posts: 6470
Joined: Feb 2009

Everyone responds different to treatment but most of it includes some anti-nausea medication, plus they can give it to your orally.  Hope you continue to do well, Abita.

Kim

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

Hi Abita, Welcome to the forum! Before my drip begins, they give me Akynzeo to combat the nausea. It lasts about 24 hours. I also take Capecitabine (Xeloda) at home for 2 weeks and I get nausea from it. My oncologist prescribes anti-nausea medicine for me but I don't always take it because I don't want to be constipated. It is somewhat tolerable so I just suck it up. side effects are different for everyone. So you may not get the eye twitching, but if you do get it, just know that it doesn't last long. Good luck to you with all your treatments!

abita's picture
abita
Posts: 778
Joined: Dec 2017

I don't get capecitabine, so maybe that is why. My at home infusion is the 5fu, I think. I get the device that administers it when I finish the in hospital treatment. I wear it for 46 hours, then go back to have it removed. My anti-nausea in the drip lasts for 3 days. I have a "cousin" of it in pills at home, just in case. 

This forum helps a lot. I have a good support system, but they can't help me with my fears and questions the same as people who are going through it or who have been there. 

Ruthmomto4's picture
Ruthmomto4
Posts: 659
Joined: May 2013

you are getting what my husband is the odanestron is Zofran my husband takes it even if he isn't feeling nauseous  until about Wednesday just to be safe. He gets connected on Thursday and Saturday morning he starts the zofran he also takes oral steroids Friday and Saturday. He said he feels a little uneasy in the morning so eating helps as well. I hope you continue to feel well!

ps

your cat in the picture has beautiful colors! I am a huge animal lover. 

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

Capecitabine is the pill form of 5FU. I chose the pill regimen for the convenience. I don't want to go back after 48 hours to disconnect the pump. Also if I do get a reaction or too sick I can just stop taking the pill, not have to worry about rushing to the ER. The pill also gives you less side effects of mouth sore, hair loss, nausea, diarrhea and constipation. I take capecitabine for 2 weeks then 1 week off. On my week off I have to call the CVS Specialty for my next cycle refill and they deliver to my house. 

This is a wonderful forum. We get advice and support from one another. We are there for each other. :)

abita's picture
abita
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I am hoping not to lose much hair. Sounds so vain when there are so many bigger issues to think about.

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

When I was on Neo-Adjuvant Xeloda, I had the opposite problem. Hair came in pretty strongly and I couldn't shave it close.

Trubrit's picture
Trubrit
Posts: 5139
Joined: Jan 2013

I lost most of the hair from my body. I kept a few patches on my legs, which looked totally weird. About 90% of my head hair fell out, so I ended up looking like Gollum. No kidding!  Thats when I shaved my head, and the picture you see was taken  (from a video) the day I shaved it off. 

Before my hair fell out, I was of the attitude 'It won't matter', but when I saw it falling out in clumps, I was devestated. It was a real gut punch. I got over it though, and rocked the shaved head. 

My hair grew back curly, then fell out and grew in dead straight. I've never had dead straight hair before. But alas, I'll take straight hair and life. 

Tru

abita's picture
abita
Posts: 778
Joined: Dec 2017

What were you taking? My oncologist said for mine, leucovrin, oxiplatin, and 5fu that i will lose some hair, but since my hair is thick, should not get to that point. He also said he doubts I will lose eyelashes or eyebrows. But like you, I feel if it does, I will remind myself that the only thing that matters is surviving. I just had a similar talk aobut my stomach scar. I don't care. Don't love it, but my focus is on getting passed this and living a healthy, happy, long life. 

Trubrit's picture
Trubrit
Posts: 5139
Joined: Jan 2013

Here is a picture of me during treatment (FOLFOX with 5FU pump).  So yeah, it doen't happen to everyone, but I went from a nice thick head of hair, to a Gollum like do. 

Gone tomorrow

abita's picture
abita
Posts: 778
Joined: Dec 2017

Sorry, but worth it since you made it through. The Saturday before i was admitted to the hospital, I told my hairdresser that I felt my hair was finally long enough. How sadly ironic. It is just above my waist and a beautiful shade of red. The worst was when I was in the hospital and nurses kept telling me they loved my hair. I could only think, "for now", when they said it. Did you go the wig route. I am not sure that I will. I don't even think about it that much though. Right now my thoughts are only focused on praying that the lesions shrink enough in the first 4 rounds to be removed with surgery. My doctors suggested I only think about one step at a time. While I do know and think about the whole picture, keeping with the one step really seems to help me keep a positive attitude.

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