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Eyelids Twitching
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Nov 29, 2017 - 5:10 am
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. |
Joined: Oct 2017
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:
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.
Joined: Jul 2017
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.
Joined: Oct 2017
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.
Joined: Jul 2017
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!
Joined: Nov 2017
[[When I left the clinic and
[[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-
Joined: Jul 2017
Yup my eye lids burn when I
Yup my eye lids burn when I tear up. Don't chop onions! Lol
Joined: Oct 2015
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.
Joined: Jul 2017
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.
Joined: Aug 2013
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
Joined: Jul 2017
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.
Joined: Jan 2013
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
Joined: Jul 2017
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. :)
Joined: Jul 2017
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!
Joined: Jul 2017
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.
Joined: Jul 2017
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
Joined: Oct 2017
I was wondering if that was
I was wondering if that was the North End in your picture.
Joined: Jul 2017
Gloucester, but in front of the best Italian bakery
Gloucester, but in front of the best Italian bakery
Joined: Jul 2017
I love Italian pastries.
I love Italian pastries. Cannoli and spumoni are two of my favorite!
Joined: Jul 2017
I love Italian pastry too
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!
Joined: Oct 2017
That place is wildly popular
That place is wildly popular with locals and tourists. The lines can be rather insane at times.
Joined: Jul 2017
OMG I would never leave!
OMG I would never leave! Thanks! Definitely on my bucket list. :D
Joined: Jul 2017
Actually I'm below you. I'm
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
Joined: Jul 2017
Moxie
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
Joined: Jul 2017
Haha so true about being too
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
Joined: Jan 2017
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
Joined: Jul 2017
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.
Joined: Jul 2017
Great to hear Pam
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.
Joined: Nov 2017
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
Joined: Jul 2017
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
Joined: Feb 2009
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
Joined: Jul 2017
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.
Joined: Jan 2013
Eyeball twitches
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
Joined: May 2013
Lily
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
Joined: Jul 2017
Hi neighbor! I have a cousin
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. :)
Joined: May 2013
That's funny!
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!!
Joined: Jul 2017
Hey Ruth, it's funny how a
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. :)
Joined: Dec 2017
Second infusion Monday
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.
Joined: May 2013
I know you are asking Lily
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!
Joined: Dec 2017
Thanks. I also get the
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.
Joined: Feb 2009
Sickness
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
Joined: Jul 2017
Hi Abita, Welcome to the
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!
Joined: Dec 2017
Capecitabine
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.
Joined: May 2013
abita
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.
Joined: Jul 2017
Capecitabine is the pill form
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. :)
Joined: Dec 2017
I am hoping not to lose much
I am hoping not to lose much hair. Sounds so vain when there are so many bigger issues to think about.
Joined: Oct 2017
When I was on Neo-Adjuvant
When I was on Neo-Adjuvant Xeloda, I had the opposite problem. Hair came in pretty strongly and I couldn't shave it close.
Joined: Jan 2013
Hair loss
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
Joined: Dec 2017
What were you taking? My
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.
Joined: Jan 2013
Not to scare you, but
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.
Joined: Dec 2017
Sorry, but worth it since you
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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