Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

Plaqyinuil-- bad floaters scared

Oct 09, 2015 9:01 PM

I went to swipe at a bug in the car today and even rolled a window down for it to get out, in the bathroom just now in intense light I thought I was having floaters and seeing bugs at the same time but I realized they're all floaters-- it's making me panic --it seems like they're exploding from everywhere like in the test the eye dr performs when you take Plaquinyl. I had a test under a year ago and was fine but since then had plugs put in my eyes because they are so dry and now this-- my eyelashes are falling out its really scary-- I was supposed to start lo dose doxycycline for meibomian gland dys dysfunction but can't do to the colitis. I turned off the lights and am trying to be calm and not freak out I know I should go to the eye doctor but has anyone heard of this happening I'm not gonna take my plaquyuinyl until I see the doctor--I wonder if it is damage if it can go away or be reversed if I stop the clock when I'llif it is damage can it go away if I s

Oct 09, 2015 9:02 PM

Shoot that sent without any editing I'm too tired to type and Siri can't interpret, sorry. O

Oct 09, 2015 9:14 PM

Marsemouse, I'm on Plaquenil for my sjogrens. I had some floaters before I started on it, and the doc said I have the beginning of cataracts. Maybe that's all yours is. I did have a very strange episode about 2-3 weeks ago, where I got a sudden sharp pain inside my right eyeball. It lasted a few minutes then went away. I had a slight headache with blurred vision about an hour then that went away too. Nothing since. I'm also losing my eyelashes like crazy! I've been debating going back for a recheck because I can't stand any bright lights in my eyes now. I hope you find out what's causing your floaters soon. Praying nothing serious! Hugs. πŸ™πŸŒΌ

Oct 09, 2015 9:15 PM

I'm too hurt to type, how do I even explain that to anyone. It's so many things, the pinched neck nerve and shredded shoulder and stabbing thumb bone pain and who even cares but it's all I can pay attention to. My eyes got so bad I still had to almost beg for these stupid plugs that don't work anyway because it's the meibomian gland. I snapped at the car guy but caught myself and corrected, it's intensely hard sometimes. I'm pissed because I'm hurt and I don't want to have to stop to explain it nor could I or would it be effective if I did anyway.

Oct 09, 2015 9:16 PM

Thank you Flappys I can't stand it my eyes bother me so much it affects everything. This could be cataracts?? Oh no.... Sigh.

Oct 09, 2015 9:17 PM

The eyelashes---it's awful. I remember when I was able to wear eye make up and feel better about my appearance :(

Oct 09, 2015 9:26 PM

I don't want eye damage. It's a big warning Plaquenyl if you start having vision disturbances. I've been crying excessively maybe that's why -- I am only saying because I'm worried I may have actually cried my eyes out. Light is unbearable. Oh well I've always preferred night. I wish my emergencies would stop happening on weekends.

Oct 09, 2015 9:36 PM

It's on to rant... Better to let it out! Cataracts usually take years before they require surgery, and the surgery is really easy to handle. My brothers had both eyes done and his vision is better now than ever before. For me, the eyelashes that keep falling out, my eyes burning and staying dry, those are very irritating. My eyes actually burn and itch when they're too dry. I use moisture drops all day long. I'll have to check into the meiobian gland dysfunction; not familiar. ((Hugs))! πŸ™πŸŒΌ

Oct 09, 2015 11:20 PM

Thanks Flappys. Mine burn too
no matter what. I'm averaging two boxes of (near $20 each) boxes of Systane preservative free drops a week and use the gel and ultra plus ointment and compresses at night. I feel a different kind of tired of this. I mean I know I'm strong and I think I have good qualities and am inherently okay but this is just too tiring the way it's worked out. I keep doing the thing and seeing the person and trying and keeping on because that's what we do but I'm just that's all.

Oct 10, 2015 12:45 AM

Marsemouse, I'm sorry you are in the state you're in. I can certainly understand your fear and frustration with it all. I'm sitting there beside you, you have my shoulder.. Go ahead, lean, have a cry, I'm her to give you {{{Hugs}}} and support so you don't deal with this alone. Try to take some deep breaths and slow your heart rate, relax. No matter what happens, it's going to be in. We will all be here to help you get through. You're in my prayers. I don't feel sleep coming to me anytime soon even after almost 36 hours... I'll keep you company if you need me to. Hopefully you will be able to lay your head down and rest. πŸŒ»πŸ™πŸ»

Oct 10, 2015 9:22 AM

Marsemouse, I rotate my eyedrops (Systane) during the days i have extreme dryness, with Refresh. It seems thicker and more nourishing; doesn't dry out as fast. I haven't seen the doc to tell her, but I had to use it when I ran out and the stores were closed; I had it from before my dx of Sjogrens. Coincidentally I used my Systane two hours ago and my eyes are already burning and dry.

I understand the being tired of it all. Like AlwayZ suggested, try to relax. Try doing something else to distract you. Have you been to the sjogrens foundation website? I paid to be a member because it lets you access more, but there's lots of good suggestions for relieving symptoms. I want to say there's an eye mask you can sleep in that helps hydrate. I have added much trouble with my nose mouth and throat being dry, if not worse at times. There's suggestions for that too. I'm here for you if you need an ear. (((Hugs))) πŸ™πŸŒΌ

Oct 10, 2015 10:10 AM

((Hugs)) to all y'all! I just came on to mention an eyedrops I use. I have always had very dry eyes, then I was put on medication after medication that dried my eyes out further they put me on Restasis. Unfortunately, all that did was make my eyes burn constantly. It never did anything good for my eyes. So I stopped that and tried pretty much every eyedrop out there. The 2 that worked the best for be are: Rohto Hydra and Thera Tears Dry Eye Therapy (individual packets). I love Rohto Hydra because it's VERY cooling. Thera Tears are not cooling, but they seem to be a thicker solution and very gentle. Hope this helps a little πŸ˜•

Oct 10, 2015 1:40 PM

Alwayz you made me cry but in a soothing way thank youπŸ’• Flappys and Amie I had the same problem with restasis and so has anyone I've spoken to who has used it, I think it's a joke. I am definitely going to try Refresh in between now and Amie someone else recently mentioned Rohto Hydro so I'm going on Amazon after I post and ordering some. I hope the iPhone app update is before the holidays because I'm really depressed and would like to be able to Private Message. Thank you so much for the help and suggestions. Feels like I can't keep doing it all for myself sometimes.

Oct 10, 2015 1:45 PM

Flappys my mouth feels hot and my tongue is swollen πŸ˜”. I thought it was from grinding my teeth but it's all of the other dryness and heat I guess. The floaters are still bad and I have to drive to pick up my car from being serviced--just hope I don't start rolling the windows down for imaginary gnats like a crazy person.

Oct 10, 2015 1:46 PM

Sorry--I'm in a loaner car if that didn't make sense--and I meant I hope we get an update for this app on iphoneπŸ’•

Oct 10, 2015 4:21 PM

I'm on plaquenil for lupus and sjogren's syndrome. I have floaters on occasion, however the episodes of flashing lights are really scary at times. It is like a fireworks lightening show going off in my vision sometimes causing a temporary "white-out" in my vision. The "white-out" lasts seconds, sometimes it lasts minutes. I have a dilated exam every 6 months, and so far, my retina is stable I have no toxicity caused by the plaquenil.

Due to the sjogren's, I have almost zero tear production. The pain, burning, and mucus production was so bad that my ophthalmologist inserted plugs in my lower tear ducts to help. I'm also on Restasis 2x daily, as well as using Celluvisc (very thick viscous eyedrops), and Soothe XP emollient drops every 2-4 hours. I also use a lubricant ointment at night. This has had an improvement in my symptoms.

Good luck πŸ€ and God Bless to us all πŸ™
Peace ✌, Love πŸ’š, and Frogs 🐸

Oct 10, 2015 7:34 PM

Thank you Shiovan! So the white out episodes aren't considered cause for alarm? I thought the exploding floaters thing was an emergency, it really is quite scary. It feels like something eroded in my vision I can't describe it well. I've had floaters for years but this was like they were bursting at me from all directions just like in the exam but as if all the little lasers are flashing at the same time. I didn't take the Plaqyinyl last night, it really scared me --thank you so much for telling me about this. I got the plugs too, wish they worked at all. Thanks again and oh especially Frogs🐒 And this guyπŸ’.

Oct 10, 2015 7:39 PM

The lights ? are all black though, like floaters with tiny strings attachedπŸ˜• Like gnats. And they're everywhere I look in any light.

Oct 10, 2015 7:41 PM

How about turtles 🐸
πŸ™Š oh well they're both green.

Oct 10, 2015 7:41 PM

@marsemouse-- I was very concerned and I contacted my ophthalmologist office immediately and had a dilated exam. Once he confirmed that there were no retina holes or tears, and, no toxicity damage from the plaquenil, I relaxed a bit. I still have a dilated exam every 6 months to make sure that my retina remains stable. If I get any NEW symptoms, he will get me in sooner. Stay strong!

Peace ✌, Love πŸ’š, and Frogs 🐸

Oct 10, 2015 7:49 PM

@marsemouse -- Contact your ophthalmologist and them get you in for a dilated exam.
BTW:
I πŸ’š turtles 🐒 and Frogs 🐸.
Green is my favorite color too πŸ€πŸΈπŸ’πŸ’š

Oct 10, 2015 8:50 PM

Ok I'll call my opthamologist Monday morning. I wish he was a nicer doctor--he finally started paying attention but he's not friendly by any stretch. He likes to do things "in steps" which meant waiting five years and me ready to switch doctors before he finally tried punctal occlusion (eye plugs)--cost $800. Insurance paid under $200 and Anthem probably sent my ex husband a greeting card along with his copyπŸ˜‘. Just what I want before a thyroid biopsy!! I don't get a dilated exam Shiovan--it's a special exam for (I think) peripheral vision--you look into this light box with your face pressed up against it and have to press a clicker each time you see a red dot as they flash. I was told it's a standard test for anyone on Plaquinyl. I'm glad you like toitles tooπŸ’πŸΈπŸπŸŒ΄πŸ’š

Oct 10, 2015 8:58 PM

@shiovan--hopefully he will be able to do a dilation test and I won't have to go through that whole other process since this is so weird. He said he could see the floaters once, I didn't even know they were visible objectively.

Oct 10, 2015 9:01 PM

I mean to the dr/-thank god or whoever you thank we can forgive each other our brain scrambles--I hopeπŸ˜•πŸ™πŸΈβœ¨

Oct 10, 2015 9:09 PM

{{{Alwayz}}} I hope you are sleeping peacefullyπŸ™πŸŒ πŸ’–

Oct 10, 2015 10:46 PM

Thanks to everyone who has suggested other methods!! Have a blessed night of sleep (or day on the other side of the world)! πŸ™πŸŒΌ

Oct 11, 2015 4:53 AM

I had this sleep paralysis thing happen and now it's 3am and I'm afraid to fall back to sleep. This used to happen years ago-- I thought it was from a medication but it's happened since and now again. I'm aware that I'm not fully awake but I can't breathe and feel like I'm going to suffocate and have to will myself to get fully conscious - I'm sorry to be so dark but they are terrifying episodes.

Oct 11, 2015 5:52 AM

@marsemouse- you are not being paranoid or "dark". You have concerns that need to be addressed and investigated by your physician(s) to determine the cause and find the treatment. We (This online community) are here to listen and support each other. Besides, who understands what you are going through better than us?

The test box with the red dots and the clicker button is called a visual field test (I have that test every 6 months also). A dilated exam is when the physician uses eyedrops to dilate your pupils so he can examine your retina for toxicity, hole/tears, and other abnormalities.

Additionally, I would speak to my primary care physician and ask for a referral so you can have a sleep study, in order to get to the bottom of these episodes. Maybe it is sleep apnea or another sleep disorder. One thing is certain, your body needs rest. The absence of proper rest is one catalyst in the deterioration of a person's health.
God bless!

Oct 11, 2015 11:14 AM

Marsemouse, could one of your meds be the cause of these speedup episodes? I had a similar response following the use of versed and stadal for surgery. I'm with Shiovahn, you needed to get in touch with your doc tomorrow. Hugs and prayers for you! πŸ™πŸŒΌ

Oct 11, 2015 12:47 PM

Thank you Shiovan. The visual field test--that's the one. I was supposed to do a sleep study years ago but never got around to it. I forget to mention it because so much is going on but I do need to bring it up to my doctor. I've had problems sleeping since childhood and it's probably taken a toll. Flappys -I thought I was out of the woods when I stopped one of my meds about a year ago--it was happening frequently and then stopped--until last night πŸ˜•. What's difficult is it has me afraid to fall asleep because I am afraid I will not be able to force myself awake the next time it happens. It feels like it takes an enormous amount of will to get my body awake and breathing but inside I'm desperate and trying to make myself speak out loud.

Oct 11, 2015 12:53 PM

I did tell a psychologist last year and he didn't believe I actually stopped breathing-- I don't know why it was necessary for him to prove but it didn't help either way and just felt invalidating. I hate to say but I'd like him to experience it and then tell me whether or not he could breathe. I thought we secreted a chemical that partially paralyzes during sleep so we don't act out dreams but maybe I have that wrong. I know empirically I can't breathe or speak when it's happening.

Oct 11, 2015 1:30 PM

Look up all your meds on www.drugs.com.

See if there are any with this type of side effect. I'm thinking it may be oversensitivity to a med or oversedation effects of a med. Mine turned out to be allergic reaction.

You could also call your pharmacist and discuss it with them. Ask if there's anything you're on that might cause this. That may actually be better and faster. I understand the fear of it happening again. My doc specifically instructed me not to mix my anxiety meds, Tranxene, with my pain med, Tramadol. He said it would oversedate me. Be careful, but try and get some sleep. Praying it won't happen tonight. πŸ™πŸŒΌ

Oct 11, 2015 2:03 PM

Last night all I took was 6 mgs of Doxepin--it worked well for sleep for awhile but seems to have lost effect. It's a new low dose pill just for sleep not the psychiatric dose, called Silenor. Plus I used some powdered magnesium calcium. I think I'm just overloaded and maybe weak from stress. Thanks for the prayers Flappys, they really do help! I hope you're doing well FlappysπŸ’•πŸ’•

Oct 11, 2015 2:23 PM

Today is a good day Marsemouse... I woke up, I can breathe on my own, I can walk without pain today, and my mind is clear enough to pay out bills. Thank the Lord! πŸ™πŸŒΌ

Oct 11, 2015 5:48 PM

Yay Flappys! You deserve every good day βœ¨πŸ’–

Oct 11, 2015 9:25 PM

Thanks Marsemouse, but so does everyone here. I pray some doctor somewhere will truly take an interest in fibro and find a way to give better relief, or better yet put it in remission or stop it all together. Wouldn't that be an awesome blessing!πŸ™πŸŒΌ

Oct 12, 2015 10:59 AM

Shiovan thanks for helping me through the weekend--on my way to opthamologist.

Oct 12, 2015 7:37 PM

@marsemouse- no problem and best of luck at the ophthalmologist today.
@FlappysLady81- congrats on having a good day today

Best of luck and God bless to all of us!

Oct 12, 2015 8:31 PM

Apparently this is age related (grr), but thankfully nothing dangerous. He said to watch for bright flashes or shadows if it's Plaquinyl toxicity. He said it's not unusual but I haven't heard of anyone except Shioban to have the symptom. He dilated and the retina is okay but I hope he's right that it "calms down". I guess they're proteins from some layer that detaches in back, I can't remember now. Resume Plaquinyl, tragedy averted. Now the PVC's are out of control. I feel like I'm breaking down piece by piece. I don't want to, if anyone on high is listening. I second Best of lunch (I'll leave that auto correct) and God bless to all of us. And I'll post in the thread but whoever wrote about depression, I get in some severe states at times, you are definitely not alone.

Oct 12, 2015 9:35 PM

Marsemouse, I'm so glad to hear this! I now you're relieved too. Relax with some deep breathing and soft music. And may God bless you with a very peaceful night's sleep! (((Hugs))) & πŸ™‹5! πŸ™πŸŒΌ

Oct 13, 2015 12:02 PM

Marsemouse, the body does secrete a substance that is supposed to prevent your body from moving while you are in REM sleep. I know a few ppl who suffer from sleep paralysis, which is when the consciousness wakes up before the paralysis wears off. It's a horrible feeling, I've been told. Often too, the brain gets mixed up and for a few moments the dream world invades reality and the sufferer sees terrifying shadows and shapes in their room and they are paralyzed and can do nothing but watch and wait.

I'm wondering if sleep paralysis might explain why you feel as though you can't breathe. Unfortunately, as far as I know, there is no cure or treatment for it. πŸ˜•

Oct 13, 2015 4:13 PM

@marsemouse- I am so glad that your visit to the ophthalmologist revealed nothing dangerous with your eyes. Thank God! Each piece of good news that we get is a small victory in our daily struggle with our health. Hopefully you can get a referral for a sleep study to determine the cause of your sleep disturbances.

Good luck, Good Rest, and God Bless πŸ˜‡

Oct 13, 2015 6:50 PM

It is bar none the most terrifying experience I've ever had. It's messed me up because now I have so much anxiety about falling to sleep. I told the ex if he ever saw me appear to be even the slightest bit agitated to please please wake me up, when it was happening frequently. (He didn't but that's another story.) I'm trying to figure out if I can attach a bell to my wrist or something--don't laugh (too long). I wouldn't be able to ring it anyway. I googled and there's at least more info about it now, including what you said Amie. It happened again the other night but I wasn't paralyzed or suffocating and there is a distinct difference. I don't know why that psychologist wanted to disprove it but oh well. Thanks Shiovan you cheer me up!

Oct 13, 2015 7:00 PM

I know I can't breathe during those episodes, they are the worst. The other night was an all new sleep disturbance but just visual and terrifying. I know if I'm unable to wake myself one of these times in that state of paralysis I will die like that, I don't care who says different. My respiration must go perilously low. I would be a good candidate for a sleep study if they could ever get me to sleep!

Oct 13, 2015 7:17 PM

How weird is it that you can see detached proteins in your own eye. I guess I'll have to make peace with them. The dr said he's heard the description, floaters with tails.

Oct 13, 2015 8:42 PM

Marsemouse, that's a new one for me... Tails? Really? I have a big black floater in my right eye and the left has several small grey ones.

Oct 13, 2015 9:38 PM

Normally they're little black spots Flappys-I'm used to those. This obstructed my vision there were so many from all directions, and had what looked like tiny threads--kind of like a swarm of teeny black sperm. I was relieved he knew what I meant but asked what exactly I was seeing --he said some protein released from (marse zoned out during this part)--. Something about a layer coming detached which sounds awful but I guess is normal, and the fluid released-- parts harden that he described as honeycombed and the others collect those parts and that's what I guess it looks like. It's supposed to settle down. It's not nearly as bad as it was Friday and thankfully I'm not alarmed but it's still very distracting as of now. I said if it was that normal why don't they teach us that after a certain age you're eyes will temporarily explode but don't worry about it...

Oct 14, 2015 7:30 AM

Wow, well thanks for the description. At least I'll know what to be wary of. I hope your eyes continue to improve and it doesn't happen again. πŸ™πŸŒΌ

Oct 19, 2015 4:46 PM

Back to the eye doctor this morning. He saw the one that's driving me crazy this time, couldn't last week for some reason. And the plug fell out of that eye. I guess this is the settled down version. My only option is a controversial laser surgery that attempts to blast through these bigger floaters but may create more problemsπŸ˜•. He gave me a new drop for the burning dryness called Retaine and forgot I'd already tried restasis. Now I'm home with one huge pupil, a giant headache, a biopsy tomorrow, one neighbor hammering a wall and the other some poor doggie has been weakly but consistently barking for the better part of three days. I know how he feelsπŸ’.

Oct 19, 2015 11:05 PM

@marsemouse
Sending gentle hugs and prayers your way. Any word on having a sleep study?

Oct 20, 2015 1:59 AM

thank you shiovanπŸ’–. I don't know when I'll get a chance. I just woke from another agitating dream so I think it's time to do the research. I'm glad to find your post, maybe I can get back to sleep now⭐️.

Oct 21, 2015 9:16 AM

Marsemouse, I'm glad the doc was able to see that floater this time. I hope your headache is gone by now. Did you ask what the success rate was, and level of complications for the laser surgery is? Will your insurance cover it? Take your time deciding. Hugs & a prayer for you! πŸ™πŸŒΌ

Oct 21, 2015 12:22 PM

Thanks Flappys. No he didn't say much, just that it's controversial and the dr is an hour away. I'm just hating this, I don't think I can wait the 6 weeks to see how well I adjust to being chased by spots all day long. There are two large ones causing most of the problem. I lived through the thyroid biopsy. There was a surgeon guiding the doctor by the ultrasound screen while she went in, so I heard a lot of 'more medial, no no 2cm lateral, no you're right on the trachea, there right there go for it' etc etc. Nervewracking but they were extremely competent which mattered more. They had to go in five times for various samples and there was a lot of deep needling in many directions. I can see where it could get very uncomfortable in less optimal circumstances. The surgeon was very kind and the Xanax didn't hurt either. (I would say that was mandatory for me.) Definitely sore today but nothing I can't eat over (!) I'm a little crestfallen because the surgeon was already talking worst case scenario, my thyroid being removed--but that she would be the surgeon doing it (a good thing). I was not prepared for that eventuality I don't know why. I asked if it was related to breast cancer and she said they're just doing studies about it and asked what side I had radiation on. Same side as the suspect noduleπŸ˜•. So I guess not directly related but radiation related. Makes me so mad that we don't have better treatment options yet. That radiation did a number on my auto immune system that seems to keep on giving. I recall (was it you Flappys?) someone saying getting the thyroid removed was the beginning of endless problems for her friend. I don't want to think about it. The other time I found out 15 minutes later, this takes a week. I feel weepy and creepy today in a kind of hungover way and still feel the lidocaine wearing off. The biopsy itself wasn't unendurable and I didn't feel like I couldn't breathe or that I was going to gag or anything. Thanks hope everyone is okay.

Oct 21, 2015 12:33 PM

I didn't even know about the thyroid nodule until I got a cervical spine mri for DDD. It was an incidental finding and I took months getting to a doctor. If it does turn out to be something I wonder when or if I'd have ever even known.

Oct 21, 2015 4:32 PM

Marsemouse iI know how u feel regarding eye floaters, I have several and one especially that when catching me off guard I think is a blasted large spider crawling across floor if ceiling. My floaters Def get worse when I'm tired or headache. I've had 28 eye operations for the same thing and the ops created the floaters themselves. They even gave me false iris and cornea but it's scar tissue causing my probs on top of original prob. U can train your brain to ignore the floaters most of he time. Good luk

Oct 21, 2015 7:48 PM

Really Dolph, you had this surgery? Thank you so much for saying. I work myself into such anxiety, I really started thinking I might lose my mind if I have to see this for the rest of my life every second for everything. I even see these in the dark sometimes. It's a panicky kind of thing almost like claustrophobia but mostly it's just another bummer adjustment. Maybe that's what tinnitus is like. Plus my eyes are so fricking burning dry. 28 operations on your eyes for this and it made everything worse?! Geez that seems like cruel and unusual punishment. It's definitely worse when I'm tired and stressed like everything else. Thanks for posting dolph-I just watched a movie about a dolphin and really really really wished I was in that aquarium petting him and swimming.

Oct 21, 2015 9:16 PM

No it wasn't me. My sister has nodules but no biopsy planned. πŸ™πŸŒΌ

Ready to start relieving your pain?

Join Community