Bad lifetime near-sightedness (os -13.5) has led to macular degeneration in my left eye.
Went through 18 injections of Avastin over 4 years, now on my 5th Eylea. Over all this time, warping distortions have improved greatly, dark grey spots obscuring central 25% of vision have not improved but have not gotten any worse.
On about half these shots, I have endured searing pain from 6 to 18 hours later. I mean terrible agonizing writhing pain. Can only imagine this is what a direct shot of ghost pepper spray would feel like.
Wear a pirate patch for extreme light sensitivity, ice only helps a tiny bit for a short time. I gobble whatever general pain meds I can find leftover in my medicine cabinet (hydrocone, vicodin, etc) but doesn’t help much for the amount of risk there.
Seems to me that the frequency of a painful injection is worsening.
My sympathetic ophthalmologist believes it is because of a sensitivity to the antiseptic iodine he insists is necessary. I make a point of talking about that at every session and he rinses and rinses three times his normal rinse. We cannot really find the secret to why sometimes it only an annoying ache for 4 hours and sometimes it’s an excruciating ordeal for 12 hours.
Looking for opinions from fellow sufferers. Has anyone else’s doctor figured this out? Is all this agony going to save the eye? Am I enduring this suffering just to postpone losing the eye by a year?
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lefteyegoing
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Hi lefteyegoing, sorry to hear your pain, had a few similar myself (Lucentis and recently eyelea).
They can use a different antiseptic (I think chlorhexidine). I haven't had to ask for it but others on here have. Luckily lots of rinsing seems to do the trick for me.
I take painkillers about an hour before inj. - 2 paracetamol.
I think the site on the eye also makes a difference as does the skill of the injector. Plus how quickly it all takes, too long and eye dries out.
My clinic now give soothing drops after inj which helps and I use lots of my own prescribed drops too (Hylotear). Dry eye is very painful and not to be underestimated (if the eye tears up it's dry and needs lubricating).
At the end of the day you have to weigh up if a week of pain is worth 3 weeks of sight - different for everyone depending what you can see I guess.
Wishing you well going forward, hope things get better for you x sending a hug x
Dryness? maybe? Eye doesn’t feel dry to me, but will think about that. An hour or two after the injection I take off the soft gauze pad and it’s wet. Then I put on my pirate patch because it allows for blinking.
I’m going to ask him to switch to chlorhexidine in case it’s better.
I know it seems counterintuitive wet eye being dry but my consultant told me and my drops do make a difference to me at least. If your pad is wet consider the eye has been tearing to moisten itself and if used tears up needs some help?
The girl who gave me my injection yesterday did mention how dry my eyes were and suggested I put drops in same day of injection right before I go for one I use systane so I will try on 1/26 when I get next injection I will let u know if it helped
I have had three eyelea injections at Moorfields hospital and am given Carmellose (Evolve) eye drops each time to use 4 times a day for 5 days. Every time the eye feels gritty or sore these drops stop it straight away so it may be worth trying??
Over the years have tried over-the-counter eyedrops, Visine stuff like that. Extremely painful going in, no relief after. Eye Doctor told me not to use them. Didn’t have to ask twice. Will look into the Carmellose.
Hello lefteyegoing, I am so sorry for you having to endure the pain. eyesright has said already all I would agree with. I had just one really bad episode when every bone in the left side of my face became excruciatingly painful for many hours. On the following visit to the clinic I had various replies to my questions from a nurse saying in an almost indifferent way: "Well it sometimes happens" to the consultant saying: "Well, there are so many chemicals put into your eye, it's hard to say whether or not it was the iodine." Now, the iodine has been replaced for chlorhexidine. It does not seem to make a great deal of difference. I still have the extreme soreness every time for about 12 hours, but I always go to bed as soon as I get home from the injections with painkillers, when it becomes bearable and I sort of sleep it off.
I quite understand why you are wondering if the pain is worth saving your eyesight. I had exactly the same thoughts after my very painful first injection rather than the aftermath. I thought I could not face it again. But the injections have done some good and seem to have had some success in your case too. While you still have one good eye you may well be tempted to abandon treatment. Your treatment will be stopped anyway when it is deemed to be of no benefit to you any longer, so while it goes on there is still hope. And consider this - what may happen if or when the other eye becomes affected too? I would like to suggest you hang in there. Every bit of central vision is better than no vision at all.
Trust you medical team. I wish you the very best. xx
I get that indifference sometimes from the staff sometimes, too. Maybe it’s because it’s not as painful to all their customers? I mean it’s tolerable sometime for me too, I go back in with a good attitude thinking we figured it out, and bam, bad night.
The shots do seem to do some good. And thanks, yes, that is a sobering thought, what about when the other eye starts falling apart? That’s why i looked up you good folks to maybe groupthink some relief.
I am trying to trust my medical team, I usually do. But this much pain strikes me as a warning of some sort. Those 12 hours of agony can’t be good for our eyes.
I am having the exact same experience. I thought I had the pain problem worked out and Bang today I have had 12 hours of pain again.!! Very depressing . Have not had a bad reaction for some time. Can’t work it out this time .
Had the same, then discovered it is the iodine drops and surface wash. Now the clinic wash out after the initial drops, then use a diluted iodine wash, followed post injection with a thorough wash out. Problem solved for me. Good Luck
When they rinse do they have you look left, right, up and down a number of times so that they remove all of the iodine. If not some may remain in your eye even though they appear to rinse thoroughly?
yep. Does the whole look right, rinse, look left, rinse, etc. One time I felt like I got some minor relief by folding my eyelid up and dragging a wet washcloth across it. I thought maybe the iodine was on the inside of the eyelid where it might get rinse water. So now I hold my eyelid up and he squirts saline on that too.
By the way, very sorry for everyone’s eye troubles and everyone’s pain. Thanks for your thoughts.
Here's something that’s kind of bugging me.
One injection, when it was truly all night agony, I had someone drive me to the Ophthalmologist’s office for the second it opened. He pried my swollen bloodshot eye open and put some drops in AND THE PAIN WENT AWAY INSTANTLY. Like my mouth was open in a silent scream and then, poof, no pain, I was like, oh, thank you, much better. Instantaneously stopping 12 hours of agony.
These are the drops they use in the office all the time before a pressure test. What are these drops? Tetracaine? Proparacaine? Alcaine? Anybody know? Of course, they are not allowed for “home use” so they cannot be prescribed to us.
I told him I’d give him $1000 for that little bottle of drops. He joked you need 8 years of med school to administer these eye drops.
I left empty handed but happy from the relief. Much later I started thinking they really should send us home with those drops. If getting over the pain of the injection is just a matter of time, why not make the eyeball comfortable so as to not risk further stress or scratch? Why don’t they give you a six or eight of those drops?
I think it's because when the eye is anaesthetised that much it's too easy for us to damage it later as you cannot tell if you have rubbed it too hard etc.
I agree though. As grownups they should trust us and give us the drops if we say it hurts too much - had a 3 day pain episode in the early days and nearly went out of my mind!
Tetracaine, Proparacaine and Alcaine local aenestetic drops and are mostly used before opthalmic procedures such as removal of cataracts or some other eye operation. It appears they can be prescribed and instilled by the patient, but you need to discuss it with your Consultant or GP.
Really? This the first I heard of it. You can get a prescription to self dose Tetracaine? Thank you, will bring that up to my Eye Doctor, see what he says. That’d be a big help to all of us.
yes, only if your doctors agree. I don't think it is in common usage possibly because of cost and side side effects. It can interfere with other medication.
you poor thing ((((")))) it is terrible to have this much pain every time, i used to get really bad pain ( have learnt to take painkillers and lie down), and i use viscotears non preservative , which can help, i had such a bad experience with injectors that i get consultant to do injections now, long story , ....good advice on here, but keep telling the clinic as i dont see how they can leave you in such awful pain, ask the name of anything they put in your eye and keep a record, hope you get to the bottom of it, good luck xxx
I wouldn’t hesitate to take pain killers, whatever I have around the house. But most times the result is, dang I’m high but my eye still hurts.
Definitely good advice here, very helpful to hear what everyone thinks. Good advice from you too thanks. Keep a record of all the stuff they are doing, you’d think after YEARS I would know. Like is Viscotears some of the stuff my doctor is putting in my eyes before the injection? It’s that clear syrupy goopy stuff? That's how much we are conditioned to trust doctors. I let someone pour something I don't even know the name of right into my eye.
I’m thinking maybe this is the time to switch doctors. Get a new guy who I tell going in that my condition and apparent sensitivity to eye antiseptics will require a prescription to home applied eye-numbing drops.
Giving you anaesthetic drops to take home would be wholly irresponsible of the clinician. Firstly they numb the eye so if you do any further damage you won't know, they delay healing and they are likely to cause toxicity to the cornea. All of these are potentially dangerous. I presume the syrupy stuff is iodine -its likely you have a sensitivity to it. Chlorhexadine can be used instead but is not so effective in its ability to 'clean' the eye, ultimately the goal is to reduce the likelihood of endopthalmitus.
Yes, the drops numb the eye, but I would be very very careful not to do any further damage to it, IT’S MY EYE. No one would be more careful. I think the numbing the eye would be the best way to prevent accidental damage. Two drops, cover with pirate patch, sleep till it’s better. That seems safer than jamming an ice pack against it for 8 hours.
Do you have a source I can read up on about anesthetic drops being “likely to cause toxicity to the cornea.” Likely? That’s somewhat alarming, I get those drops every time I go in for an exam.
13 hours of pain . Easing off now. Hope I can sleep
Now!!!
There are alternative iodine containing solutions. Worth asking to try a different formula. The same applies to anaesthetic drops. Most clinics have at least two alternatives.
Chlorhexidine is often considered as an alternative to iodine when a patient has a sensitivity to it.
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Morning there are many papers on the toxicity of anaesthetic drops - but I personally find proxymetacaine to be well tolerated.
The last one was a trial of the use of tetracaine for 24 hours post abrasion (albeit in the ER) but there are flaws which are included.
I don't think the answer in in the anaesthetic drops, really you need to get to the bottom of why you get this post injection pain. We use 3 x proxymetacaine, 1 x chloramphrenicol, 1 x phenylephrine, 1x tropicamide and finally 1 x iodine drop to prep patients for the procedure. A good clue to intolerance to the drops is the eye becomes very red where the drops have gone in.
I find if the eye is white prior to the injection the patients generally have little or no discomfort.
Will read those papers. Thank you for taking the time for the links!
I’m going to make him slow down enough to explain what goes into my eye (soap, antiseptic, moisturizer, anesthetic) exactly. Then I’ll come by and run it all by you guys. Doctors love that.
I think it’s multiple drops of iodine he’s putting in. And if I decide to risk one more shot with this doctor will ask him if there is any redness in the whites.
At my last appointment I made a real fuss about the pain after the eyelear injection, not the pain of the actual injection which I find no worse than one at the dentist's, but the following three days of agony that start from about an hour afterwards. Paracetamol is useless, co-codamol is only helpful in that it makes me drowsy and tramadol is only slightly better. What should I ask for - morphine?
The surgeon rolled her eyes and sighed, but she arranged for me to have three separate sets of drops (all this in front of a waiting room full of people who feel no pain, but it made no difference. No-one seems to believe me. My GP just says its worth it to save my sight, which I totally agree with of course, but I can't understand why no-one seems able to alleviate the pain! Is there really nothing to be done for us?
If there is indeed nothing - why don't they say so?
Love it when doctors look at you and say, “It can’t be hurting that bad. We were told by the pharmaceutical conglomerate, that it wouldn’t hurt that bad.”
Clueless doctors force patients to seek black market remedies.
I have macular edema in both eyes left is far worse than right and I have had avastin in the past with no big reactions and same with kenalog but this eyelea is kicking my butt I had the 1st one ever in my left eye 3 weeks ago I usually have a high tolerance for pain but this pain was almost immediately following injection I had no idea this was going to happen I can’t take anything stronger than Advil as it makes me sick my excruciating pain lasted a good 45 minutes then bad pain rest of day I had my right eye done yesterday and same thing this lasted longer about an hour and a half and today still hurts but not like yesterday according to the scan that was done fri it is working in my left eye so I will continue as kenalog which has worked great always has recently raised pressure in my eyes so I can’t receive anymore and hints would b greatly appreciated
It’s been 9 months since I started this thread about eye injection pain. I haven’t been here lately because, well, I lost that eye a few months ago.
The shotgun pattern of grey dots in my vision continued to grow until they joined together. 70% of my vision in that eye is now obscured. It’s the part where you need it, in the center. I have a small ring of vision outside still clear.
The retina is so shredded that my doctor decided more Eylea or Avastin or any other shots, would no longer be helpful.
I immediately sought a second opinion with an accredited eye institute and the diagnosis and prognosis were identical. My left eye was gone, no shots could regenerate the retina.
The macular society have info about using the outer vision to help see things ( I think it's called erratic viewing or some such). I know it's not going to make up for what you've lost but might help a little.
I had this too. I don't know where you are in the world but I guess it is not the U.K. I am now on chloryphenyl instead of iodine. It is not sucha great cleanser as iodine but it is no longer a hideous experience for me. I would have stopped if I had had to carry on with that and now my right eye is stable. In the U.K. iodine is routinely used as it is cheap and effective but there are alternatives.
This is 10 months old. I hope you're doing well. I experienced somewhat the same thing. My early injections, Avastin, were uncomfortable but not a big deal. My last 15 have been Eylea but they started becoming painful before that. My belief is it is the number of injections I've had. My last one was #50, my golden anniversary. They didn't provide cake. I'm only (only) 64 but was diagnosed with drusen at 27. A strong genetic element. At any rate, that's my experience. I dread them now. The injections can also cause cataracts and pressure issues. I'm having surgery for both soon in the ye that receives most of the injections. I'm rapidly losing the vision in that eye, which is the one I depend on. My doctor told me today that the injections worsen dry macular degeneration. I hadn't heard that before...
This is a really old post so I hope you've had a good outcome.
I finally went to my GP and asked if there was an alternative to iodine, and she immediately sent an email to the surgeon, and gave me a printout, asking for chlorohexidine-something to be used instead. I have to say that subsequent injections have been practically painless.
All the excruciating pain, dozens and dozens of injections, for nothing. I lost vision in that eye 6 or 7 months ago. So no longer taking any shots (see a few posts above). Never did have the opportunity to try chlorhexidine. I was given that ophthalmic ointment in the office but there was no trace of it 6 hours after the injection when the agony was the worst. Hope you (and everyone) have better luck.
I've received several tens of injections of Eylea in both eyes over the last 4 years. I also had a severe issue with pain after the procedure. My doctor decided to try the procedure without the use of a lid speculum. This made all the difference in the world to me. I do get some soreness afterwards however, it is mild in comparison to what I had experienced previously. He still uses the iodine and does a double or triple wash afterwards.
Been having Eyelea injections ( for a vein occlusion) .which were causing severe pain up to 3 days after.My eye was swollen and bloodshot.The consultant stopped using iodine and now uses chlorohexidine which is alot better.However it isn't as good at preventing infection so the consultant has given me 5 days of antibiotic drops to cover me.The injections are not pain free by any means but better afterwards .
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