I'd love to know how people are able to cope with the relentless appointments when you know you will receive an eye injection.
I started out feeling, and telling people, that it's not as bad as it sounds. I've just had my 8th injection and I'm feeling like I just can't take it any more.
I know there are people who've had way more injections than this and I just wonder how, on earth, do you cope?
I'm feeling really assaulted tonight. My eye is sore, it's watering and I absolutely dread the thought of another eye injection in 4 weeks.
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folkmusicilike
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If they would flush the eye effectively .... I bet it would make a difference. I have dealt with this for over six years and until I told my rs about it and he did the after care I had no idea the extra flushing would make such a difference. I know they have to use the iodine - or betatyne (that they use in the u.s. - to guard against infection.
I so sympathise! I have had about 20 injections, to no avail, it seems in my left eye...which is not now considered worth doing...only for it to kick off in my right eye! I hate the iodine, my eyes sting and ache for days afterwards. I saw my optician this week who wanted to dilate my pupils. I told him how I hated those drops and he told me he used something so that my eyes won't sting...and they didn't. Why, I asked, don't the NHS use this for us AMD sufferers? Money, it would cost 20p per eye. I would so gladly pay that for me and another twenty people besides but they won't do it! This could put me off having any more jabs and then I would be a burden on the state when I needed help.It's effing mad! Rant over
Since my second injection they've used chlorhexidine. As I've said below I think my request not to have iodine was ignored this time and I had another extremely painful reaction.
I have had the same experiences. My last injection and the resulting watering, pain, scratchiness seemed too much to bear. The last time my eye watered continuously and was so painful. I finally just had to go to bed so my eye would stop blinking. I told my retina specialist about it when he told me there was some fluid and it needed to be treated. I said, it doesn't seem to be doing much for my vision, is the injection worth the pain. He was wonderful and said he would do the follow up care after the injection. He flushed the eye more than I have ever had done. It was like a miracle .... No after injection pain, or scratchiness. I didn't need an injection at my last appointment last week. But in the future, I will be sure to let the technician know my eyes need to be flushed extremely well. I asked the scribe to put it in my chart that I need more flushing but she said there is no place to put it. Just tell the tech what I need. My retina specialist had me look up, look down, look up, look down many times as he was flushing out the eye. I have never had a technician have me do that. Believe me, I will speak up when I have my next injection. He also phoned in a prescription for ketorolac, but I didn't need to use it. The only side effect was blurry vision, which resolved by the next day. Don't hesitate to speak up and have them flush your eye effectively. I will not dread the next injection. My vision is staying at 20/30 in both eyes so it is definitely worth it.
Hi folkmusiclike,
You are definitely not alone. I think we all question it at some point.
For me I decided one week of crap was worth three weeks being able to read.
As has been said, good flushing definitely makes a huge difference. It's a pity we have to beg for it.
There is an alternative to iodine if you have a real sensitivity. I think it's chlorhexidine.
One thing that helped me after 20 inj was being told I could use soothing drops after inj (prev told not for 5 days).
I use Hylotear every 2 hours. It's preservative free and the bottle has a special dosing system so can be used up to 6 months after opening although I always open a fresh bottle after inj.
There are other sterile drops for dry eye too. speak to your Dr.
Unless your eye has been scratched by the clamp, or you have bad iodine sensitivity, then the problem is dry eye (a result of the preop drops and not being able to blink during). Regardless, soothing drops will help.
My consultant told me when eye waters up it's telling you it's dry and needs the drops. I use them every day now and especially in winter. Also wear wraparound sunglasses to keep draught out of eye.
I'm due injection no 9 next week and not looking forward to it.
I've been attending the hospital for two and a half years now and am totally fed up,with it all. Seems never ending. My consultant always insists of lots of check ups before injections which draws the process out even more.
They have to check all sorts of things to make sure it's safe to inject ( pressure/ signs of existing infection/ whether there has been improvement etc so they can decide if another injection- with its attendant risks and cost, is justifiable.
I think each injection costs several hundreds of pounds- we are lucky they exist now and that they are funded on the NHS.
The reason I do it...one due on Wednesday ,is the alternative is far worse than the injections.
Plus at this moment in time my lovely husband is in intensive care having had a dreadful fall and fractured his spine. . He has been on a life support machine for the last four weeks and I need my sight I have to be there for him.
Looking at all the stuff he is enduring right now , a poxy little injection is nothing.
So sometimes , perspective and blessing counting is needed.
I'm so sorry to hear about your husband. I do hope he is recovering.
I do agree that perspective is important, and I have generally had good experiences with the injections. The last 2 times have been difficult and this time, in particular, it has been dreadful - I think because of scepticism about iodine reaction. I do accept that there are worse things, but I also think we all have a right to the best possible treatment and to be listened to, no matter what the problem is.
Some discomfort after the injection is to be expected, but if you are experiencing pain, it is important that you feed this back to the eye clinic as soon as possible, in case there is anything that can be addressed In order to prevent it happening again. Sometimes they may wish to call you back in to check your eye.
I am copying a link to our leaflet on pain after injections:
This may be useful as a discussion point with your ophthalmologist.
Please do not hesitate to contact us if we can be of any further help. The Macular Society helpline is open 9am – 5pm Monday to Friday on 0300 3030 111.
I don't know if I am typical, but my default position is not to go to the hospital if I can manage without. My injections are always on a Friday so as I am usually over the pain by Saturday night. I prefer to forget it, although it is truly agonising and frightening at the time.
I also wonder if healthcare professionals really understand how difficult it is to raise the same thing over and over again. At my appointment I speak to a registrar and then, after some time - usually another hour at least - I get to the person administering the injection and am expected to repeat what I've already said when, by this point, I'm in a state of high anxiety and the person administering the injection is on the 20th person of the morning. Maybe, I shouldn't feel it, but I'm of a generation that doesn't want to 'make a fuss'.
I feel the injection. It's usually been quick and that makes it bearable. However, I've had injections that I've had no subsequent reaction from, and injections which have caused such problems that I can do nothing at all for 48 hours. Obviously, I prefer the first outcome.
The iodine issue is the most consistent problem leading to after-effects, yet I feel my experience is not heard or is questioned every time.
You should not be in a position where you can describe experiencing pain post injection which is truly agonising.
It may be worth ringing or emailing your ophthalmologist's secretary. If you contact us on the helpline we may be able to supply you with this information.
It is not a case of making a fuss. You really should not be experiencing pain. If you contact the ophthalmologist from a perspective of concern, then this gives them the opportunity to identify and rectify the problem. As stated, you could use the information in the pain in the eye following injections factsheet as a discussion point.
if iodine seems to be the cause, then ask if they will consider using chlorhexidine as an alternative.
Just think that having the injection even if a bit painful and sore is better than loosing your eyesight and not being able to do the things you enjoy.
I do feel a tad sorry for myself, but fine by the morning. You get used to it I've been having them on and off for past five yrs. I did have a year without. I generally get all my jobs done the night before and also have some treats in evening of injection,glass of wine, chocolate, put my feet up. I remember after the first one I went to bed and felt like I'd been assaulted. You get used to them. However I was nervous having them again, after having a year off. My mum and dad went virtually blind, so I think I am really lucky to have them.
I know exactly how you feel. I had injection number 9'on Tuesday . There was a big delay between anesthetic drops being administered and jab so felt it go in and out and got told off for jumping !! It seems a never ending process. Have been attending hospital for two and a half years now.
At the beginning I thought it would be a case of 3 jabs in a row and that would be it? Little did I know!!
Try meditation to help you relax & take the fear down a bit. Have had many injections, i have lost count & always am fearful of what will happen so try to calm myself before i leave & in the waiting room. Not always easy with many other people feeling the same way at our clinic.
I always tell my self that the injection only lasts seconds & that it beats the hell out of the alternative.
Wish you well, less fear & pain for your future injections, you are not alone!
Chlorhexidine although an effective antisepsis, iodine is more effective, hence why it preferred. Because of this most clinicians prefer to try and use it as the risk of irritation/pain versus the risk of a very serious infection called endopthalmitis is minimised.
Maryparry -i know of no dilating drops that do not sting. Some more than others but they all sting. I suspect you had pressures done first so the drops used for that topped the dilating drops stinging.
Any patient withva condition requiring eye injections needs tests at each attendance - vision and Oct, this gauges how your condition is going but is also a legal record. These conditions are generally lifelong, or until treatment fails to maintain vision.
The good news is, that scientists are working on replacing the injections with drops, which is so much less invasive! I can't wait.
I'm now getting injections every two months which is much better, and I have them when I don't have PMS. I've noticed the injections were much worse (feeling very sorry for myself) during PMS! Something for you to consider folkmusicilike, if you still have a menstrual cycle...
I guess we'll have to accept that they'll never be fun, but as said before, at least we get to keep some eyesight. After 11 injections I still can't read with that eye. I tell myself that life is short so lets make the best of it with what we have.
Of course, I do carry on because I want my eyesight back and, can honestly say, I've seen an improvement, which seems to be more than some can say so in that sense I'm lucky. I think it's reasonable to come on a forum about macular degeneration to have a moan though!
No matter what the improvement, I still dread the injections. I was OK until about the 5th one. There's been a change in personnel every time since then and it has unsettled me and I've lost a bit of confidence.
A change in personnel every time sounds awful indeed. I'm lucky to have the same short funny Chinese guy every time and the receptionists are extremely caring It helps to feel you're in good hands.
Sorry if I sounded as if you shouldn't moan, didn't mean that at all!
Moorfields give me so caramelise drops to use after injections and they stop the soreness straight away. I've only had 6 injections but am much less troubled by them now- if it wasn't for the infection risk, I would be quite relaxed about them- but am always pleased when the first few days have passed after injections.
I read your comments four years on and felt every word. I am becoming so depressed by these injections that it is having a fundamental effect on my mental and physical well-being.
I would be most interested to hear how things are for you now.
Hi Babyeyes Unfortunately, I’m still having the injections and have realised this is likely to be lifelong now. I have drusen in my left eye & have lost the central vision in my left eye altogether.
The clinic did eventually accept that they can’t use iodine on my eyes.I have now also been diagnosed with corneal dystrophy and in January 2020 had a full corneal debridement (removal) in my right eye which caused immense pain for 2 days, but I saw an improvement in my pain levels following the injection after that, for a while.
Since then, during lockdown, when I haven’t been allowed any support with me in the clinic, I have developed wet amd in the left eye, so now have injections in both eyes at each clinic (every 4 weeks).
I still get pain due to the cornea problem, particularly on waking in the morning and have periods of blurred vision. I’ve had to go to A&E twice for removal of loose epithelium. I now have a regime of hourly lubrication and gel at night which is helping for now.
It’s all awful and I find talking about how I feel about it at the clinic is met, often, with dismissiveness but, occasionally, I am listened to.
I see someone different virtually every time I am at the clinic - both the post-scan practitioner and the person giving the injection. It all feels like I am on a journey through each clinic where I am of little importance - only the successful throughput of patients counts.
Of course, I am pleased that my eyesight in my right eye is not deteriorating to the extent it would have without the injections but I do feel that the psychological impacts of the treatment and the problems covid have caused are swept aside.
I have no-one who can give me a lift so I am reliant on public transport and the journey home after injections to both eyes feels like too much to bear. I can’t see well enough to order a cab after treatment.
Until writing this, I didn’t realise how much I need to be able to share how tough this all is.
I have, twice, been told that there is no fluid but I still have the injections and the fluid has returned both times.
The good news is that I still have eyesight which allows me to continue to work and carry out my daily tasks. I try to be stoical about treatment, but I have lost confidence and dread every appointment.
I think we each have to find a way to cope with it all. What keeps me going is retaining my sight.
It is so ,so awful I am sorry. I do understand and its the thought of enduring this forever which is depressing.
It is hard to be brave and resilient and I congratulate you for your fortitude.
Thank you for telling me and I send you my very best wishes.
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