Pain during eye injections for wet Macular... - Macular Society

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Pain during eye injections for wet Macular Degeneration

Painting567 profile image

I've previously expressed my concerns regarding extremely painful eye injections in both eyes, I've also stated how my Consultant was trying different Anaesthetic etc in an attempt to alleviate the unbearable pain !! I have been having during eye injections for 4 & a half years & despite my Consultants efforts to alleviate the pain, he has not been successful, however the WAMD in my right eye is being maintained successfully with 8 weekly injections & my left eye which is unpredictable ( with small bleeds behind the retina) if not injected every 4 weeks..... 3 days ago I had both eyes injected, scans were good no further deterioration etc , & my left eye was given another week making the next injection 5 weeks instead of 4 .... so all good news, however, despite all & everything possible to make my injections less painful, nothing works it was horrendous!!! Unbearable,.... I do everything I'm asked to do & stay completely still, even though I'm shaking in anticipation of the insertion of the needle, then I inadvertently jump with the pain.... also the aftermath this time is just awful both eyes are bloodshot , & stuck together with grunge which I bath with boiled water & then administer the lubricant drops prescribed, slowly both eyes are improving..... my very considerate Consultant suggested I go to my GP & ask for a prescription for pre med tranquilliser tabs .... does anyone else take tranquilliser tablets before injections & if so what tablets do you take. Thank you This is a photograph of my eyes three days after injections

48 Replies

Personally I have put it down to technique, but of course, for whatever reason, you problem might be different. As you talk about your consultant doing the injection, my first thought was that you are in the USA but I see you are in UK. Are you having injections privately? If you are, have you thought of trying someone else? Having a high position, doesn't necessarily mean that person is good at everything. A few days ago, my husband and I were talking about having blood tests. He had been at the hospital and the doctor left him with some very nasty bruises. My experience has been the same but, at our local GP surgery where either nurses or health carers take blood, everyone of them are superb and never leave a bruise.

It must be awful for you to go through that so often. I wish I could be of some help. When I first started having injections, they varied considerably depending who was doing it. Now, at my clinic, they are all trained the same way and it's a long time since Iv'e had any problems. Best wishes for getting it sorted.

Thank you for your reply, no I'm not having my injections privately, although the eye hospital I attend is a private hospital, however my treatment is paid for by the NHS we are so lucky in the uk , the cost elsewhere in the world is extremely expensive !!! However the procedure is the same for all patients at the private Hospital, regardless off private or NHS patients .... eyetests first, scans next , consultation with Consultant to discuss scans sight injections, other methods in research etc etc , nurse to prepare for procedure etc , then operating room with nurses to prep , than Consultant enters to carry out procedure..... in the past 4 years I have been injected by three different Consultants..... for one of those years I've had the same Consultant for over a year. He is very experienced, kind, & has tried various anaesthetics etc in an endeavour to alleviate the painful injections including holding an instrument with more anaesthetic on the end holding it where he intends to inject all to no avail , however usually after the injections I recover quickly within a couple of days with little discomfort.... this last time injections were painful as per usual, but the aftermath has been terrible both eyes closed with gunge , blood shot & sore, they are however improving slowly.... the Consultant tried a stronger anesthetic , made no difference with the pain of injections, but now I'm wondering if I've had a reaction to the different anaesthetic.... I will discuss this with him next appointment.

in reply to Painting567

I quickly discovered that the best for me is to have a the injection as late in the day as possible, go home and call it night, even if it's 5pm. Good result. Best wishes.

The only severe pain I have had has been because the clamp has been not quite right. Very painful indeed - almost enough to make you walk with a limp!

Best wishes and hope something works for you, John

Yes the clamp can be very uncomfortable as well, but nothing compared to very painful injections

Regarding tranquillizers, for me, the worst problem is getting through the night before. GPs are very reluctant to prescribe benzodiazepines, but I do get a prescription for four diazepams (for four eye hospital or dental appointments), last time cut from 5mg to 2mg. The hospital told me they could let me have up to 10mg if necessary once at the hospital (or told I need an injection, I guess).

Obvious questions perhaps: Do you know which anaesthetic they are using? Have you checked how long it should be left and noted how long it is being left? Are you making sure they get as much of it as they can into your eye without it running back out or mostly ending up on your eyelid or eyelashes? Does it always hurt immediately the needle touches the cornea or does it sometimes only hurt as the needle goes deeper? Do anaesthetics work for you at the dentist? Have you found any other cases where topical anaesthesia hasn't worked for patients?

I sympathize x only a couple of my inj were totally pain free. I found the lower part of the eye best, the upper always that sharp jab ( I think its because the anaesthetic runs down and pools at the bottom). My doc said some eyes are just more sensitive.

Interestingly, since having steroid implants where you get drops plus an anaesthetic inj before the actual procedure inj, they aren't as painful. Even the anaesthetic inj seems to numb itself going in lol.

I'm sure I've read here someone had the anaesthetic inj before their wetmd inj. Maybe ask your doc for it?

As others have said, technique does help. Ive had consultants and nurses give mine, good and bad in both groups ( and by same individuals on different days!).

My tip is to take two paracetamol about an hour before the inj so its in your system ready. Might be a kind of placebo effect but can't hurt! Good luck going forwards.

Thank you eyesright I've tried paracetamol & co-codamol didn't make any difference to the pain, going to try Valium it might calm my nerves at least.

Sorry to hear your painful problem, do you think it could even be the actual drug injected into your eye is the problem? Every drug has side effects, could you try and change that for a different one. If it’s the same reaction, then go back to your original one. I had that awful pain after injections, but it was the antiseptic drops that caused it. Changed drops and bliss.

Take care.

Thank you Whitegoose it could be anything I'll talk again to my Consultant

Have you looked at the fact sheet from the Macular Society? macularsociety.org/sites/de...

You should not be undergoing this amount of reaction.

Four different types of anaesthetic are available I believe. Low iodine protocol helped me and a light handed, deft technique. Had terible pain after the aneasthetic wore off at first. But never had pain during injections worse than that experienced during a blood test for example. Relaxing helps.

Different size needles?

One medic who injected me at first had a techniquevwhich always caused pain afterwards. When I had other injectors I realised it didn't have to be painful! Refused treatment from the offender on occasions and other staff were found.

Best wishes!

Yes I have thank you it only refers to pain or discomfort after injections

Are you sensitive to other medical procedures that others find no problem or is this a completed isolated experience? Do you know if you are sensitive to iodine?

I do not suffer from any allergies, as far as I know, even if I did ,I doubt it would cause such horrific pain on point of injection , usually following the injections I don't suffer with excessive after affects ,

just a little soreness for a few days

Unless the iodine is causing a reaction that is not suffuciently deadened by the aneasthetic I can only think of too large a needle, not enough aneasthetic, excessive sensitivity to pain, heavy handed injection technique or any combinationof these. It is not a pleasant sensation for me. Feels like quite intense pressure but momentary and blunt not sharp. Soon over and few side effects these days with the low iodine protocol which means your eye is well washed out after the injection and they don't flood the eye with it in the first place.

Don't give up on finding a solution. Few people complained in the early stages of this treatment and it took a long while for the profession to recognise and suggest answers to these problems which should not take days out if your schedule while you recover.

Good luck.

I was thinking it was technique until I wondered if it was because my eyes were a bit dry. So now I put a couple of eye drops into the eye being injected before I go in and hey presto no more pain I was given the drops by the eye team and have a box of them so I grab a couple of vials to take with me at each appointment you can get different strengths. They are called celluvisc I have had injections monthly for 8 years.

Bcreek profile image
Bcreek in reply to tallyho

Well those injections dry out the eye so that would make sense are they available in Canada

Painting567 profile image
Painting567 in reply to tallyho

I always use a lot of lubricants Thank you tallyho

I take a valium before each inj - an hour before usually. It just helps to stay calm. I am sorry you have the severe pain problem. I do not. I have a friend in another part of the country (USA) who does however. His doctor told him that people with blue eyes are more likely to experience worse pain with injections. I don't have any idea if this is true. Anyway, this blue-eyed friend says he is going to give up the injections altogether. I hope he changed his mind.

Bobbie915 profile image
Bobbie915 in reply to Jihm

I also have blue eyes. I would be very doubtful if this is the reason for pain. I hope your friend doesn't give up the injections. Has he tried anyone else to see if they can do any better? I don't particularly like having needles stuck in my eye, but it is better than the alternative. I think it really helps if you can build up a rapport with someone you trust, so you don't get too uptight before the injection. Not long ago, I had someone different from the nurse I usually have. I asked if she would let me know when she was going to inject and I would try to keep as still as possible. She didn't tell me and when I asked why, she said I seemed relaxed so just went for it. She said she found that if people were told, they usually automatically tensed up!!

Jihm profile image
Jihm in reply to Bobbie915

Yes, I am very skeptical about eye color being a real factor. I plan on calling my friend today anyway. I'll see if he was serious about stopping.

Painting567 profile image
Painting567 in reply to Jihm

Thank you jihm , over the 4& half years I've suffered these barbaric injections, I've seriously felt like your friend whether to stop having them ,however the thought of loosing my Central vision is even worse!! I'm therefore continuing in my quest to find the answer to pain free injections!!! It's not an easy quest as not many people undergo the severity of pain that the minority do,& some even scoff & make comments like can't feel a thing or it's only pressure, well I can assure those who have not experienced such pain would change their minds if they did .... I'm no stranger to pain having had many operations, broken bones, arthritis,many back problems, childbirth, in the days of little pain relief...none of these compare to the severity of pain,I experience with these eye injections...... fortunately in my case the pain usually only lasts for the period of time the eyes are being injected, however my last injections were horrendous not only the injections, but the aftermath of pain ,soreness, blood & grunge.... it is now 4 days after my injections & I continue to suffer with blood shot eyes, grunge & soreness, although all is improving daily..... I do have light coloured eyes though, I always thought they were a greenish blue ,but on a photograph of my eyes they do indeed look blue..... Thank you again I will now attempt to ask my GP for a prescription for Valium , at least they might help to keep me calm.

Jihm profile image
Jihm in reply to Painting567

I truly sympathize, Painting. We are all different. No 2 of us have the exact same reaction to any medication or medical procedure. It is good to keep that in mind when tempted to judge others. I hope the Valium will help.

tallyho profile image
tallyho in reply to Jihm

So blue eyes have less muscle depth than brown eyes ( I know this because I have had an iridotomy) this would not affect the injection because the injection is done in the white of the eye.

So sorry your having problems

For me it was the iodine,as soon as they stopped using it I was fine,so far anyway

Good luck to,you

Painting567 profile image
Painting567 in reply to Bcreek

Thank you Bcreek I've explored the Iodine thing it's not that

My first 3 injections of avastin, monthly, were at a private hospital & administered by the consultant ophthalmologist & although the first one was traumatic i.e. fear of the unknown, it was completely painless. So were the other 2 injections. I was then transferred to an NHS eye clinic. That was 2 years ago & I have continued to receive Lucentis injections over that time, with varying experiences. I put this down to the technique of the person giving the injection - I've come to know the nurses involved & that some have a better technique than others - when I see whose on duty I almost know whether or not it's going to be pain free. After my first year of injections I had one that was excruciating so I mentioned this to the ophthalmologist & he said I needed stronger anaesthetic & wrote this down in my medical notes for future reference. My next injection, with the stronger anaesthetic was almost painless so I was happy about that. However, although this is recorded in my notes it is not always picked up on by staff at my injections, so I have to remind them - then they look back in the notes & find the doctor's instructions. I remind them at every injection now, just in case they overlook it. Another aspect of this - I wonder if the eye, after so many injections, becomes more sensitive & so more painful over time? I too am on an 8 week cycle of injections & it has resulted in keeping the sight on my left eye. Looking at the treatment overall for AMD there is a lot of research going on so all treatment is still exploratory & varies greatly between patients. Let's hope some better way of dealing with it is found soon. My Mother had AMD but unfortunately at the time there was no treatment at all, so things have improved somewhat over the years. Sorry about the long message - know it could have been shorter - but it's just as it came out. Hope it helps in some way.

Painting567 profile image
Painting567 in reply to Hrosie

Thank you Hrosie I have my injections in a private hospital ( paid for by the NHS ) I always have the same Consultant who as tried everything he can to alleviate the pain in injection all to no avail he has tried different Anaesthetic etc nothing helps , he is also kind & gentle, but still the injections are painful, over the 4 years I have become very anxious even though I trust the Consultant, he has now suggested I ask my GP for tranquiliters !............ my late Mother lost her sight in one eye with a cataract operation, I have been in formed it was possible that she had wet MD , but a few years ago it wasn't diagnosed, however this makes me nervous because I also have cataracts in both eyes! However, she was in her nineties when she had her cataract removed , after the eye seemed to explode & she should have had her eye removed but due to her age they used to inject her eye with Botox to keep it closed ..... she passed away at 104 years old, cause of death old age

Do you get a Lidocaine shot before the Anti-VEGF shot? My clinic in the US uses numbing drops, then the Lidocaine shot, then they wait 10 minutes and inject the Avastin. I don't feel pain during the injection(just pressure) but an hour later the aching and tears begins. Sometimes I have a bloodshot eye for up to 3 weeks, usually only a few days. They usually inject in the same spot- lower outside corner of my eye- which makes me think Hrosie might have a good point. Four years of shots in the same area could be stressing out that area. But it seems like you've had pain since the beginning. So sorry, let's hope new treatments are available soon.

Thank you bloodshoteye ,yes I live in hope of any other procedure than injections .... Thankfully there are many different methods/research going on , some close to being available to the general public within a few years!

I stopped feeling pain once I realized I had to keep BOTH eyes open during the injection on just one of them. But I guess this is not the case with you. Hope you find the reason soon.

I took 3 mg generic Xanax before my first two shots. Helped anticipatory anxiety quite a bit. Then I was able to stay calmer after knowing the procedure for each shot.

I am so sorry for the pain you are experiencing. My ophthalmologist once mentioned that there are people for whom the numbing techniques just don't work. I asked him what could be done for them and he said that there was nothing that would help. I am really sorry to tell you this but maybe it is helpful to know.

Painting567 profile image
Painting567 in reply to LB1st

Yes I'm definitely one of those people! Nobody could have tried more than the Consultant I have ! He's tried everything possible, plus others before him all to no avail.

Sounds like you are one of the unlucky ones. I don't think you should be experiencing this sort of pain however. I have had about 20 injections and normally only feel a bit of pressure as the needle goes in. I think my clinic is quite good at giving numbing drops as the nurse gives some then the person doing the injection gives some more. Good news that you are responding to the drugs as I do not seem to be, seeing consultant next week hopefully to see where we go from here. Feeling rather nervous about it. Hope things improve for you. Good luck.

Thank you pink perfection, Tha Consultant always administers my eye injections he's very carful & has definitely tried everything including stronger Anaesthetic, extra Anaesthetic everything he can possibly do ,but all to no avail nothing stops the agonising pain when the needle is inserted ! I've also had two previous Consultants over 4 & half years none of them have been able to give me painless injections! Last week a new young man ( gave me the injections) my Consultant was with him , he tried his best, but still the excruciating pain , & this time the recovery has been terrible, it's now 5 days since both eyes were injected & my left eye remains red & sore my right eye is slightly better ..... the good news is the injections appear to be working my sight is no worse,seems pretty stable especially in my right eye , my left eye is off & on at the moment my four weekly injections have been extended to five weeks! ...... however I also have cataracts in both eyes! ....... I sincerely hope you are given good news when you see your Consultant. Good luck.

Thanks for your good wishes, I feel so sorry for the pain you seem to keep experiencing it must be a nightmare every time you go. It is bad enough having to go through this treatment without other issues.

All the best.

Hello,

So sorry to hear of your difficulties. Although I think my eye injections are the most uncomfortable thing I've ever experienced - I don't find them debilitating. I do have a high pain tolerance and can mentally control my pain response. I gave birth to 2 kids with no pain control, and I have dental work done without novacaine - [because I hate the Novacaine injections more than the drilling pain!] I do a meditation sort of thing, deep breathing, staring at a focus point, "go to a happy place" in my mind. I learned biofeedback in the mid 70s as a migraine headache pain control and often revert to that training when faced with a painful procedure.

Studies reveal: The perception of pain involves far more than mere physical sensation. The emotional affective and evaluative components of pain are often as important as the actual pain signal. Focusing one’s attention on pain often makes the pain worse . Anxiety, fear, and a sense of loss of control contribute to patients' pain perception. Pain can be a learned response, not just a purely physical problem. Just as cancer patients can develop nausea as a learned response to experience it even before chemotherapy is administered!

Pain is an individual experience - we are all different - but looking at the studies about pain - shows that it can be much more than just the physical. You do seem to have got into an ongoing cycle or roller-coaster of pain and it must be truly frightening and frustrating. I wonder if using some anti-anxiety meds may help break that cycle? And set you on a better path.

I have been a nurse for over 40 years and have seen many pain control problems in others. In caring for them, I have done guided imagery and deep breathing, etc. to help them manage their pain response. Maybe give the anxiety meds a try. Also check into other control techniques: meditation, biofeedback, etc. Your healthcare team should be able to locate some resources for you. No one can magically make pain go away, we should be able to have it be manageable.

I hope you can get some improvement,

Linda

Painting567 profile image
Painting567 in reply to Ayralin

Thank you Linda, I also am not a stranger to pain, having had many operations, broken bones childbirth in the days when little or no pain relief was given, I've always managed any pain I've had previously, but these eye injections are getting worse although I attempt to alleviate the pain with deep breathing etc.... my next attempt will be prescribed tabs from my GP hopefully Valium ,at least it may help to calm my nerves.

Ayralin profile image
Ayralin in reply to Painting567

I am glad you are trying the Valium. At least the anxiety might be eased. I just can't imagine how hard this is - we should not feel we have to make a choice between losing our sight and having excruciating pain! Please let us know if it helps at all.

Linda

Im given Ativan before the injection. The doctor flushes the anesthetic gel out after the injection. Then I sleep for about 4 hours.

If they don’t flush the gel it gets gummy/crusty to the point of cutting the edges of my eyelid. If it don’t sleep it feels like a bunch of sand is in my eye.

Hope you find a solution.

Are you sure its not the trapicomide used for the dilation.....changing that has changed m,y life...just a thought?

Your experiences are quite horrific. I have had 90 without discomfort other than slight pressure. I find it difficult to add to the suggestions already made other than to wonder if the doctors have tried injecting into different quadrants of the eye. I know of one patient in the USA who suffers extreme pain and benefitted greatly from her doctor mapping the quadrants and choosing the least painful one.

Painting567 profile image
Painting567 in reply to

Yes they have all three Consultants plus a new one have injected in different quadrants of the eyes.. made no difference still painful...... Thank you Rennatk

in reply to Painting567

We are told that an eye drop is being trialled, probably in the USA, which would obviate the need for an injection.

Here’s hoping it comes into use soon.

Painting567 profile image
Painting567 in reply to

Yes my Consultant informs me of all the preasent research taking place ,all giving hope in the future, but all still continue to be in research!!! Maybe AMD will be a thing of the past for future generations , I doubt in my lifetime, but we can live in hope ... Thank you Renntk

You poor thing, I'm so sorry for you.

Personally for me its technique , I suffered horrendous pain for couple yrs then got app with different day clinic, what a difference, I have found the best injector ever, I feel nothing , no pain, but guess what, everybody wants him !....all good suggestions here, I really hope you find the answer to your pain , good luck x

I'm so very sorry for you, it seems you have tried everything , the only other thing I can suggest is a different hospital, I know it sounds silly but a different environment and team might just might be able to help you .....my first year of injections were pain free, I thought great i dont mind having these inj....then the clinic moved from main hosp to an annexe, I never saw that doctor again, the next 2 yrs were horrendous every time, I refused to have one person, so put in another consultant's clinic (same hosp) for next 2 and half yrs I had the most gentle, quick, pleasant doctor of all, it quickly became clear everyone wanted him, he was on holiday one time and the consultant injected me which was not good, when nice doc came back I asked if he could do my inj instead of consultant, which he was happy to do but consultant wasnt happy ...following app was a different day with a different consultant, ....(previous con did 8 weekly even though nothing changed, macular Society suggested he did it 4 weekly but he didnt listen, then told me no more inj in that eye due to scarring )....back to story ...this new con immediately started me on 4 weekly for remaining eye, ....hmm....he must have read my notes ...I've been on 4 weekly since Jan, looking good as my next app is 5 weeks, .....what I'm saying is not all consultants read of same page.....only thing now is trained nurses doing inj and they dont read off same page either ....although taught by same consultant ....I wish you well and hope you find an answer xxx

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