Excruciating pain!

Excruciating pain!

Hello all, I had my 6th Eylea injection in BOTH eyes on Wednesday. Shortly after leaving the office the pain was bad but about 3 hours later the pain intensified with deep shooting pains every 5 seconds in my left eye! Nurse told me to take 2 alieve and 1 Tylenol and things would be better the next day. The pain got worse so I called back for pain medicine and they wouldn't. The Dr. said I had a scratched cornea and called me in a salve of steroid and antibiotic but NO pain medicine. I called the pharmacy and asked about pain meds. They told me to take 1 1/2 Tylenol with codeine and 2 ibuprofen. I had some Tylenol with codeine to use, thank god. I took them every 4 hours and the nightmare didn't end until 2am!

What the HELL! I'm going to have a talk with my dr. Why didn't he ever prepared me for something like this? I should have had this at the house just incase. I had to use an eye patch and keep eye closed for 2 days! I also had to keep my right eye closed because it caused the left eye to HURT! I'm pissed

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  • Hi Lynae, I know the feeling. So sorry for you. Thankfully I had only one horrific episode when every bone in the left side of my face was excrutiatingly painful and my face felt hot and burning. It happened as soon as I got home. It had not happened before and it has not happened since, but I am always wary of what to expect. What worried me most was that I did not know what to do about it or even if I needed to do something, nor was I any state even to make a phone call or get myself back to the clinic. I just took some painkillers and went to bed, fully dressed, I must say. I did not even feel capaple of taking my clothes off, apart from my shoes. I always hurt enough afterwards to spend the rest of the day in bed, but this was something quite different. 24 hours later I was fine.

    I noticed you have a soft eye patch on your eye. We don't get one in South Yorkshire. Do you think it might have put pressure on your eye? Just a thought. I do hope your next injection will be easier, but do make sure you remind the nurses and injecting team of your horrendous experience even if you have told them already. I gently remind the team every time, asking for lots of aenestetic drops and for a good rinse. And since it seems a different team each time they need reminding. All the best xx

  • You poor thing! You had to do it on your own. Did the Dr. explain why it happened? I hope I never experienceven that bone pain. We all NEED to be informed by these doctors! It sounds like you had to use your own pain killers as I had too. WHY aren't these Dr's prescribing meds to have at home just in case? Thank you for your response. Also, the eye pads were mine, they were not put on tightly, I needed to shut out any light and keep my eye from any movements that would cause shooting pains.

    How are the injections working for you?

  • As it happened, I was due for a review before the next injection was due. I first told the nurse about it and she just said "Well, it sometimes happens." Then I gave the consultant all the details and told him that my face had felt as if I had been battered with a sledge hammer and I asked him what may have caused it - the iodine or the eylea - he just said "Well, there are so many chemicals put into your eye, it's hard to say what caused it. We'll see how it goes." He did not offer any other explanation. He made a note in my files, but he did not seem too concerned.

    The next injection was reasonably ok, just the usual painful stab in the eye which I always feel to a greater or lesser degree and then the soreness afterwards for the rest of the day. I think it is a good idea to keep the eyes closed for that time instead of being brave and risk irritating the eyes even more just by blinking. I use my own painkillers - paracetamol, which I aways have in the house and they seem to work reasonably well.

    The injections seem to be working. According to the consultant the leakage has stopped for now and for that I am grateful, though I do not feel much of an improvement myself. That is probably due to the cataracts in both eyes and dry AMD in the R eye. So, both eyes are a bit suspect.

    I hope the injections are working for you too, having both eyes injected. It does not bear thinking about. I hope that all our SUFFERINGS are worth while. xx

  • My vision has improved from 20/80 to 20/60 in my left eye. The right has also improved 20/40 to 20/30. I can't tell the difference though.

    I'll keep in touch on what my Dr has to say about my horrible experience and if he can give any pain medicine BEFORE my next injections.

    Thanks for the conversation. It helped

    Lynae

  • I don't want to scare you but my doctor told me if that happened to call him right back because there is a very slim chance of infection, and if it happens you need to have the antibiotic injected asap.

  • My Dr did call in an antibiotic/steroidal sav for my eye which helped allot. Thanks

  • It didn't do anything for the pain for about 8 hours. I was told to put it in every hour for 4 doses

  • You poor thing, I always have stabbing pains in my eyes for about 12 hours afterwards but before I go to the hospital and get into the gown, slippers etc I must admit I take some paracetamol, the surgeon always puts a plastic protective eye mask on after the injection with perforations so I can see! I'm allowed to take it off in bed but I take a sleeping pill as soon as I'm in bed ( about 4 hrs after the procedure ) and the following day I put the eye mask back on and stay in all day as he doesn't want me to drive for 48 hours or risk any infectiion - I did ask him to put a few more anaesthetic drops in after the injection, which gives me enough time for a cuppa & biscuit before it gets too bad. Thank goodness it's only once a month - I dread it as I'm sure you all do , my next one is on Monday!!!!!!!!! 👀

  • My Dr has never used an eye mask for prevention of infection. In fact he never mentioned that it could get infected. I'm told to go home and rest. Ugh

  • Ok I've just had mine done today and my eye mask is in place as always with drops to use 5 times a day for 5 days and I'm feeling the stabbing pain every time I blink!!!! I think you should ask about the mask. I would put a picture of it on for you but I don't know how to do it !!!! I'm not very tech savvy!!!!! Hope you're feeling better now . Xxxxxx

  • Oh noooo, I'm so sorry!

  • Hi - do try downloading the Macular Society's factsheet on pain after injections. Go to Quick Links on the website. Click on resources and scroll down.

    The helpline will be on touch Monday I guess. They are excellent or you could ring them in office hours. Phone number and lots more on the website - just google Macular Society.

    I have suffered severely from pain on a few occasions over 35 injections. There are a number of causes and it takes time to work out which is/are to blame. Nobody should be in severe pain - just a little discomfort maybe. That's acceptable but uncaring medics aren't.

    All the best. At least the injections are available on the NHS - unlike pre 2008.

  • Thank god fire the injections

  • Hi Lynae, i feel so sorry for you going through this much pain , hopefully it wont happen again , im a bit cynical as i was having injections with eye infection , i had to make formal complaint ......i had both eyes done but couldnt cope with pain so asked to have inj week apart which they reluclantly agreed to , of course we are all very grateful for this treatment but wish all clinics sang from same hymn sheet!! i hear some say they have good injectors and some dont ....i had a 4 mth battle to find out whats wrong with my eye (as nobody had answer or cared) ...finally got to an Ocular consultant who has me booked in for CT scan on the 10th March ......will let you know the outcome .....you shouldnt have to suffer that much pain im sure ....if it happens again ...please complain or go to on call ophthalmic Dr...xxxxxx

  • Wow, thank you so much and God bless you!

  • Good luck for the 10th jjnan x

  • you should be pissed

  • yes i have been ..see how it goes on 10th xxxxx

  • Hi lynae, hope you're feeling better now x I've had similar a couple of times - when they scratched the eye with the eye clamp - no fun! I always take 2 paracetamol about an hour before inj which I find generally helps.

    I do find lately though that my clinic have been using a different anaesthetic and I've had more postop pain than usual. I will be mentioning it at my next inj on weds.

    Keep your chin up, they are horrible but better than nothing x

  • I do find that procedures change every time I go in. I am thinking about changing my Dr. I asked the girl for more numbing drops which she gave but usually when the Dr comes in he gives a couple more drops, however this time he went straight to the 1st injection of numbing med, no numbing drops. So confused

  • Maybe nurse told him she'd given you more so he didn't think he needed to?

    I think postop pain is usually more related to too much pressure on the clamp/ location of inj/ scratched cornea/iodine sensitivity. The numbing drops will have worked if inj itself didn't hurt at the time (at least, not more than the quick sharp moment of penetration . It's like having a tooth out - pain comes when anaesthetic wears off.

    All we can do is tell clinic our experience and hope they do their best to help us x

  • I'm not sure what this clamp is that a few of ya'll had mentioned, can you explain a bit furthe?

    I had some pain immediately following the injection. It felt like he pulled it out at a slight angle but the REALPAIN came 2 hours later and lasted for 13 hours until the steady flow of acetaminophen / codeine kicked in.

    Yes, I'll be stopping in to talk with my Dr BUT I'll be to afraid to allow him to do anymore injections. I'll have to find another dr. Scared of that too.

    Thanks so much

  • the rubber/plastic thing they put in before inj to keep eye open xxx hope your feeling better xx

  • My Dr Doesn't use it

  • There are different types of eye clamp. Some like a napkin ring, others like tongs etc. Your Dr must use something to keep your eye open and its this that can scratch your eye . You don't always feel it until anaesthetic has worn off lynae.

    I've had experience of having to decline a particular Dr and its not easy to do! My advice is tell them of all the problems so they have a chance to put right and give him one more go. If still no better then be firm that you want someone else - it can make all the difference and its your body ,

    Best of luck going forward x

  • I'll ask my Dr about the clamp because I've never felt or seen him use one. Unfortunately, he's the ONLY RETINAL SPECIALIST on my insurance! The cordinatural said I could see an opthamologist who can give injections. I may go in for a second opinion. Thanks

  • As far as I know we all have to have a clamp or they'd have to force my eye open for the injection!! I too have pain for at least 12 hours after the anaisthetic has worn off and I just go to bed and close my eyes - take a sleeping pill and eventually I do fall asleep and then I'm just sore the following day. Doesn't he give you eye drops to take home with you - to be used 5 times a day foe 5 days? It all sounds very weird and if I were you I'd complain to your Dr and try to get someone else. I hope this helps a little bit but remember you are not alone Lynde.😘

  • Dear Lynae,

    I am sorry to read your post.

    I am copying the link to our factsheet "Pain in the eye following intravitreal injections":

    macularsociety.org/sites/de...

    This may be useful as a discussion point with your ophthalmologist, prior to your next injection.

    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.

    Kind regards,

  • Rosalyn-helpline

    I live in the USA and can't get that 0300 phone number to go through......?

  • Dear Lynae,

    Please try ringing:

    044 1264 350559

    Kind regards.

  • I talked to my Dr and he said pain medications do NOT work after injections if issues occur. Is this true? He was more concerned with addiction!! I don't know what to think.

  • Dear Lynae,

    I am afraid that we are not medically trained.

    It is important to contact your ophthalmologist and pose this question to them.

    Kind regards.

  • It is amazing how techniques and methods differ from one practitioner to another. I must have had at least 6 different ones in 64 shots from consultants to specialist nurses. All have been faultless. As has been commented above the clamp is the only thing which I feel. I have never had my eye bathed after the injection. The iodine is just wiped away and after a single drop of chloramphenicol I am free to go.

    If you suffer discomfort during the injection ask if you can have a different anaesthetic, most hospitals will have at least one alternative. Also, you could request that the iodine be diluted.

    Another option is to ask if the injection can be in a different area around the lens. Practitioners tend to have their favourite spot but it might not be the most comfortable location for the patient.

  • Wow, very good information! I'm going to get a 2nd opinion later this month to see how they do it. I think Dr's SHOULD tell their patients what their about to do BEFORE they start, just as a reminder.

    Does your Dr allow your spouse to be in the room at the time of injection?

  • My wife has never come to the clinic with me!

    However, the injection should be done in a "clean" room (it cost Liverpool £10,000 to arrange) and so non-patients are unlikely to be permitted to avoid the transmission of infections.

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