I’ve recently joined the wet macula brigad... - Macular Society

Macular Society

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I’ve recently joined the wet macula brigade unfortunately!

MacularAnn
MacularAnn

It good to have a forum to chat with people already diagnosed, I am 69 with one eye wet and the other dry, I have just had my first Avastin injection and the dreaded iodine that wasn’t used sparingly, I found the injection more painful than I was led to believe so not looking forward to the next, I have been in a darkened room as can’t bear light in my eye, headaches and tummy pain. I have bough UV glasses for indoors and outdoors that are helping. My consultant says this glare problem is not related to macula degeneration, I have an astigmatism and cataracts forming on the eye too. Just wondered if anyone has this difficulty with this awful glare on top of wetAMD.

17 Replies
Hidden
Hidden

So sorry to her of your AMD. It is always a shock to be told the news. And indeed, this forum has been helpful for so many of us. I too find the injection themselves painful, though we are always told they are not. But they are for most of us!!! After my first one I walked out the clinic almost in tears. I was in shock because I had not expected to feel so much pain. Had I been forewarned I would have coped so much better. Tell the clinical staff about your experience and ask for less or diluted iodine and make sure your eye is washed well. Also ask for more anaesthetic drops.

As for the glare, I think your consultant is wrong to say it is not AMD related. Most people with this condition are very sensitive to light. Having said that, cataracts too add to the glare even though, oddly enough, they are supposed to help shield the retina from harmful rays to some extent.

I hope all goes well for you. Check your eyes regularly on the Amsler Grid which you can download from the internet. If you notice any further deterioration you must contact your clinic straight away. Remember, if you have any questions or any concerns, we are always here to support each other, as we speak from experience. The Macular Society has also been very helpful. So, chin up xxx

new2AMD14915
new2AMD14915 in reply to Hidden

Hi there, i agree completely with everything you say (ayayay). I remember, before my first injection an old man told mè it wouldnt hurt- i suppose he thought he was doing me a favour!!! You have to insist on having the EXTRA STRONG NUMBING DROPS. They do help a lot. It shouldnt feel like a punishment, but it does

Hi, thankyou for your response, I certainly will ask for more numbing drops, I agree that I too would prefer to know the truth and pain levels.

Are you on Avastin injections?

It’s early days for me so I a, researching like mad to see new treatments for the future, these seem to be Stem Cell in around 5 years.

I hope you are progressing ok, it’s not the nicest disease to have is it?

Thanks again my friend

Hi Macular Ann, its important that you ask for EXTRA STRONG numbing drops and apparently you can request a different injector. I will be doing this because ive had some very bad experiences lately at the hands of a newly qualified doctor.

MacularAnn
MacularAnn in reply to Hidden

Thankyou, for your great words and understanding, it has really given me a lift to know that I can have friends who understand, I like to ask lots of questions to the consultant but he is a man of few words but AMD is his specialist area, he is very quick sort of in and out like ‘don’t ask me too much’ and refers me to my doctor re. Head pain and glare problems.

I hope all is going well for you? Thanks again my friend

MikeG1944
MikeG1944 in reply to MacularAnn

Hi, Just because you have had one painful injection I'm sure it doesn't mean every one will be painful. I have had three now and hardly felt a thing; just a bit of pressure and a faint prick. Perhaps they use more of the pain relieving drops than some other doctors.

Yes, consultants don't seem to have the time to talk much and answer questions; you'll find the ones that test your eyes are far more talkative and will answer questions.

I do hope the injections work for you; they do for me and most others. Good Luck, Mike.

Hidden
Hidden in reply to MikeG1944

Hi Mike, you are lucky that you only feel the pressure. Out of 10 injections 8 really hurt and only 2 where I just felt the pressure. What does not help is that I have had 6 different injectors so far.

Catseyes235
Catseyes235 in reply to Hidden

That's not a good ratio. I've only had one really bad one, a couple of iffy ones but the rest bareable. My first one I didn't realise it had been done. I make it clear that I'm a wimp and need my hand held and lots numbing drops. Then I use loads of Hypomellose drops after so eye is well flushed out and iodine crystals which firm grittiness hardly form.

MacularAnn
MacularAnn in reply to MikeG1944

Hi MikeG1944, thanks for your response, and good wishes , I am getting the impression each visit and injector will differ, I do feel however that using too much iodine and not enough pain relieving drops needs to requested.

Consultants perhaps only want to discuss the particular stage of treatment but when you are new to AMD it would be good to have some reassurance.

Anyway I am now receiving this from this great support forum from the kind people just like you.

I hope all is going well for you?

Best wishes Ann

HI! This is a good forum to be on, lots of lovely people on it.

Yes the injections do hurt, I have never had enough numbing drops!!

Yes we do get a lot of glare problems with Wet Macular u fortunately, I wear prescription sunglasses all year round, get some funny looks in winter!!!

Keep on with the injections, even if it's not a very pleasent experience as they do help.

Best Wishes.

MacularAnn
MacularAnn in reply to RP1944

Hi RP1944:

Thanks for your helpful advice, I have already started wearing sun glasses most of the time and have sent for yellow for indoors and amber for out doors, they are fit over glasses, they look awful but they certainly takeaway the glare and give me relief.

My next move is to have my prescription glasses with the blue tint that the optician has suggested. Just wondered what tint you have?

At the present the glare is making me nervous about driving although my left eye has sufficient sight!

So thank you again for your caring response.

Ann

Hidden
Hidden in reply to MacularAnn

Hi again, Ann

I decided on getting light-reactive lenses with my varifocals a year ago. Unfortunately, I do not find them very useful when reading my maps or GPS outdoors, because as soon as the sun goes in just a little or walk in a slightly shady area I can no longer read them, nor are they efficient enough to cut out the glare on a sunny day. So for those outings I wear ordinary varifocals with over-sunglasses, which work better for me and they cover the eyes all round. Having said that, I am due for new lenses, which may improve the situation.

ayayay

Dear MacularAnn,

You have already had some practical advice and helpful support from other Posters, and on behalf of the Macular Society would like to reinforce some of their suggestions. You may wish to read some of our booklets (or listen to some in MP3 versions) on topics I may refer to, from this link:

macularsociety.org/resources

Certainly, eye sensitivity can be associated with both types of AMD, especially in conjunction with the other conditions you have, and it is important to protect your eyes from UV light and blue light which cause glare, as explained in our booklet on “Protecting your eyes”.

It is good that you are having treatment, and you may find our information Care Guide for Wet AMD/ Dry AMD, helpful in in guiding you through the stages of each condition.

We also have a Factsheet about Pain after Injections that may also be useful.

You may be interested to know that there are volunteer – led Macular Support Groups all over the UK, and you can find out about your local one here:

macularsociety.org/local-su...

If you then telephone the Helpline, or email us from the website, we can put you in touch with the local Leader.

Just to make you aware, we are currently offering free 6 month membership. This is a good way to keep up with current developments and you can join by following this link:

macularsociety.org/6monthst...

Please do not hesitate to contact us if we can be of any further help , either by email or ringing the Macular Society helpline which is open 9am – 5pm Monday to Friday on 0300 3030 111.

Kind regards,

MacularAnn
MacularAnn in reply to marianS

Hi MarianS,

Thanks for the information, my daughter has already been in touch last week when I was having tests etc, we found you absolutely great, it looks we all have great support from the Macular Society,! I have much reading to do!

Starting to get my head round things but get really tired after reading a lot, thank you so very much will keep in touch.

Ann

Hi Ann. I have a condition called CNV and have had 4 Eylea injections so far. The first 2 were painful and the second two were fine. It is hard to understand how they vary so much. The only difference was that with the second 2 the nurse had me do some deep breathing exercises first. May be this helped a bit but it all seems to depend on who is giving the injection. Also I suffer with the glare of outside light afterwards and always wear dark glasses after the injection. I wear sunglasses always now if the sun is out. I have become very light sensitive.

I guess I am just repeating what others have said but wanted to add my support as I found it so helpful at first when the kind people on here contacted me with advice. All the best to you.

2468G

MacularAnn
MacularAnn in reply to 2468G

Hi 2468G,

So really kind of you to post your experiences, it is such a great support, I am coming to terms with all that WetAMD has in store to the future and want to be able to be my normal active self🚴🏾‍♀️, I have been confused over the glare part as my consultant has said it had nothing to do with the condition, and sent me back to my doctor as he said I need a head scan as the glare should not give me the pain over my right eye and forehead.

I am wondering what type of lenses to buy with my prescription in, the optician suggest a lenses called Essilor prevencia that cuts the blue light?

I am really glad to have found all the lovely people on this forum, so grateful!

How can someone be called a consultant when they don't realise the problems of glare with AMD and especially after a scan.

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