Two weeks ago I went to the opticians because I had problems with flashing lights in my left eye when I blinked.
It turns out it was floaters so I was sent away. I went back today as I keep getting a bright white flashing light which I had not had before. The optician examined my eye and said that my retina was fine, however she did notice a loss of pigment in the back of the eye. She took pictures and showed me and you can clearly see small spots of pigment missing compared to my pictures one year earlier where the eye looked perfect. I am only 23 years old, 24 on Friday. She said if it gets worse it will eventually cause loss of central vision.
I am so upset and scarred. I currently drive and have a job and live by myself and have a gorgeous neice and nephew and I’m very independent. All I can think is how all of these things will be taken away from me as it progresses and it is something I’ll have to live with for such a long time given my age. It is making me question the point in anything. I may seem dramatic to everyone here who has already been diagnosed but I googled it and it doesn’t seem a good outcome.
I guess I just need advice on how I can slow down the process. Any words of wisdom on how fast it progresses. Any miracle cures anyone has taken. Supplements people swear by. Coping mechanisms. Empathy as they too were in their 20s when this problem arose. The optician wants me to have pictures taken yearly, so I guess that’s a good thing, but a year isn’t really that long when I think about how much this may affect my life and how long I’ll have to live with it.
Please can someone help as I just don’t want my life to be taken away by this condition 😔
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BLW95
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I would recommend you see a retinologist to diagnose your condition. An optician is not qualified to deal with your situation. An Opthalmologist is certainly more qualified than an optician, but your absolute best choice is a Retinologist. Do some research online and see if you can find one. Then take notes and ask lots of questions. I have been seeing a Retinologist for 6 years now. I get Eylea injections approximately 3 times a year and the vision in my affected eye has remained at 20/40. Good luck ... I would be intested to know how you mange. Email me at mejimas@mts.net.
I'm sorry to hear that you've been left to worry about this. I agree with the other posters - get to see an opthamologist. If the optician won't refer you, try your GP (assuming you're in the UK) or a different optician.
My vision is always better if I get lots of sleep, don't drink alcohol and stay well hydrated so you could try those.
I once had flashing lights and it turned out to be a PVD which was annoying but actually not that big a deal. At the time, however, I was Googling flashing lights and it was scaring me silly.
You need some peace of mind and a more thorough check than that which an optician can do.
If it is white dot syndrome, it looks as if most generally it will resolve itself. You really need to follow the rest of the advice here and get a diagnosis you believe.
I get photopsia with my macular degeneration.
I don't suppose trying AREDS will do much harm, except I'm not so sure about the vitamin E they use in the combination.
Until you know for sure what the condition you have is though, the imperative thing is to get that sound diagnosis as soon as you possibly can.
Yes please do see your GP. It is the only thing to do. In fact it was my opticians who wrote to my GPs recommending they refer me to the eye hospital when they spotted a potential problem. I would avoid that optician know who is I think arrogantly predicting some possible outcome which absolutely may not be the case.
(I’d also check with any hospital what the remit of the opticians is. Yes they can spot problems but they are not responsible for further medical care) . Good luck.
Hello BLW95. It is scary, yes, but much more manageable than you may think. There is a medication known as 'AREDS2' based on massive research by the American Eye Institute over many years. The formulation is produced by several companies. originally by Bausch and Lomb (Preservision) but others too. Google AREDS2. Nothing can cure it or reverse it as yet (it's called 'macular degeneration' or 'AMD' for short) but AREDS2 slows it down. I do not understand why it is not available on the NHS, but you have to buy it yourself. I never buy on the net, always from a Pharmacy, around £36 for 60 gelules (2 months supply).
Avoid too much light. Wear good sunglasses that block all blue light especially. I use 'night driving' glasses that do that rather than just use dark shades - which are no good on gloomy days. They sharpen contrast just that important little bit.
Use 'low vision' settings on your computer and electronic devices - you may find reading a whole lot easier with white on black rather than black on white. Depends how far the AMD has progressed - it is very slow anyway and you can slow if further with the AREDS2.
You don't lose peripheral vision - just the central vision - gets misty and blurred - so you can get around OK. Your other eye may or may not be affected at some future time. You have many years of relative normality ahead. I've had it for 11 years and in both eyes and I'm still reading and writing and getting about fine - still driving too, but that needs care!
I wasn’t given a proper diagnosis as such. Just told that my flashing lights are floaters and that there is a loss of pigment in the back of my eye that could eventually effect central vision. She said the only way to try and slow it was through a ‘healthy lifestyle’. But I had my pupils dilated two weeks ago when I first noticed the flashing lights and no one commented on my pigment and when I’ve had it dilated yesterday, thats when she spotted it.
I’m no optician but she showed me my pictures yesterday next to my pictures fr a year ago and you can clearly see little white spots where the pigment has gone.
I’ll ring my GP today, see if they can fit me in and refer me. Otherwise I’ll have a look whether there is someone local to me; really it will have to be a referral though as I don’t have a lot of spare money each month, so I may have to wait some time 😔
When I’ve googled I’ve come across Macular Degeneration and that’s what I’m thinking it is based on the opticians comments about me losing central vision 😔
Doesn’t help that I suffer from health anxiety, so situations like this are made 1000x worse by my own brain.
I’ll try and find a specialist to go and talk to. I’m in such a state of panic 😔 thank you everyone for replying.
Sending you a hug x definitely get a referral from your gp. There are lots of eye conditions with similar symptoms and effects but the treatment and prognoses can differ greatly. I feel your optician was remiss in giving you such limited info. ( but often seems to happen).
Once you get a diagnosis contact the Macular Society who can give you advice and support and have buddies who know what you're going through. Come back here too and let us know how you're doing, we're all here for each other .
As all the others have said you need to see a specialist, not an Optician. If your GP will not refer you go straight to A&E at your local hospital, they will always have an Opthalmologist on duty who will see you while your there.
And don't panic; we all tend to when we get told something is wrong with our eyes, it's normal but most of the time treatment is available. Let us know how you get on.
Thanks everyone for being so kind. I’m honestly in a state of panic but your kind words are really helping. I’ve phoned my GPs practice today and no appointments unfortuantly. She said they open at 7.30am tomorrow but most people think it’s 8, so if I phone at 7.30 I should get an appointment straight away.
Other than that I could always ask my grandparents to help me out with seeing a private specialist until I could pay them back.
With referral times of six - 8 weeks do you think this is an okay time to wait? My optician didn’t want to do pictures again for another year, so will the referral time be okay? I’m just worried about how fast things might progress.
If you can see a specialist privately, I would do so. At least you wouldn't be hanging around for months agonising over what the problem could be. Your eyes are precious but until something goes wrong, we take them for granted. Good luck and please let us know what happens.
This forum has such wonderful caring members, you couldn't have come to a better place for support and advice.
Please let us know how you get on. My heart goes out to you. I got AMD, in one eye at 75, and I thought it was the end of the world: so I can barely imagine how you are feeling as you are so young. I am turning out to be Job's comforter! Sorry! All the posts in reply to you are so good! Take all their advice; big hugs!
Yes! I had to go private for my first appointment for treatment having been squeezed in at an eye clinic: I was promised subsequent follow up on the NHS, which I have had, and very grateful I am too; but, boy, did I have to fight for it. At the moment the NHS is overwhelmed. But things ARE improving all the time.
Do not despair. I found the Macular Society (Helpline 0300 3030 111) invaluable in their help to me.
Whilst research on the internet can be a boon, equally so it can really scare you unnecessarily !!
I doubt it’s AMD at your young age that’s rare period. It’s more likely genetic or progressive. That doesn’t mean it cannot resolve or be treated. I am 26 and had a bleed in my eye last year. It was idiopathic meaning no cause. I still see 20/20 both eyes with a blurry sport in the one with the bleed adjacent to the optic nerve. Barely noticeable. I have been under control for over a year now. A good retina specialist will help you. If they offer shots in the eye for any reason take them early. I was scared to do it and that resulted in this blurry spot because I waited a month if I had done it when recommended on the first visit I wouldn’t have it. Do not wait. Not even a week. Go tomorrow or today it doesn’t matter how many you have to call.
Yes you should get this checked our, daughter had loss of pigment and it was very serious, Ocular Melanoma, this is not to frighten you but to spur you to see the right people. Hopefully it will be something less serious.
My brother and I have macular degeneration resulting from severe nearsightedness which is rarer than age related degeneration. The most frustrating thing for me when I really had a worsening in vision was that retina specialist could not tell me how fast the disease would progress. Get education, do research, live a healthy lifestyle. Macular disorders rarely result in total vision loss. Keep talking to us. We all want to help and have been through the grief of diagnosis with eye disease.
Please do not Google, and do not read WiKi articles!
The advice given is right in that you should seek a consultant's formal diagnosis. Opticians can sometimes scare the life out of people, or sometimes even get things wrong - not all, but some can. We have had enough calls from horrified people with who have been wrongly given the full Guide to Macular Degeneration by an Optician.
A retinal specialist will advise on exactly what is going on.
A GP may not refer you very quickly, so be prepared for a wait.
We can assist with giving you some names of private retinal specialists in your area if you decide to go down the private route. An initial consultation should cost no more than £300. Do please email us at help@macularsociety.org if you would like us to seek out some contact names for you. Note that we do not make recommendations.
Alternatively you can give us a call on 0300 30 30 111. We are open Monday to Friday 9am to 5pm.
First, I am a male many years your senior. I have been diagnosed with wet macular degeneration and presently am receiving treatment for that condition. The treatment is Eylea injections into my eye. Wet macular degeneration I am told is a relatively new diagnosis. It has been around for quite some time. My suggestion to you is go to a Ophthalmology Specialist. Your optometrist is neither equipped nor experienced to deal with this. I have had this condition which came on suddenly four years ago in my right eye. It has caused severe distortion in what I see. Recently it progressed to my left eye and obscures some vision in that eye. In total, my vision is compromised. The Eylea injections in my right eye have stopped the progression of the vision loss and I believe may have improved my condition somewhat. I take an eye vitamin called AREDS-2 (2 per day). It was suggested to me many years ago by an optometrist and to my detriment I unfortunately ignored his advice years ago. I now take the vitamins faithfully every day as directed. Are they helping? Who knows? but anything I can do I will do. Above all, I cannot stress this strongly enough, go see a Specialist NOW. Feel free to contact me at any time. Time is of the essence and from my experience treatments by a professional do HELP and I suspect treatments have helped me somewhat.
P.S. I receive eye injections every 5-6 weeks. They sound horrendous but when administered properly there is no pain involved whatsoever. My doctor starts with numbing drops, then an injection below the eye and then minutes later the actual eye injection. "No pain". The only drawback is a scratchy sensation post-injection which goes away completely following a night's sleep. I have experienced some floaters which go away in 1-2 days. Hope this helps but above all see an eye specialist immediately now - don't wait one year to see your optometrist who is not equipped for this situation.
Thank you everyone. Everyone is stressing the urgency of going immediately/now. Will I be okay to wait for a GP referral? Potentially 6-8 weeks. Will I be okay over the weekend?
It’s my birthday tomorrow although I’m hoping to get a GP appoinment tomorrow but if he’s not interested/advises that there is a long wait, my family have said they’ll help me pay to go private... will I be okay waiting until Monday to start ringing around?
I know this probably seems a silly question but I’m feeling very very anxious about it all and worried about the immediacy.
Hi, yes you will be fine to wait until next week, though I can see that the optician has made you anxious. Medical googling is something that we all do, but that none of us should. Basically if we googled any list of symptoms, we would all think that we had numerous conditions, most of which we don’t have. I sincerely hope that your Drusen turns out to be nothing to worry about. It can often be harmless, there are different types. One type is linked to age related macular degeneration, As far as I know not the kind affecting younger people. It does make sense to have an appointment with an ophthalmologist though. Hope they will be able to put your mind at rest. Take care🌷
Thank you. I hope it’s nothing too serious that will affect my vision. The optician has made me very anxious, all I can think is how my quality of life with reduce significantly. She did say it’s usually in people of an older age than myself, but she said it could be to do with my prescription. My affected eye is -6.5 and the non-affected eye -7.00 and I wear -8 in my glasses, which I know isn’t a good prescription but it could be worse.
I’m terrible for medical googling and it just gets me worse and all worked up but then I also hate not knowing what is going on.
Hopefully I can see my GP tomorrow and he can get me referred ASAP. Thank you for your kind words.
I went to the doctor’s this morning and he wouldn’t refer me as nothing had come through from the optician on my most recent appointment and the pigment findings, however the first appointment that diagnosed floaters was there.
The doctor commented that it was ‘odd’ that no one had spotted pigment loss in my first appointment where floaters were diagnosed and when I said that as soon as that info came through from the optician I wanted a referral, he was like ‘well, it really depends on what can be seen from your photos’.
So I chased the optician and she told me that she would refer me but that the wait was 2-3 months because its ‘routine referral, not urgent’ and he ‘would probably just say there is nothing we can do’.
So I’m feeling even more negative about everything. I’m not sure how the optician can be so dismissive when this is something which if diagnosed will change my future significantly and really impact my quality of life, and as i’ve mentioned before, I’ve only turned 24 today.
I don’t know what to do. I want a proper fdiagnosis because A part of me is really holding out hope that the optician is wrong, and another part of me just wants the diagnosis over and done with so that I can be educated by professionals, research, manage my life, attempt to slow it and come to terms with what a really big deal this is. I really want someone to tell me roughly how long I likely have left before the eye becomes severely affected.
But I’m just worried about the costs associated with private.
Would you wait the referral time or find the money to pay private?
Hi BLW95. I don't know where you live but do you have a eye hospital near you. If so, it may be worth going to the A & E and explaining things there - you may be seen much quicker by doing it like that. I've done that in the past when I had concerns about my eyes. All the best. xx
You do not sound dramatic at all. I am so sorry to hear about all you are going through. I know all sorts of things start rushing through your mind. I would recumbent that you see a Retinologist as well. Because it does not sound like they even gave you a diagnosis of what you may be dealing with. I am on this thread and I have a different disease. So I have Eyela shots in both of my eyes every 6 weeks. I have angioid streaks which are basically treated the same way as if I had macular degeneration. I find this thread so helpful. Take a deep breath, don't get ahead of your self. I know easier said than done. Loss of vision is so hard. I now have had 7 hemorrhages and loose a bit more vision which each one. I no longer can drive, But I am super independent, live alone and still paint and draw, I have just needed to be easier on myself. I can't work the same way I did, but I am still working on my art. I am figuring out new ways to do what I had drawn before. It sounds like you have support around you that is good. Please continue to share how you are doing. It can be very hard for others to understand what you are going through. To them you look no different and so they can misinterpret your frustration, sadness and grief. But, find someone who can give you answers. Knowledge is very empowering. Thank yo for sharing. xoxo What country do you live in?
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