Hey, I am 31 years old, freshly diagnosed with my second eye having CNV, and my first eye diagnosed 3 years ago... I am pretty anxious, but I guess that's part of the game... living with ambivalence of this prognosis. I have some questions on how you, fellow patients out there, regulate your diet, workout, and travel habits.
On diet:
Do you take AREDS (normally, it's only proven to work in AMD cases)? Do you drink coffee (I just realized my bleeding gets worse after drinking coffee and found this study on temporary choroid thinning through caffein: ncbi.nlm.nih.gov/pmc/articl...? Do you drink alcohol? How do you handle these dietary questions?
On workout:
I love weightlifting, but I am being told I shouldn't do this anymore because of hemorrhage risk. Also, no heavy shocks (jumping etc., some even say no running) because of detachment risk. Now I wonder, because I feel any pulse-heightening activity in my currently bleeding eye, should I at all work out during active stage MCNV. And how should I work out once the bleeding stops? How do you handle this?
On travel habits:
Do you travel to other countries with treated active bleeding? So, for example, a week after an injection? Is flying potentially worsening the bleeding?
Thanks a lot for your help in advance!
Best regards,
Paul
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I have a different condition to you I have CSR which has dogged me for years but a great improvement has been made through sorting my sleep quality out, cutting back on caffeine by 90% and eradicating sugar from my diet. I also lift weights and train calisthenics and cutting the volume back by just over half and limiting the intensity by leaving 2 to 3 reps in reserve has also helped dramatically change my eye health, no more going to failure! For cardio I either jump rope, ride a bike and jog at a steady pace on an indoor rubber track for10 to 20 mins as I feel so no more sprinting till Im ready to throw up which has also helped. I think the trick is to do just enough and not go too hard which is difficult when you love testing yourself training but absolutely necessary for eye health.
Hi. I have the same condition in my left eye only (although I live in fear of the right eye developing it) and I am 47. I developed myopic CNV in the left eye 2 years ago and had 3 injections then and needed 3 again earlier this year. I have read extensively on diet so take a Bausch optical supplement areds compliant. I eat plenty of fish and green veg. I have 2 cups of coffee in the morning and probably a glass of wine most nights. I investigated the latter but there doesn't seem to be anything concrete to suggest that this impacts on the condition, so I continue I would also add that I do not do any exercise that jiggles my eyes like jogging, but after checking with the doctor, I do yoga 3 times a week. Hope this helps as it is quite a niche condition.
Hi, I was recently diagnosed with CNVM in my one good eye. After 3 injections I can now see again. I am learning more about the condition and find all your comments useful. I’ve read that the multi vitamin pill is not recommended as it contains vitamin A and D which can stimulate bleeding in the eye. Has anyone else read this?
I haven't heard that. I would be interested to hear more if you find anything, as I take a heap of vitamins generally and wouldn't want to find out some are doing more harm than good 🥲
I’m not sure that diet, beyond being generally healthy and getting enough vitamins ACE is shown to help in degenerative myopia. As you say the AREDS supplement was tested (as nearly everything is) in AMD but I’m inclined to take it - it may slow down the eventual appearance of dry degeneration, but it won’t reverse anything and probably won’t have any impact on “wet” ie CNV. We tend to end up with both eventually (as I have).
I’ve always understood that exercise such as running, walking, most fitness classes etc was good, like anything that improves general health BUT that we should avoid anything that jolts or bangs the head because of the risk of retinal detachment - so no show jumping, or more realistically things like squash rackets, boxing, some bits of gym equipment.
When I was first having shots I was doing quite a lot of long haul travel, and my doctor and I agreed it was fine, preferably fairly soon after a shot when he couldn’t give me another whatever happened. But you should check that with the clinic you attend and of course must inform your travel (and health if relevant) insurer or you invalidate your policy.
Hi Paul. I have CNV too, I’m 22 and have been having injections since I was 17 where I had my first laquer crack related bleeds due to very high shortsightedness and thinning of the retina. This year I have had bigger bleeds which have turned into CNV, just had an episode on Sunday and am recovering from an injection.
It worries me so much how the condition will progress and I’ve done research into things to do and not to do but to be honest I couldn’t find much out there. I eat normally trying to have green veg etc. I eat spirulina powder mixed into yoghurt which is supposed to be a superfood. I asked one of the professors at moorfields about the AREDS supplements and he told me not to take them as there is such a high concentration of vitamins in them, like 1000% vitamin E that putting that much of it in your body can do more harm these good. He also said there’s no foods that will help with it or make it worse , and to just eat and live normally.
But I still believe there’s something I can do to stop it getting worse. I’m really curious to find out if there are any other foods or vitamins I could have to improve my condition.
Im really interested about what you said about coffee. The link to the article didn’t work but are you able to explain how it makes your bleeding worse please? Do you have more bleeds if you have caffeine or does it cause the leaky blood vessel to leak heavier?
I had a bleed on Sunday and had to cancel my holiday to Venice, due to go on Tuesday. Had an injection Monday and the Doctor said I could fly on Tuesday but he wouldn’t advise it, wouldn’t advise going on an airplane after any kind of eye treatment. I reckon after a week or so you’d be fine, I’ve done it before, but any shorter than that I guess it’s up to you.
Doctors have told me not to do running, going on rollercoasters and even not to rest my head on the window of the car as the bumps in the road can jolt your head and cause tears, holes detachment. I went on a bumpy car ride once and had a retinal hole a week or two later, I suspect it was related to it as it was the first eye problem I’d ever had.
I’ve always been too scared to share my story and reading this post has made me feel less lonely, there are other people out there! So thank you for sharing your stories 🙏 it can feel very isolating and I worry a lot about the condition getting worse and what life will be like in the future but my Mum always tells me to take each day as it comes and think of all the research they are doing into this as high myopia and it’s complications are on the rise.
Hi Amy! You are the first person whom I've come across that I might relate to! I'm sad for you but also happy to know I'm not alone. I am 22 years old with myopic CNV. My myopia is extremely high. I developed cnv very suddenly around 8 months ago. I had a sudden blind spot and ran to the ER. I have since gotten 4 injections in my right eye, but my vision has only returned to 20/50. Several weeks ago, I developed cnv in my left eye. This spot is in my central line of vision and is much larger. I've gotten an injection of Avastin and 1 of Eyelea. I'm so scared that my vision will not return and I will be permanently visually impaired. I am not able to read, drive, or function properly right now. Please share you experience and whether your vision has continued to improve over time.
Hi youngcnv. Thank you so much for your reply and for sharing your story with me. I’m so sorry to hear about your eye problems. It sounds like you’ve been through so much. I’ve sent you a private message via the ‘chat’ part of the macular forum which explains my story, would be great to chat more there .
hello I have myopic CNV in one eye- started last year and had 3 shots. I tend to do everything- horse riding, (no jumping), running, yoga etc. My optician is great at making sure I don’t restrict my life and stay healthy. My ophthalmologist says as long as I don’t do bungee jumps it’s fine. I drink alcohol moderately and also drink coffee.
I ve also been on long haul/short flights after an injection. The clinic said that the risk with flying isn’t due to the injection per se but due to the risk of infection developing a few days after and being far away from the centre.
Hope that helps. It feels scary when it all first happens but it does calm down.
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I would also add that I do not do any exercise that jiggles my eyes like jogging, but after checking with the doctor, I do yoga 3 times a week. Hope this helps as it is quite a niche condition. 
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