Does anyone take supplements or herbal remedies to support the optic nerve?

I'm struggling with the feeling of being powerless over this disease and was wondering if anyone can recommend something that may stop further damage? I know the only proven method is lowering the pressure but it would be good to feel like I'm doing something that may stop further progression.

[Ktpink]

Hi there, I was recommended Gingko Biloba by a glaucoma specialist. I’ve been out of them a while so am going to resume. Apparently it boosts circulation and encourages blood flow to the optic nerve. Worth a try

[Hidden in reply to Ktpink]

Thanks, I will look into that one. I've also heard that kale is really good as well as blackcurrent supplements.

[Ktpink in reply to Hidden]

Thank you for those suggestions too, I drink Ribena every day so hopefully I’m getting plenty of blackcurrants! I will try anything to help. Go well.

[Hidden in reply to Ktpink]

No worries, it sounds like you're already on the right track then. I have also thought about cutting out refined carbs such as pasta and bread but will research further first. You too

[Hidden]

I've had a lot of eye procedures, and at least one more to come. I changed my diet last year to ketogenic due to other health issues. My eye pressures have fallen by around 30% since then. There is also some evidence that it provides neuroprotective properties.

I generally don't get on well with supplements so I try and get the nutrients I need through the foods I eat.

[Hidden in reply to Hidden]

I have heard good things about the keto diet. Since I have tube shunts that will (fingers crossed) keep the pressure in the low teens, I'm more concerned about progression in spite of low pressure. I also have a bit of soreness/inflammation in both eyes from time to time. Do you think the keto diet would help with this?

[Hidden in reply to Hidden]

I think it will. Different people have different ideas about keto - some think it's lots of meat and fat, which probably isn't that healthy. For me, it's about what I don't eat. I avoid:

All added sugars

All refined carbs

Potatoes

All grains and grain products (wheat, barley, rice, corn, etc)

All processed food

All seed oils (sunflower, rapeseed, vegetable, canola, etc)

I try and keep my net carb intake below about 20g per day (compared to 250-300g on a western diet). I do eat fatty meats, I use butter and lard for cooking, olive oil for salads. I eat lots of vegetables and dairy (although dairy is troublesome for some). I eat fermented foods for gut health.

Many of the products being cut out have an inflammatory element to them. Seed oils are particularly bad and can stick around in the body for many years.

I miss bread and I miss beer, and I do have to allow more time to prepare meals, but what price good health? Some will say I'm making bad choices (such as my cardiologist), but I'm literally betting my life on it. I've done the research.

Hope this helps. I have nothing to sell, it's just a brain dump of what I've learned over the past year or so.

[goodtotalk in reply to Hidden]

My son has been eating keto for a few months now, feels fantastic & is no longer ‘bloated’. He’ll never eat refined sugar again & only minimum carbs.

Interesting to hear about your reduced eye pressures on keto.

[Hidden in reply to goodtotalk]

So does he mainly eat fatty meats and a few veggies?

[goodtotalk in reply to Hidden]

Yes, pretty much eats as you described. Lots of olive oil too (defo no seed oils).

I don’t think I could make the change though as like pasta, bread & all veg & fruit too much... and hubby is an excellent curry maker!

[Hidden in reply to goodtotalk]

Interesting, apparently it can help with neuroprotection which could help the optic nerve and reduce inflammation which is important for the tubes to function properly. I'm going to try it can't hurt ay.

[goodtotalk in reply to Hidden]

My son is a real fan of the keto way of life & it’s effects. He’s done a lot of research, which I think is the key. Best wishes if it’s a journey path you’re going to go down.

[Hidden]

This helps a lot, thank you very much. I have always been very oriented towards dairy especially cheese and milk. I also enjoy fatty meats such as pork and duck. It feels natural to me to eat foods high in fat and salt. I find lean meats such as chicken breast very difficult. I'm not much of a fan of vegetables but I can do cauliflower, broccoli and carrots steamed. I feel like I would have a lot more motivation to cook if my glaucoma had been caught early but looking at your situation and what you've been through if you can manage it then I should have no excuse really. Have a nice day

[NewCardinal]

I've been taking ginko biloba for around 10 years now. It was recommended by my first consultant. I can't say it's done any harm or any good really. Glaucoma has progressed with loss of visual fields little by little. Only side effect I seem to have is ginko has blood thinning properties as a side effect and my eye surgeon asked if I was taking blood thinners. So bear this in mind if you are thinking of taking it.

[Hidden]

I don't think there's any guarantees with anything ay it's not a nice feeling when you start thinking what's the point I'm just kidding myself. It's been a bad day for me today thinking about the delay in my treatment, sight already lost and just my total lack of control. The reality of potential blindness is no joke and I have a ton of admiration for those who have come to terms/acceptance of this reality. I am nowhere near being even close to this and don't think I ever will be.

[Hidden in reply to Hidden]

Oh I'm sorry to hear you are having such a bad day today. I read your posts and you've had a real rough ride so far so your feelings are totally natural. You are right there are no guarantees with this disease and it's progression and I completely understand the feeling of having no control it does make you feel powerless. This is exactly how I felt initially myself.

Now I just carry on with my life and mostly don't think of my eyes apart from prior to appointments and then I feel physically sick. I live an active healthy life style and I guess I just hope it will stand me in good stead. I don't know how I got to this place from my awful feelings of despair at the beginning but somehow I did. I do have an amazing consultant which helps and I am a big believer in having hope.

Sending you hugs and I hope tomorrow is a better day for you .

[Hidden in reply to Hidden]

Thanks for your encouraging words they mean a lot. I was doing ok until my good eye went blurry then totally devastated as it had very good vision. I thought I had calmed down/adjusted after a few days but I'm just on a really bad loop now of thinking my life is over and there's no hope. I can't seem to give myself a break either as I should have gone somewhere else when my appointment was cancelled, other regional hospitals were open that I could have travelled to or could have got private health insurance. I know time travel is impossible I just wish I hadn't been so casual about my eyesight. I knew something was wrong hence why I made the appointment. I keep imagining myself as a blind person listening to the news all day and having food delivered. A lot of why mes today but yeah hopefully tomorrow is better.

[Jennymary in reply to Hidden]

I was registered blind in 2017, today I've worked 6.15 - 2.00, short break at home then just up to my local shops, yes I go through the why me, but having been successfully treated for breast cancer a few years ago, I go along the lines of I'm still here, still annoying people

[Hidden in reply to Jennymary]

I have read a few of your posts you've been through a lot and seem to have come out of it with a positive attitude. My main annoyance is with myself for not going somewhere else it would have been caught a lot earlier but never mind. What kind of work do you do if you don't mind me asking?

[Jennymary in reply to Hidden]

I'm a receptionist in a leisure centre, I work part time as I've lived with Chronic Fatigue Syndrome for 30 years

[Hidden in reply to Hidden]

I think there's always hope but I also know when you are in a really low place it's hard to believe there is any.You are being very hard on yourself about all the things you didn't do, noone could have foreseen the outcome. We all take our eyesight for granted, I'm sure none of us ever thought we would be diagnosed with glaucoma, I certainly never. You are clearly doing all you can now and that's what's important. You've joined this wee group so that's a big positive and there's always someone here to listen, who you can share your worries with.

You are allowed to say why me, you are allowed to feel sorry for yourself and it's okay not to be okay because hopefully one day you will be. All this takes time to come to grips with, some people get there quicker than others.

It's worse when you have your good eye and you think as long as I have that eye and then something happens to the vision in that eye, I guess it's a sort of grief in a way.

The majority of people diagnosed with glaucoma do not lose all their vision, they really don't.

I really do hope tomorrow is even a tiny bit better .

[Hidden in reply to Hidden]

It's the feeling of being trapped that's the worst ay. You brain keeps looking for way out but you know it's futile and just get annoyed with yourself for obsessing over it. Today is another day though my vision is still very blurry but I can watch The Chase back to back and hope it clears up soon. You're right shouldas and couldas are not helpful as the opportunity is gone and the current situation is exactly that. Hoping for the best and waiting it out...

[Redshoes15 in reply to Hidden]

I wish I could say something to make you feel better. Trying to be positive is hard I know, we all have good and bad days with this awful situation. I am lucky to have a good kind husband, but we are both 71 with no kids and no family living nearby. I often wonder how I would cope if I was suddenly left alone with poor eyesight, which could easily happen and then I try to push it to the back of my mind. One day perhaps someone will come up with a cure for glaucoma, but it won’t happen in my lifetime that’s for sure.

I hope this forum is helpful to you - it certainly has been to me and wishing you all the best. Take care xx

[Hidden in reply to Redshoes15]

This forum has helped a lot definitely but there's a lot of hours in a day. I live with a few others who know about my situation and they make helpful suggestions but I am still in denial to be honest and just wish this wasn't happening. I'm going to see a consultant tomorrow which I'm happy about although I know it's not likely they can just fix the situation hopefully there's some reassurance that the blurry vision will be gone soon. Thank you for your kind words and I hope you have a good rest of your week

[Hidden in reply to Redshoes15]

Morning Redshoes, how are things with you?I love your gorgeous profile pic, I can just see you doing your ballroom dancing. Do you do it just for fun or do you compete ?You were on my list of wishes I made for people the other week when I went to a wishing tree, its ancient and all gnarled and it's usually very good at granting my wishes for other people. X

[Redshoes15 in reply to Hidden]

Hi Witchie, thank you for granting me one of your wishes! I do hope it comes true ... Yes hubby and me used to compete with our dancing, funnily enough we had decided to retire from it at 70 as it was starting to be a bit hard on our old bodies. Then came the lockdown, which forced us to stop as everywhere was closed down. So when we go back it will just be more social and meeting up with friends to have some fun with it. It did keep us fit, shame my eyes have let me down as the rest of me is as fit as a fiddle!

My eye feels a lot better now and I am reducing the steroids, so will see what he says at the next dreaded clinic appointment. I think the main thing now is to get the pressure right and hope it’s been a success, if not it will be back on the drops I guess. You are very brave thinking about a second trab, but at least now you will know what to expect and you sailed through the first one, so no doubt will again.

We have just been for a lovely walk along the sea front and stopped at a cafe for brunch on the way back, sitting outside in the sun. I completely forgot for a while that I had glaucoma!

Hope you and Lu are enjoying the sunny days. Xxx

[Hidden in reply to Redshoes15]

Everyone else I made a wish for it appeared to work,so you definitely deserve it to work for you. I'm glad your eyes are feeling a lot better, steroids are so harsh but unfortunately necessary after a trab but as long as it's worked and your pressure is down at your next appointment it will all be worth it. Appointments are the worst, we probably all dread them. I would rather not have another trab but we all survived it first time round so I can cope with it again if need be 😣. I'm like you I've always been fit and healthy and now my rubbish eyes have let me down too.

You've had a lovely wee morning, it's so good to get out for a walk and a bit of sea air is great. I love having brunch out it's probably my favourite meal.

Hopefully you'll get back to your dancing and having fun and catching up with friends soon. It's been a long year and a bit that's for sure.

Lu and I have been along to store in next village buying fresh salad and strawberries and then we walked back along the beach. She's now snoozing on her sun bed as it's too hot for her. When it's sunny I just take her out in morning and evening as she has such a thick woolly coat.

I'm going to sit and read for a wee while in the sun🌞.

Take care x

[Hidden in reply to Hidden]

I have a tattoo on my wrist which says " Without hope there is nothing" I had it done years ago when someone I loved very much was very poorly and I needed something to hold onto. They are still here today and my hope paid off. When things are really bad we all need something to hold onto I think. I wish there was something I could say to help you, I really do.

I see you have a hospital appointment so fingers crossed the consultant can give you some reassurance. Let us know how you get on.

[Hidden in reply to Hidden]

I'm at the hospital now waiting for a second appointment. Apparently the eyeball is very soft so they are going to do some kind of injection. Has anyone else had this before? My pressure is still at 3 and still very blurry..

[Hidden in reply to Hidden]

Ok that was a bit scary. My lens was warped so they had to straighten it. It's ok now but have to take antibiotics and painkillers.

[Hidden in reply to Hidden]

Thank goodness they have managed to straighten your lens, I have never heard of that before. Will the blurriness in your eye clear up now ? How long are you on painkillers and antibiotics for? That must have been a totally terrifying hospital appointment, I hope you are feeling ok now and that the painkillers are doing your job and you aren't in any pain.

[Hidden in reply to Hidden]

I think I got that wrong it wasn't the lens it was the iris I think. He had to straighten it without touching the lens I believe this is right. It was an absolute shock as I thought it would be a routine appointment, next minute I'm signing a consent form and having a kind of mini surgery. It went well all straightened out but the pain on the ride home was excruciating, nothing helped and couldn't sleep eye pain is the we orst ay. I would advise anyone having a similar procedure to insist on staying in hospital and being put to sleep afterwards (honestly the pain is that bad). He did something to get the pressure up which has gotten rid of some of the blurryness but vision still not what it was pre tube shunts.

[Hidden in reply to Hidden]

Oh even just reading this is making me wince, no wonder you were shocked as not at all what you were expecting. I would have thought it was the sort of procedure that would have been carried out under general anaesthetic, you were amazingly brave, I definitely wouldn't have been. Thank goodness it worked, I hope the pain is more bearable now. Is it possible that the blurriness will start to get better gradually as after a trabeculectomy most people have blurry vision that can last for months. I think you've been through enough now,it's time for things to start going your way.How are you feeling in yourself now?

[Hidden in reply to Hidden]

Yes I thought the same re anaesthetic at least I'm guessing he just thought it was really urgent and he had to sort asap The pain is gone now, thankfully. I had to go to my local hospital today ( which is very annoying as they're the ones who cancelled my appointment before covid) but there was a weird bubble on my eye that looked alarming. Apparently it's nothing major though and they reckon the tube is working well. To be honest I'm not great as my vision has gone blurry again and they won't say whether it will go back to normal or not. Just really let down by the system as if I'd been seen before covid there's a good chance my condition could have been controlled with drops but now it's just one thing after another and more boredom of being at home all the time.

[Hidden in reply to Hidden]

I'm glad you aren't in pain anymore as that on top of everything else you are going through is just too much. Your local hospital definitely let you down big time previously and it must be galling to go there for anything now. It is positive that they did tell you the shunt appears to be working but really what you need is some reassurance that the blurriness will go. Did they tell you what the bubble in your eye actually was ?

You get to a stage when it has been one thing on top of another that you are just waiting on the next piece of bad news and that's a difficult mindset to get out of.

Inactivity definitely contributes to feeling rubbish about everything as there's nothing really to distract you . Hopefully all this is short term and your eye will start to improve as the shunt does its job.

Are you able to get out for a walk to help take your mind of things? Walking and working out are my happy places and I struggle if I can't do either as I just not a sitting around person.

Take care .

[Hidden in reply to Hidden]

Yes I felt really defeated going in there as I swore I would have nothing to do with them but since I didn't go private before diagnosis (another enormous regret) I really had no choice. I think more than anything I need to see a psychiatrist and talk through my anger and self-loathing due to the bad decisions especially not questioning the cancelled appointment and going somewhere else. They said the bubble is excess fluid that is draining while I sleep so it seems down. I don't think they can guarantee that the blurryness will go so possibly they don't want to lie and get my hopes up. You're right exercise would help and I live on a large rural property so can at least go for a walk. Thank you for your concern and kind words it really means a lot. This is the most challenging period of my life it's like I've had the rug pulled out from under me so many times now it's exhausting but I'm going to hold on as long as I can in the hopes of it getting better. Have a nice day

[Hidden in reply to Hidden]

I think talking to someone would definitely help you and put you in a better place, bottling things up does you no good whatsoever. You really are very hard on yourself, I never questioned failing a field test 7 years ago and accepted their "oh everyone fails it first time," hence I ended up being diagnosed late due to their incompetence and therefore lost vision. None of us is perfect we don't question when we should, we are all fallible but we're human and that's part of being human but what we then do is we learn from all the things we maybe didn't get quite right. I am always here to listen.

[Hidden in reply to Hidden]

It's very discouraging to hear that you also lost vision due to careless medical practice, in such an important body part as the eyes taking chances should not be allowed and doctors should be far more accountable. I had a bad experience with my local clinic several years ago when they gave me the wrong medication for a high faema so there were warning signs and I talked about going private for a long time but unfortunately didn't act on this. When they rang me and cancelled my appointment I was half asleep and just not really with it. Its all pie in the sky now though, I really appreciate your support its helping me to hang on and hope my vision comes back to normal.

[Hidden in reply to Hidden]

Mine was actually the optometrist who was incompetent and although I changed to a different practice the next bloke didn't give me a field test at all and in my ignorance I never questioned this either. It was only 2 years ago I went an excellent optometrist and she immediately diagnosed me with glaucoma and sight loss!!! We live and learn and I entirely agree with you doctors, optometrists etc they definitely should be more accountable. Hearing everyone's stories on here a lot of issues definitely have been caused by ineptitude but that said there are amazing doctors out there and I'm lucky as mine is one of them. Next time I go to a local wishing tree I will add you to my list of people I make wishes for.

[Redshoes15]

Good luck tomorrow, keeping fingers crossed for you 😊

[Redshoes15]

Oh the injection must have been a shock, I hope you are not in pain. I had to have a couple of steroid injections right into my eye which wasn’t nice at all, so I can sympathise. Hope you are OK.

[Hidden in reply to Redshoes15]

I'm ok now thanks for your concern it has been a rough couple of days but I suppose there's people worse off than me and this is hopefully going to all be worth it in the end.

[floki7]

I wish you well for the future, and hope there are better times ahead for you, it's no fun this disease, but you do come to terms with it, but will always raise it's ugly head when eye appointments come through the post !

[Hidden in reply to floki7]

I'm binge-watching The Chase at the moment as it's a show that you can still enjoy with bad vision. This is at least a distraction for now. Thank you for your kind words, I wish you wel with your struggles also

[trimt]

I read this a while ago and wondered whether omega supplements are worth a go. It's always interesting, but surely if it really makes a diffference then we would be told to do this by our opthamologist?!

optometry.org.au/workplace/...

[Hidden in reply to trimt]

It's hard to say ay because another study might have a different outcome. I think most doctors just look purely at the medicine side of it and don't really consider diet as making a difference.