macula changes

[horseaddict]

Hi folks my magula degeneration diagnosis has remained fairly stable for 12 years.however just lately my glasses prescription has jumped up and I find my lighting in my lounge seems dimmer? and I struggle to read. I have my eyes tested every year where they photo the magula, they never discuss this with me? in fact I have to always ask..any change in the macula?.

Im thinking I would like to have a consultation with a macular specialist who can view that area and talk me through where/what stage im at,what the next stages will be and give me a full one to one appointment to disguss magula degeneration.

Would this be a waste of time? seeing as ive swotted up as much as I can on this subject, I take the eye supplements AREDS, live a healthy lifestyle and there doesn't seem to be anything else I can do?

Incidentally..ive read that spirovital theraphy helps macula sufferers?..this is a m/c that feeds oxygen into your system and is quite an expensive machine to buy.

Any help/advice would be appreciated as im stressed I may go blind.

thanks in advance

[rollerboy]

Hello horseaddict - much the same story here. I had no help whatsoever from any optician or opthalmologist or anybody else. Found out for myself about AREDS2, and am now investigating Saffron (which can replace lost pigment, apparently). I also experiment with foods and their apparent effects - all on my own. No help here either, other than finding out I'm not the only one! I don't believe you go blind per se, your peripheral vision remains. My main problem is mistiness that varies daily - some days slight, others quite dense. I'm still trying to equate this with diet. We have always followed a 'healthy' diet anyway, but I've beefed up on greens (like spinach) and oily fish (like salmon - goes well with spinach). Half an avocado every day. At least a half walnut every day. Stuff like that. But there's nowhere I can ask a question and get an informed answer - frustrating! I don't think consultations will help much - you might get a few dietary tips if he/she is interested. Hardly worth the cost unless you count peace of mind that you are doing all you can.

[horseaddict in reply to rollerboy]

Thank you. yes im all spinched and kaleed out. ive added both items to my daily diet, I have a handful walnuts and brazil nuts and apparently? cod liver oil is good too,although yet to add that.You are right of course, to get proper answers is proving difficult. maybe because theres no answers?..i looked at spirovital therapy. these machines oxygenate the body, start at 3k..i wondered if anyone can back that up that it helps macula degeneration.

[Catseyes235 in reply to horseaddict]

The jury is out but you could just add Macushield or what I take ...a much cheaper Bilberry extract. Oxygenating the body sounds like a money making scheme. Too much oxygen is actually poisonous! Yes I too have to ask about lighting and brightness etc. I’ve changed my main sitting room to a LED daylight bulb which has really helped.

[Fishing1949]

I have amd (wet in one eye and dry in the other). Currently I have injection every 14 weeks. However to monitor the situation I have interim check up and OCT scan with my Consultant. The advantage of this is that I am able to discuss any issues or concerns with my consultant on a one-to-one basis. I would strongly recommend a consultation which might give you some assurance and advice as to the way ahead. However you might need to consider this on a privately funded basis.

I hope this helps.

[horseaddict in reply to Fishing1949]

Thank you. yes I know I would have to pay for a one to one and have looked around for the right consultant to see.Nobody is listing macula as their specialist subject and im reluctant to have a consultation where I just get advise on dietry help as im already on the case with that. thank you for your response.

[Fishing1949 in reply to horseaddict]

It depends on where you live but You could try your local Spire hospital

[RosMacularSociety Partner]

Dear horseaddict,

Please contact us to discuss your concerns.

The Macular Society Advice and Information service is open 9am – 5pm Monday to Friday on 0300 3030 111.

Kind regards,

[horseaddict in reply to RosMacularSociety]

thank you

[RosMacularSociety Partner in reply to horseaddict]

Dear horseaddict,

In terms of lighting, I have copied a link to our lighting booklet. Please contact us if you would like suppliers details:

macularsociety.org/sites/de...

In addition, this link may be of assistance:

housinglin.org.uk/_assets/R...

We can also be contacted regarding this and your other concerns via:

[e-mail]

Kind regards,

[pathologicallygill]

HI, I have the same condition which too remained stable from late adulthood right through to 49. Then it started its dropping off, a diopter a year taking me from -7 to -12. Ive now had a few more stable years. I do notice more of the sight issues as the seasons move, winter with its lower ambient light being problematic. I am investing in led lights regular placed in the ceilings as we modernise in our home to ensure the ambient light within the house is good as i find this most helpful rather than a pool of focussed light. Hope this helps.

The only other thing which I tell my daughter who has a large astigmatic myopia is to start HRT at pre menopausal years, i believe that would have helped keep the muscle bands stronger around the eyes. I think medics would poo poo this idea but that is what I wished I had thought about.

[horseaddict]

thank you

[rollerboy]

Hello again horseaddict - you're pretty well up to speed with the diet thing then - thanks for the cod liver oil tip - not heard that before. I'm picking up my first course of saffron gelules tomorrow - they act slowly too, probably months before I get any result - in theory saffron replaces lost pigment and prevents losing more. Few consultants are interested in AMD as it's the poor relation - only 3% of people get it. My guy removed a cataract, and when he saw I had AMD in that eye he just tole me I had it, and goodbye. Effectively telling me there's nothing he could do about it. Great! I thought of private consultations too, but there's no-one who specialises in AMD anyway. At least not that I've found. Research into low-level laser treatment is the most promising - sort of pressure-wahes the macula - but availabity to us erks is years away ... so bat on doing what you can. I see that there's an offer to listen to you by phone to America - if you do that, maybe share with us on here how you get on?

[horseaddict in reply to rollerboy]

I doubt I will be calling America ha.ha..we need help here in the UK. where did you find the info on saffron maybe I should look that up....I didn't think laser treatment was an option, I know they are doing trials with stem cells on mice etc...when you think about it..life without sight is no life at all in my case. im active 7 days a week with my horse and cannot imagine life without that. im so scared of this degeneration. Peripheral vision wont allow for anything. 12 years ago I was diagnosed and to be honest I didn't give it much thought at that time as I wasn't wearing glasses for a long time after that. We only have the same amount of information now as we did then. And my optician informs me that glasses strength are totally separate from macula changes?..so we wont be getting any chit chat on our dying shrivelling up eye sight . have you checked out spirovital theraphy where a machine oxygenates your body, they claim it helps macular degeneration?..prices on the machines start at 3k...

[rollerboy]

As usual, all useful stuff comes from America, or seems to - I heard of a company named 'Persavita' and their product called 'Saffron 2020 Pro - there is a lot of useful info on their site, in particular that saffron replaces lost pigment, which AREDS2 does not do, and they recommend their formulation that is designed to supplement AREDS2 rather than replace it. It's pricey at about €65 for 60 days supply, but my problem is 3 weeks in transit. So I've been looking for a similar article here in France (I live in France), and my local Pharmacie found one today, and ordered it - should arrive tomorrow. I imagine that UK Pharmacies offer the same service. Turmeric also helps with pigment replacement, but is indigestible on its own - a good plan there is curries that contain it, and I'm looking into that as well. I like curry anyway ... another good point is that saffron especially fights depression and anxiety as well ... as a bonus it is an effective slimming agent in that it reduces appetite ... handy stuff all round! The main thing is that we can help ourselves - I ain't giving up ... !

[horseaddict in reply to rollerboy]

hi, hope you don't mind me asking. you said you no longer read books. I assume your eye sight doesn't allow for it, my question..how long ago was it that your eye sight started to falter?..mine only just started and I cant seem to get an answer as to how long it takes to deteriorate. also..ive tried to find Andrew sauls book on eye noutrician for macular degeneration but cant find the book that specifically includes the eye section. in the meantime im still swotting up on nutrican purely to slow down the degeneration.

[rollerboy in reply to horseaddict]

Hello horseaddict - it's hard to get any information of any sort! However, my left eye failed 11 years ago as a direct result of over-use of ever brighter lights to photograph the retina by a High Street optician. I had to refuse as it was hurting. 10 days later that eye went from normal to total loss of central vision. I had a cataract removed from it 5 years later. My right eye also had a cataract, so my vision from that eye deteriorated over 4 more years - I could still read books, but a bit blurry. That cataract was removed 20 months ago - and I was then told I had AMD in that eye. Within 6 months reading books became too difficult - likewise letters, newspapers, and magazines - so I resorted to low-vision mode on computers, which has served weil for another year so far. But I must stress that this seems to vary widely from one person to another. Experiences vary, so don't imagine mine will be yours! I am still waiting for the Saffron pills to arrive, but they will act slowly, so not expecting a miracle! But a slow plus is better than a slow minus!

[horseaddict in reply to rollerboy]

Aww thanks for replying. You sound in a right old state. But. You can still type on here so I'm hoping there is still going to be some sort of activity when I go down your path???..I'm told I have a cataract behind my weakest eye too.the optician just pointed it out matter of factly..I'm 64 and hoping at least to continue my riding for another 5 years? Is that too optimistic I wonder.mi just wished there where some sort of guide lines?.like you.i feel scared and alone with this stand alone blindness in the pending tray!.I've tried to locate an Andrew saul book on eye nutrients for macula degeneration.

[horseaddict in reply to rollerboy]

hi there, I have had a look at saffron 2020 and it seems they do a saffron 2020 pro and saffron xp. all have different levels of ingredients. the 2 important ones I think? being lutein and zeaxanthin. saffron can be purchased in the uk im told via an online email conversation I had with the Canadian company..will you be taking the saffron pro as well as the areds2 .?

[rollerboy in reply to horseaddict]

Hello horseaddict - yes, I have received the Saffron 2020 Pro, I think from the UK as it arrived in 5 days rather than 3 weeks. 90 capsules for €50, less than I thought. The French stuff I tried to get isn't suitable at all - Persevita are the one and only source of saffron meds intended for AMD. I take one with breakfast each day, as well as the AREDS2 gelule with lunch. The AREDS2 provides the lutein and zeaxanthin - the saffron adds extra bits and works on a different (molecular) level. Now I have to be patient for several weeks while things build up ...

[horseaddict in reply to rollerboy]

My optician advised not to take more supplement than the 1 a day areds.she said if I take more I could get crystallization???..of the eyes?..I'm still researching the saffron so will wait with baited breath to see if you get a result...how will we ever know if taking these supplements work?..its a minefield of what ifs for all of us victims of AMD.. good luck with the saffron.fingers crossed for you sincerely.

[rollerboy in reply to horseaddict]

I'd agree there's no point at all in taking more than the specified dose of AREDS2 formulation (under several different brand names). Counter-productive. But the Saffron 2020 Pro is designed specifically as a supplement to AREDS2 - it does not include anything already in the AREDS2 - only the items needed to maximise the effect of the saffron. Persevita have done a lot of work on this, their efforts and results are on their website, so I go along with them.

[Spottedog]

After reading all comment on supplements to help the eye with AMD I am amazed. I didn't know there was a link between loss of pigment and AMD. I will need to find out more about this correlation.

I have been including micro-greens into my daily diet. I've noticed an improvement in my eye with wet AMD. I was not able to read any print. The blurring of each word stopped me from deciphering it. However since my last Eyelea injection and my inclusion of micro greens in my diet I am able to read words with the AMD eye. I'm going to read more research regarding mciro-greens and their connection to eye health.

[horseaddict in reply to Spottedog]

if you look up AREDS2..these are eye supplements with bigger quantities of concentrated lutin etc ..apparently proven to help slow down AMD by upto 25%

[Catseyes235]

Sorry if this has been suggested already as haven’t read all the replies but is there any possibility of cataracts forming? My brother with AMD in one eye and starting in other has just been diagnosed with this - not bad enough to be operated on but bad enough to stop night driving and require more lighting. I have also had to change to brightest daylight bulbs which have made a difference even if friends and family remark that it’s awfully bright!

I also have a good diet but one doc said you couldn’t get whatever you need from diet so I do take a bilberry extract with zeaxanthins (when I remember along with cod liver oil etc) which is loads cheaper than macushield. Hope you find some answers.

[horseaddict]

Thank you. I'm at the exact stage you are.

[RosMacularSociety Partner]

Dear horseaddict,

I have just been reading through your posts again.

In terms of lighting, between the ages of 20 and 60 we need approximately 3 times the amount of light to see the equivalent thing. Add on to that extra ageing and any level of sight impairment, then even more lighting is needed to see the equivalent. For task work, an angle poised lamp positioned below eye level can be useful. Avoid halogen bulbs for task work lamps as they get hot and opt for natural daylight or LED bulbs instead.

I have copied a link to our Nutrition booklet:

macularsociety.org/sites/de...

In terms of spirovital therapy, unfortunately we have not seen any trial evidence that backs any claims.

Please do not hesitate to contact us if you would like to discuss anything further.

The Macular Society Advice and Information service is open 9am – 5pm Monday to Friday on 0300 3030 111. Alternately, you can contact us via: [e-mail]

Kind regards,

[horseaddict]

thank you Rosalyn