CSR has changed

[CSRScotland]

Hello, I’m now 8 weeks into my first occurrence of CSR and last week my vision has changed again. I’m not sure if the area affected is now bigger or whether the fluid has just moved. I’m finding that again it is affecting my vision more and screens and reading are really uncomfortable. Working at Screens especially excel spreadsheets and copying data from one place to another has been really difficult but previously I could watch tv comfortably. I’m now back to having much more headaches again when looking at any screens and my general vision is more affected than previously.

Previously only horizontal lines were affected but now vertical are also.

Can anyone else share their experiences of changes in their CSR? And comment on what I am experiencing?

I am due to have a follow up optician appointment next month to see how the fluid looks, that will be 3 months since I first noticed it.

Thanks for any advice/ experiences you can share

Xxxxx

[ramsayn]

Hi, I’ve had similar attacks where it’s got worse before it gets better. I think it’s due to more fluid in the area. Not sure where in Scotland you are , but Ross Hall offer scans privately and I’ve made use of that in the past in between NHS appointments.

Hope your vision clears up soon, I’ve been dealing with CSR for about 3 years and while I’ve lost some colour vibrancy and visual acuity in my eye, the visual distortions have always cleared up.

[CSRScotland in reply to ramsayn]

Hi ramsayn

Thank you for your response. I guess the worst thing about this is not knowing what it will lead to. I will be back at opticians start November to redo the pictures as this will be 3 months since I noticed the first change. I guess they still might not refer me at that stage? Will they leave me 6 months to see if it clears itself?

I’ve not noticed any colour distortion but I do see a dull smudge on the amsler grid.

Thanks

K

[180164]

Hi there I do sympathise with you I'm into my 12th year with chronic csr. Hopefully when you see specialist they will offer treatment I have funding for PDT. Keep us posted regards mandy

[CSRScotland in reply to 180164]

Thanks Mandy x

[Jogie]

Hi,

I've had CSR for five years now. In my right eye, the distortions tend to be horizontal and in the left eye they tend to be vertical. I find that the distortions occur when the fluid levels are changing. They are one of the most annoying things about CSR and I agree that spreadsheets are very difficult to work with during a flare up. One thing I do is I change the cell border and 'inner' colour to white so that the cell outlines are not visible. This does make it trickier to know which cell you are in but I get used to this and it gets rid of the wavy line problem.

In terms of leaving it to see if it resolves on its own, I have found that two years seems to be the point for me where permanent scarring takes place. If the fluid resolves before that, there doesn't seem to be any permanent damage in that spot. If, however, the fluid doesn't resolve then the two year mark seems to be the point when the scarring occurs. This may be different for each individual.

Injections haven't worked for me. PDT (Photo-dynamic therapy) did work and has stabilised the fluid in one eye. After lots of experimentation, I have also found that there is a clear link between my fluid levels and my food/drink intake. If I cut out alcohol, processed foods (including supermarket bread) and refined/added sugars, and increase fresh, colourful fruit (blueberries, apricots etc.) and veg (red peppers, carrots, spinach etc.) lean meats, fatty fish and complex carbs (brown rice, oats etc.) my fluid levels decrease. I don't know whether it the food/drink intakes by itself, or the fact that when I eat/drink healthily I sleep better and take more exercise. Whatever it is, the healthier I make my lifestyle, the less severe my CSR is. Unfortunately, it's taken me five years to realise this and act upon it.

Good luck x

[CSRScotland in reply to Jogie]

Hi Jogie

Many thanks for taking the time to reply to me.

It sounds like you’ve had a pretty long ride of this! Are you still working?

My CSR was described as mild, but I’m finding it is really affecting my working life which has a huge impact on my life out of work, so I admire those who are living and working with conditions far worse than me. My work rate is far slower and my concentration, headaches and tiredness are terrible. I’m not a good sleeper anyway, which I have read may be a contributing factor? Other than that I don’t seem to fit the standard sufferer, other than stress I guess.

Thanks for responding

K

[Jogie in reply to CSRScotland]

Hi

I'm still working but not in the same job. I couldn't continue to be effective in my previous job so I had to have a radical rethink. I downsized my life significantly in order that I could downsize my job. I am now self employed and work from home tutoring maths online. I don't have the same disposable income as I used to, but I do have more freedom, control and time so I'm happy with my decision.

[CSRScotland in reply to Jogie]

Thank you Jogie

This is lovely to hear. Glad you have found a lifestyle that works for you.

In regards to your comments on nutrition, I purchased a nutribullet as soon as I was diagnosed to allow me to include much more leafy veg into my diet. I don’t drink alcohol so can’t cut that, but I could do a lot more in cutting sugary snacks...I’ll try!

Exercise is not happening right now as I’m anaemic also and trying to get my iron levels back up. Working and housework is exhausting enough right now!

Thanks

K

[alalex101]

I think you should notify your eye provider and see if the worsened distortion warrants a sooner appointment. I think you should see a retina specialist. CSR can sometimes be confused with CNV which can be treated with inspections successfully.

[CSRScotland in reply to alalex101]

Thanks for your response.

I hadn’t even heard of CNV so had to google it! There are so many conditions it does seem like a minefield to get a correct diagnosis. The first day at the optician I came away being told it was dry AMD. If there’s debate on my next pictures I’ll push to be seen at the hospital.

Thank you for taking the time to reply to me.

K

[SueMulk]

I was diagnosed with CSR in my left eye in August so I'm on a similar timeframe to you. I was referred to the hospital as the optician thought I had wet AMD as I already had dry AMD. I am going in monthly for check ups but no treatment so far.

Like you I find that my vision is changing as the fluid moves. Initially I had severe distortion which made me feel sick but my brain learnt to cope with it. It was mostly vertical on the left hand side. It became harder to read when it became more central and then became horizontal waves rather than vertical but again my brain adapted after a few days. I also have a dark after image, flickering light patch in bright sunshine, colours are dimmed like looking through a brown filter and the image is smaller in my bad eye. One problem is that my glasses prescription is no longer correct for my left eye (shorter focal length) but as I am short sighted, I can see better close up if I take my glasses off. I am wearing my reading glasses indoors rather than my varifocals most of the time.

As well as improving diet, one thing I noticed online was that I should avoid steroids. I asked the doctor about it and he said I should minimise use of steroid creams. I found I was using 3 different steroid / hydrocortisone creams as I am prone to allergic skin conditions. I have now cut these out completely.

I think I am seeing some improvement but it may just be my brain is coping better. I am due to go back for a check up next week.

So far there has been no sign of scarring.

In terms of using spreadsheets, you can turn off the gridlines completely.

[CSRScotland in reply to SueMulk]

Hi Sue, wow yours does sound much worse than mine. I feel bad for complaining!

Yes it’s all documents and emails that are uncomfortable as well as the spreadsheets, it just makes working uncomfortable and I’m having lots of sore heads. I tried the grid lines off but then find it hard to know where I am, plus just the straight lines of text or data are as upsetting.

I don’t use any kind of steroids or steroid creams so I can’t blame those. I’m sticking to my daily intake of green leafy veg with the help of my nutribullet but have not looked at vitamins yet.

So is your dry AMD in the same eye? Do you have one good eye?

The more I read and speak to people I feel that this episode is going to be the start of more similar episodes or additionally that I will develop MD. my initial diagnosis was dry AMD but as no bleed was apparent and I’m 45, they then said CSR.

I haven’t been seen at hospital, they just looked at the photos my optician sent over to diagnose, and it’s the optician I have to go back to after three months.

Thanks

K x

[SueMulk]

I was diagnosed with dry AMD in both eyes a few years ago but it hasn't progressed very much. I have been taking Macushield daily plus eating my greens and protecting my eyes from sunlight - my varifocals and reading glasses are reactolite so darken immediately in bright sunlight. I was being reviewed every 3 months by the optician because of the AMD which is how they picked up the fluid which meant I was then referred to the hospital.

I am older than you at 63, so retired which means I can adjust what I am doing depending on how my eyes are doing. I am still reading and driving. I do think I can see an improvement in the CSR but waiting to see what the hospital says when I go back next week. The hospital previously said my vision was too good for them to intervene! I'm not getting headaches but I am getting tired due to processing the confusing signals from my eyes.

Fingers crossed it clears up for both of us and doesn't recur. I did read it could take up to 6 months to clear up.

[CSRScotland in reply to SueMulk]

Awh Sue I’m jealous of your retirement!

Although I must admit I’m getting to work from home due to COVID so that eases the load somewhat. I can have the lighting exactly how I want it and take breaks within reason. Also means I don’t have to always be cheery when I’m feeling rubbish!

I’ve been light sensitive and suffered migraine for many years, often triggered by bright lights, so folks in the office used to moan that I had my blinds shut. I’m also never seen outdoors without large dark sunglasses! I’ve been like this for years and winder now I’ve its connected in some way?

I think it’s hard to explain to others how exhausting the CSR is, and every time I discuss it with my line manager I just get the feeling he thinks I’m being a drama queen!

Never mind, it’s Friday now, so I’ll down tools and try and relax over the weekend!

Take care

K

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