37 and CSR for 2 years in my right eye. - Macular Society

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37 and CSR for 2 years in my right eye.

Someone37 profile image
7 Replies

Hi all,

Im a male 37y and i have CSR for more than two years in my right eye. I'm from the Netherlands sorry for anny spelling mistakes.

I am waiting for a fysiodyne treatment for two years now. Already have tried diarethicum pills and that didn't work.

The moisture behind my retina this year did start to get a bit better last few months.

There are several things i changed in my life between OCT scans.

So i really don't know what could cause some of the liquid behind my retina to go away.

Maybe just time or maybe because i started using some mind expanding "medicine" to work on my general stress and i do have a perfectionist type personality that could be considered Type A.

I have started some EMDR sessions to work on old trauma it makes me stress allot at this time but i hope that would in the end payout when i am trough with it.

I started microdosing Magic mushrooms for half a year now.

Sometimes combine it with a 100MG Niacin that does get the Flush effect.

Most days at 10:00 am i take CBD oil 25mg.

And some times in the evening some full spectrum Indica Oil few druplets to shutdown self talk and relax. And it helps me to sleep well. Yes it contains THC.

I did start with headspace to learn to meditate.

Also in the morning i regularly take cold shower's.

At the moment i read some post about ppl that say that CBD oil helped them.

And also Niacin or a derivative of vitamin B3 did help someone here in the forum.

And i read negatieve things about full spectrum Oil that contains THC.

I still have the serosa in my right Eye. And some permeant damage is happening because the fysiodyne treatment is not available at the moment.

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7 Replies
Blink182_joel profile image
Blink182_joel

I’m 36 and have had CSR since 2020. I too was awaiting Visudyne PDT, but as you probably know, production has stopped, so it’s a waiting game. My consultant was persistent on offering injections. I definitely didn’t want these. There is little evidence that injections help CSR. So I took matters into my own hands really. I read a lot of positive stuff about Micropulse. The results are more visible after a few months, after treatment. Treatment takes about 2 minutes and is painless. No scarring is visible from the treatment. However, you will likely always have some sort of scar, as ripping your macular away from choroid will leave some form of altered state of tissue. Same with skin; it’s never the same after a cut. Anyway, this worked for me, after about 4-5 months, I had no evidence of a leak. It did start to come back after 8 months, but never reached the centre. It is recommended to have a followup appointment after 6 months, where you may need second Micropulse treatment. So this is what I had after 8 months. Dr. Said he thinks this second treatment will likely be the last for a long time, if not permanently. We will see, none of the CBD, Spironolactone, Asprin stuff worked for me at all. Just made me stress more about trying to get rid of it.

CSCRkid profile image
CSCRkid in reply toBlink182_joel

Hi, I am in the UK and suffer from Chronic CSR.  This is a post I made a couple of years back and hopefully will give you some encouragement.

Having any vision problems is a worrying period in a persons life, and it very difficult to see a way ahead (forgive the pun!).  I had CSR at an early age which left me with no central vision in one eye.  19 years ago I developed it in my other eye and I had successful PDT which gave me 10 years of good vision.  A reoccurrence meant another PDT session but this only lasted 18 months.  So I paid for private PDT in April 2020, which did not work at all and sub retinal fluid was at a high level. 

Apparently efficacy of PDT can reduce with the number of treatments.  So, result was diminishing sight, loss of contrast sensitivity, problems in dim light.  Worrying and frustrating, and fearful of what might be the final end result.  At the age of 70, time was not on my side. 

My NHS Consultant was exasperated with the lack of progress as well but said ‘Lets try other things’.    So I went back on Eplerenone (which had done nothing for me previously). He was also concerned that I had ‘closed angles’ (too narrow gap between iris and cornea) so a risk of glaucoma from high eye pressures.  So, I had two iridotomies to relieve pressure build up. 

This paved the way for me to have Eylea injections in the eye.   I was still in that fearful no mans land of not knowing what was going to happen and struggling with day to day problems of poor vision so I wasn’t feeling overly optimistic of a breakthrough, after all, PDT is the king of treatments and that hadn’t worked. 

I had my first Eylea injection Jan 2021, no problems with it, not painful.  2 weeks later I found my vision was not good even using the stronger lenses my optician friend had prescribed to help me out.  This was not a good omen for me. 

So, I went for an OCT scan with my optician mate, and we were both staggered to see that the retina which had been like Mt Vesuvius with all the fluid under, had now gone completely flat!   No wonder my strong lenses were useless, I had now resorted to a prescription from 2 years ago.  

My contrast sensitivity and low light difficulties resolved over time and now normal, now that  the photo receptors are in proximity with the macula again    

Now, was it delayed PDT efficacy, or Eplerenone, or Eylea injection?   

Who knows, but I will take the result over the reason any day.  I personally don’t believe in coincidences, so will simply say that Eylea has served me well. I had my 3 injections in total over 3 months. I had my last check up 2 weeks ago and my right eye is showing 6/6 vision. This rather long post is sent with personal relief and to express a belief that hope is not to be abandoned, even when things seem to be on a downward trend.  Have hope and keep fighting and I sincerely wish that some of you will also experience a positive change in your circumstances.

We are all different and the reasons we get CSR are largely unknown, and not all remedies work for all people. Now 73 and live in hope that my recovery lasts as long as I do!

tallyho profile image
tallyho

how do you know it’s the lack of fysiodyne that’s causing the damage and not all the other drugs your taking including the magic mushrooms. IMVHOI def would not be doing all that !!!

pubmed.ncbi.nlm.nih.gov/250...

I rest my case with the above.

Someone37 profile image
Someone37 in reply totallyho

The normal treatment for central serosa is a treatment with fysiodyne combined with photo dynamic therapy. Whereby they activate the Visudyne and block the leak behind the retina.Visudyne is hardly produced at the moment (because of production problems) so there is long waiting list for everyone with similar eye problems.

Permanent damage to the eye is starting because the retina is not in contact with with the foto sensitive tissue beneath the retina.

Normally if the problem does not go away by it self within 6months you should get a treatment by month 9 to prevent permanent damage. But the chemical Visudyne is not available so that's the problem for all of us with this disease in the eye.

I started meditation courses and now meditating every morning as a routine. I started taking cold shower's taking Niacin and B1 and B2 supplements and Luteine.

These should have a effect on lowering cortisol levels.

The dokters all say to try to avoid stress.

I'm not promoting the use of drugs at all.

It is up to anyone them self what they are oke with to use, it is infact my own body.

I sometimes use full spectrum Indica cannabis oil if I'm stressed and have brooding taught in can't stop even with meditation.

And i use a micro dose 100mg of magic mushrooms Paul statements stack. And i personally notice that i am more present in the moment. And get less stress during the work day more of a flow state of mind.

Anyway the eye doctors can't help at the moment only monitor the progression of the disease that's it.

For some pulse laser therapy is possible, but my serosa is close to the optic nerve so i can't be helped with that type of treatment.

Like most i am also scared that i could lose more and more of my vision and maybe will lose my job because of it.

ChesterfieldChap profile image
ChesterfieldChap

Everyone's situation is different, I've had csr for about 4years now even though I don't suffer from or feel stressed as I have a good life my problem is very poor sleep quality but one thing I've noticed among everyone with this condition is the over thinking and worry of what may happen down the line and the search for the magic bullet to kill this thing but I think in doing so people stress themselves out and become permenantly anxious all the time which is counter productive.Where I live in England they offer no treatments at all so I can only count on myself so I've found the best thing that has worked for me is just to let go and not fret about what I can't control and work on what I can control which is a healthy diet, daily exercise, getting fresh air and sunlight which has helped tremendously. I hope t works out for you in the end either way have a go at just letting it all go.

JGer123 profile image
JGer123

Hi - Sorry to hear you're struggling with this, it can be difficult to deal with. I am 37 and I have had CSR for about 12 years in my right eye, and within the past few years it has also started effecting my left eye.

I had PDT, which was successful for a while, but I relapsed from it about 5 years ago. Since the PDT, I have had injections (Eyelea, and the generic option), which didn't help much. I quit smoking THC, and tried to change my lifestyle to have a positive effect on my condition, but there haven't been any great positive outcomes. I also tried microdosing magic mushrooms, which also didn't seem to help, so I stopped with that.

More recently I have had the micropulse laser, which has helped, but I have had to have it administered multiple times, most recently about two months ago. The recovery time is about 2 months before I start seeing positive effects. I will need to continue monitoring the condition because I don't think there is a "magic bullet". If you're able to find a treatment that has a positive effect for you please let us know.

bizzactiondrive profile image
bizzactiondrive

Hi. Suffer also, dont want to go too much in the detail. But ive got two important advise for you. 1. Stop cold showers, look into science, it dramatically increases norephinephrine and adrenaline which are a trigger for RCS, it think it was the culprit of my second RCS attack. 2. Look to get your hands on propranolol and pay special attention on optimising blood pressure. Googel propranol and CSCR you will see. Dosage maximum 2x 20mg . All the best

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