Large blindspot- macular damage caused by retinal migraine or AMN- sunlight/hormonal trigger

[Cmat]

Apologies for this very long post. I’m feeling lost after getting a sudden blindspot impacting my vision, and paranoid it’s going to happen worse or in other eye, as it’s not been properly diagnosed but seems to be a vascular thing. Looking for any advice or insight anyone can share.

My Background

- Age 40

- shortsighted (-11,-10)

- 2011/12 started with occasional vision loss (blankness crowding in, similar resolution to when a flashbulb goes off close to eyes), lasts 1-2 minutes

- Had tests, no diagnosis from hospital but optician mentioned m retinal migraines, especially as I started getting a headache after these episodes. They are triggered by exercise/a cold/stress/strong daylight- feels as if my eyes get overwhelmed by light. Only get occasionally now.

- Haven’t drank coffee in 2 years as whenever I do my eyes go bright red and burn

- Have had nighttime dry eye for 3-4 years, very bad, no real relief from drops, nothing wrong with eyelids or tears etc. I wonder if this too may be vascular. The red veins in my eyes are creeping across to my irises more and more

- Graves’ disease, caused overactive thyroid age 30, now it’s underactive and no sign of active thyroid eye disease.

I’m currently 14 weeks pregnant with my first baby after IVF and on progesterone medication. 2 weeks ago I was talking to someone and there was strong daylight behind them. When I looked away I thought I had an afterimage from the sunlight but it has stayed and is now a wedge shaped blindspot right in the centre of the vision of my right eye. Makes it hard to work on screens, read lettering etc- have been taping right eye shut so I can focus more easily.

After tests, which showed nothing and having to argue the case that it’s different to a floater the eye hospital think it is either linked to a retinal migraine (even though I didn’t have the usual symptom) or AMN- acute macular neuroretinopathy. Apparently this can take a while for the damage to show on a scan, so 2 weeks may be too early. When I read about AMN the scotoma I have fits the description exactly, down to the shape and suddenness and the fact it affects women my age. The only other risk factor I have in common with the test cases is that they were on the ‘contraceptive pill’ and I’m on progesterone which is similar. However I’m not going back to the eye hospital for 2 months, they don’t talk to the maternity clinic, and I’m still on the progesterone so I’m paranoid it is going to happen again.

Has anyone else had:

- Acute Macular Neuroretinopathy?

- Permanent macular damage occurring in pregnancy or caused by retinal migraines?

- Permanent Blind spots triggered by sunlight?

I’m thinking of getting transition glasses to help me avoid sunlight. The eye doctor also said to avoid cold as this can cause the artery to the eye to spasm but can I really avoid going out in the cold for the rest of my life?!

I’m also thinking of trying to find a specialist but AMN sounds rare, no one jumps out from a google search.

Any thoughts or advice very gratefully received.

[rosyG]

I would ring the helpline as they may well know specialists who can help

[Cmat in reply to rosyG]

Thanks Rosy, will do

[Hidden]

Hi cmat, sorry to hear of your problem, sending you a hug x

I don't know if this is anything like what you may have but my hubby had a retinal artery occlusion many years ago which they said was due to a migraine in his sleep. It has not changed in severity nor affected his other eye. His consultant assured him the odds were astronomical.

Good advice on here to contact the helpline.

If I were you I would also insist your gynae Dr speaks with the eye Dr - if necessary and u are in UK make a complaint through PALS ( your hospital will have details on their website). Not to cause any trouble but to ensure no time is wasted or information missed given your condition - esp as you have had to use ivf.

Try to relax though if you can, easier said than done I know! Best wishes going forward x

[Cmat in reply to Hidden]

Thanks very much for your good advice. I’m sorry to hear what your husband has gone through. I’m always blaming myself eg for looking at the light, for doing x,y,z but if awful things like this can happen just when you’re sleeping it makes you realise so much is just bad luck!

Thanks again x

[marianS]

Dear Cmat,

I am sorry to hear you are having problems with your eyesight, especially at this exciting time in your life.

These two conditions you mention; retinal migraines and acute macular neuroretinopathy are not conditions with which we are familiar, especially with the other conditions you have which may also be affecting your sight. It is crucial that you get the best professional ophthalmic advice to support your ante-natal care, and we may be able to give you some guidance on regional centres of excellence to assist you search for a clinician who specialises in such a rare retinal condition. It would therefore be useful to know where you live and what hospital you are currently attending as a start.

It would be easier if we talked with you over the phone or by email, so I invite you to call our Helpline on 0300 3030 111 between 9 – 4.45 or email us at [e-mail].

On a practical matter, we would advise not having transition glasses but wearing wrap around, anti-glare over-glasses in either yellow or orange – these would also, to some extent, protect your eyes from the cold, more information in our leaflet on “Protecting your eyes” from our website:

macularsociety.org/sites/de...

The glasses can be bought very inexpensively from any low vision supplier and again, we can give you these contacts by post or email. A hat such as a baseball cap can also be a tremendous help with glare.

We wish you well with your ongoing pregnancy and your future health.

Regards,

The Macular Society

[Cmat in reply to marianS]

Thank you very much, I really appreciate the support and will give you a call tomorrow.