Any opticians about?

[Seeingyellowstars]

I have been having increased migraines. I have always had them but it’s really bad at the minute. They always have light as one of the main triggers.
I went for an eye test today to rule out that my migraines could be linked to a prescription change. The optician dismissed this and said migraines are never really linked to vision changes.
Anyway when they were doing tests she called someone else in for a second opinion. They discussed it outside the room then she came in and told me she noticed on my right eye that my optic nerve wasn’t as defined as they like it usually. She said it was subtle. Because I’ve moved, I’m with a different branch so she said she couldn’t access my old photos to compare. She scared me by saying it could be papilledema (Since googled!!) and would like to refer me to the eye hospital but that she wanted to do extra checks. She then did a peripheral vision test and the oct test. She came back out and said both of those were normal so she was happy to watch and wait for 12 months instead of refer. She said if I get symptoms like headaches (she knows I have migraines) to go to an and e.
I feel like I was really panicked then all of a sudden she changed her mind? Can anyone shed any light on this?

Almost exactly the same thing happened to me, although both of my optic nerves were raised. I didn't have any symptoms at all, this was picked up during a routine eye test.

I tried to ignore it as advised but just couldn't handle the anxiety. In the end I went to Moorfields and explained what the optician found. They took it very seriously and ran lots of tests, including 2 CT scans, but couldn't find anything sinister. They considered doing a lumbar puncture to work out if I had idiopathic inter cranial hypotension but, as I had no symptoms, decided it wasn't worth the risks.

All of that is to say: don't worry immediately, it appears it's possible to have ill-defined optic nerves without all of the awful things that cause papilledema. But also, don't feel you have to accept the "leave it and see" approach. The anxiety was awful and, frankly, I felt that course of action was inhumane, so do push for more investigation if you feel you need to know definitely. Good luck!

I can't speak about the opticians opinion, but as a chronic migraineur it's pretty unlikely your eyesight is anything to do with your migraine. I find GPs are quick to suggest an eye test but it's rarely a cause.

If you are worried, I would call up and ask if they’ve managed to get a copy of your photos from before. If it looks different, they should refer you.

migraines rarely have a visual cause, but GPs often ask us to see patients with headaches in case their headaches aren’t caused by migraines!

@theeyeofdoe its a specsavers and she said they can only get my prescription. They can’t access the photos because they’re from a different branch. She said there was nothing she could do about that which I find weird!

@BigGreenCookieMonster thanks. Needed to hear this! Appreciate the reply.

@ButtSurgery I think they’re triggered by light and stress but probably hormonal. They’re horrible aren’t they? I’m just sick of it because I can’t function when I get one and I have a baby to look after and hate having to call on people to come and help when I can’t see and end up vomiting!

No worries, it's a bolt out of the blue. If you don't have a specialist eye hospital nearby just go to a&e and tell them you have suspected papilledema and have a headache. That should get things moving. In my case it was true - crushing headache from the moment the optician told me of his concerns. In my experience, if someone tells you to go straight to a&e if you have a headache, it's almost impossible not to have a headache! I found this was a time I had to be very clear about advocating for my own care. The fact that it was flagged by a high street optometrist and, although it was diagnosed thought the eyes but potentially had a neurological cause, meant clinicians were unwilling to "own" it and I needed to push. Good luck!

They should be able to access your photos by getting the other Specsavers to send a pdf of the images via secure email to them. Ring and speak to the practice manager and ask for this to be done. It's not unusual to have a slightly blurred optic disc margin that is normal for you -in which case it wouldn't change - whereas in papilloedema it would worsen. The photos will solve the dilemma as to which it is.
Although large chain opticians don't have direct access to all the other branches' photos they can still send the information across (even if not electronically then by printing it off and sending it in recorded post to the other branch).
You can ask for the photos and records to be given to you as well by a data access request, but the main thing is the optometrist you saw gets to compare the new photos to the existing ones on your record.

@dronesonandonandon thank you - I rang my old branch (more helpful than the new one!) and she said tomorrow morning she will get someone to send the pictures over to me.

This is why I love mumsnet - thanks all!

Great advice from @dronesonandonandon!