UK Keratoconus Self-Help and Support Association

Hi everybody ,this my first time on the forum .I personally have Keratocunus in my left eye .I have just started wearing the hybrid lens and after about 3 different lenses I seem to have found the correct one .I went along this route as 6 months ago I started having severe migraines .Does anyone else suffer from migraines and believe it may be linked to the Keratocunus ?If so what do you use as a preventitve?

Hi Paul and welcome,
My migraines started before I had KC, so I don't think they're related. And strangely enough when my vision was at its worst, the migraines (which had always been preceded by visual disturbances) stopped for several years. It was as if my brain was already handling so many visual disturbances with the KC that it decided not to impose more!
There are others here who have migraines so may have suggestions for you, though people have lots of different triggers for migraine. One of mine is getting overtired and that's difficult to avoid when your brain is trying to cope with the visual distortions of KC. I hope having lenses that work well for you may reduce the migraines.
Good luck
Anne

for about a year prior to the KC being dx I had severe migranes, they vanished for about 18 months then returned, I now get fairly frequent retinal migranes which cause total black out the shortest Iv had one for is 3minutes and longest just over a hour, I get zero warning they just appear out of nowhere.

I get migranes aside from the retinal ones, and hate them.

I take zomig for them but it rarely shifts them for long, I just isolate myself to a dark room n attempt to sleep .

here if you wantto chat x

Hi everybody, my name is Andy
I have had KC in my left eye since I was 17, I had 2 grafts and a contact lens implanted. The vision with a soft lens is good, but about 2 months ago I've started with migranes again, really sensor tive to light this time as before it was moving blurred bits in my vision. I've just learnt I have it in my right eye now and it's accelerating. I am now being referred back to hospital for a operation on my right. I was just wondering if anybody else on here had it in both eyes and needed a operation for a graft. It was over ten years ago since my left was done and I can still remember how painful it was. Not looking forward to it at all. also has anybody had 2 different kinds of migranes for same. Cheers

Hi Andy and welcome to the forum,
Yes, I've had grafts in both eyes and I know I'm not the only one. Though I didn't really have pain after the operations, just a bit of discomfort for a few weeks, so pain isn't inevitable. And if your KC in the right eye has started recently, is it too late for crosslinking (CXL) to stop it progressing further and avoid the need for a graft?