KC and Headaches is there a link?

[Carole Rutherford]

It has been quite some time since I lasted posted here. My 23 year old son who has autism and keratoconus has now given up on the eye hospital for the second time since he was diagnosed with KC. I just wish that we could see the same person twice who also had a basic understanding of his autism and how that affects his KC. The eye hospital were in the process of 'trying' to fit my son with Scleral lenses when he gave up on them for a second time. If three different optometrists all failed to be able to fit these lenses then I am not really sure how they expected my son to be able to fit them himself. Part of the problem with his autism is that he finds it very difficult to revisit something when he has had a negative experience.

I have returned to the forum to ask if there could be any link between the prolonged and continues headaches that my son has been having for over a year now and his KC. I have asked about this and no one can really give me an answer to the question. My son is also having problems with his balance, complains of feeling very dizzy, having stabbing pains in his eyes as well as his head and his vision is even more blurred during one of his headaches than it is at any other time.

We have seen an ENT consultant who did a CAT scan on my son and we are now being transferred to Neurology but I thought that it would be a good idea to ask the people who truly understand the condition if headaches are something that can accompany KC before we go to see the Neurologist.

Many thanks for taking the time to read my post

[Anne Klepacz]

Hello Carole,
It's nice to see you here again, though I'm sorry it's a negative reason that has brought you back. I certainly used to get a lot of headaches when my vision was at its worst before my grafts. And they were sometimes accompanied by feeling dizzy and slightly nauseous. I assumed at the time that this was a result of my brain having to make sense of all the multiple images I was experiencing then, which I found quite exhausting. So I think there's quite likely to be a connection, though it's good that your son has a referral to neurology so that other causes can be ruled out. Do let us know how you get on.
All the best
Anne

[Carole Rutherford]

Hi Anne,

Thank you for responding to my post. David is also complaining of feeling slightly nauseous when he is feeling dizzy. I am pleased that David is being referred to a neurologist but I also think that I am going to have to persuade David to return to the eye hospital to see the Consultant again so that we can talk about his headaches to someone who knows more about his KC than we do.

Carole

[Sweet]

Hi Carole,

Really sorry that your son is having bad headaches accompanied with nausea and feeling dizzy. Really bad headaches can cause the last two symptoms and this is without any vision problems.

I get really bad headaches if I don't wear lenses for a while, I think that my brain has difficulty trying to understand what it is seeing. I think we struggle to view things, which takes a lot more concentration and strains our eyes which can cause headaches.

A neurology opinion sounds like a good idea, just so that you can make sure that it is a vision problem. I have MS as well as KC, but only really get bad headaches if my vision is bad. The only time a headache was related to a neurological problem, was when I had double vision due to a MS relapse. Please don't worry though I think you do need to see a consultant to check everything out.

Wishing you the best, love Claire X x X