UK Keratoconus Self-Help and Support Association

Been a long time since I was last here - mostly because of my own health issues - but my 21 year old son David who is also autistic, for those who remember me, is now telling me that his right eye feels as if it is at the point of exploding and the feeling is now waking him up from his sleep (something we have precious little of in this house)

Basically David stopped going to the Eye Hospital about 2 years ago now because they were having problems with his lenses and probably even worse for David we saw a different optometrist every time we attended. This meant that we had to start from scratch at every visit because although it was written into his file that David is also autistic no one ever read the file so two minutes into an appointment I had to start and explain to the optometrist that David is autistic. The last visit was the straw which broke the camels back for David because after explaining that David was autistic the optometrist decided to speak to David as if he was deaf and was literally shouting at him. David refused to go back and went back to spec savers where the person he saw there also has KC.

However David has been complaining for sometime about his eyeball bulging and the feeling that it could explode from its socket. He has also been having many problems with multiple allergies and I wonder if this has anything to do with the feeling?

I did ring the eye hospital and explained what had happened and why David stopped attending; they should already know but again appeared not to. It was suggested that David attend their A&E department which I think is a good idea but I have yet to convince David. If something goes wrong for a person with autism they take a great deal of convincing to try again and when that person is 21 they can not be forced against their will.

David has asked me to ask here if his current symptom is common and if there is anything that he can do about this without going back to the Eye Hospital. If going back to the hospital is what is needed then please be honest with us it might just help.

thanks

Dear Carole

Thank you for your post. It is important to go back to the hospital; not to see the optometrist, but to see an ophthalmologist. Tell David that he is not going to the same department, but this time he will see a specialist eye doctor who will examine his eye to see if he can find out the cause of this odd feeling he has.

The Ophthalmology A&E department is a good place to go; he can be sure of seeing a doctor at that visit, although you may have to wait. If you arrange to arrive about quarter of an hour before the A and E clinic starts, then you may not have to wait too long.

Please let us know how David gets on, and tell him that the rest of us who share at least part of his burden (the KC part) are all on his side. We hope all goes well for him.

I hope that your own medical issues are beginning to be resolved; in all this, do not forget to look after yourself!

Yours aye

Andrew

Hi.
By exploding eyeball... does he mean that the front of the eye feels very swollen, maybe from getting red and sore from an allergy or lens intolerance or something?
Or could it be, a feeling like the whole eyeball is being blown up like a balloon?
I've been getting the latter impression recently - I don't know whether it is a real sensation from having too-high eye pressure, or just paranoia because I know I've had pressure problems recently.
Either way....
I think it is important to get it checked out - a problem with inflammation from an allergy reaction could be fairly readily sorted out, and if it is something serious it needs attention.
I do sympathise with not wanting to go back to a hospital after bad experiences liek that though!
My experience of A&E recently is - apart from "take a good book or several" - that the first thing you do is join a queue for the "check-in nurse" who will ask you details of what the problem is, when the symptoms started etc. And will probably start by asking "Have you been here before?"

As you aren't booked in for an appointment, the first set of info any of the staff get, therefore, is what you say to this person in the first minute. SO do plan out in advance how you are going to get "David is autistic and he needs X, Y, Z treatment from you" into the first paragraph of the "check-in" notes.
Good luck.
Rosemary

I can sympathies with this, I get eye strain, headaches, basically its pain. I put it down to the "drip drip drip" of bad vision which has built up over the years, I put it down to this because my vision has not got worse, but the pain has.

I suspect vision once corrected well will get rid of the pain - (I'm still searching, by the way, for this)

Pepe

Hi Carole,

Andrew is correct - you have to go to A&E because simply put, no-one here can be certain if the pain is due to a medical problem or "just" due to eyestrain because David isn't seeing properly. I do wish sometimes I could have access to an online slit lamp but I am afraid technology hasn't caught up with this yet!

Explain to David that to be perfectly sure his eye is OK, he has to see an eye doctor - not an optician - and that this will not be like the other times.

I wish you all the best!

Lynn

The words I was that "I sympathies with the pain" not "there is no need to see a eye Dr" why would some in their right mind say that ?

For me if my vision was corrected I think it would take away this pain, because I have had good vision when trying contacts and this pain was gone, although I could not tolerate the contacts for very long