Nystagmus eye pain

Hi Everyone

For the last couple of weeks I have been experiencing pain around my eye which has Nystagmus the pain is above eye and I have funny sensation at times down the side of check and sometimes aching in jaw.

i saw a Dr yesterday and he said he would refer me to eye specialist and he thought a good idea if I also saw dentist. I have booked a dentist appointment and had a phone call from the specialists today to say my referral has been categorised and I would be seen within 4 weeks by eye specialist I see annually or I could see a locum who has an appointment first thing Monday morning.

I am worried sick about it and that this will not go away and this is me now. Everything I have read about Nystagmus has been very negative.

Sorry to moan



I’ve had nystagmus and it is truly horrible so I sympathise. The good news is mine cleared up completely and to date at least, has not made a return. My vision distortion was severe enough to land me in hospital for several days. It took a good few weeks to sort it self out but it did. On a further positive note my vision has improved year on year since that attack so recovery can continue long after a relapse. I saw a very good optician at the time who gave me some prism glasses which helped considerably.

I recall reading botox can be an option should it not clear up.

Thank you for your message. I haven’t been offered any therapy to help, although the locum on Monday might offer something. I’m scared I will be like this forever now. Work have been amazing and already placed in changes advised by Occupational Health. The pain around that eye is really getting to me. There have been tears worrying about ‘what ifs’ which isn’t helpful I know.