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Waiting....

Hi there,

I’ve been lurking for a while, but only now decided to post.

I’ve basically been unwell now for 6 weeks. It started with the most horrific headaches with blurred vision. At first I just thought it was a bad run of migraines, until a) I realised the migraine tablets weren’t working b) migraines every day were totally unusual for me.

I felt non specifically unwell, very tired, thought processes very slow, and craved sleep whenever I possibly could.

Thinking back, the headaches were in the afternoons, until one day I woke up with horribly blurred vision, panicked and went for medical help. On call eye doc said my disc was swollen and said it was optic neuritis. A few days later though, a full eye clinic work up was basically normal except for reduced acuity and some loss of colour vision.

I gave in and took time off work, and gradually worked out that the headaches were related to how much focussing I’d done, and how much I’d moved my eyes. If I had a morning of not attempting to read or look at a screen, I was fine, but as soon as I did either of the other things, bang, terrible one sided pain behind the eye and on that side of my head.

Over the last few weeks I’ve felt terrible, utterly exhausted, sleeping a lot, which seems ridiculous with just an eye problem.

I’ve had an MRI, and am basically playing a waiting game.

I’ve had a few weird symptoms over the years, but have managed to convince myself that they are in my head, as they generally settle over a few days or weeks…numb face, numb feet, tingling in hands, heaviness in legs, slurring speech and very unsteady when tired. Only one major thing which needed medical help; vestibular neuritis with nystagmus and ataxia, but that was 20 years ago. I’m now in my mid 40s.

I’m having moments of thinking even the optic neuritis was not real as the photos of the disc a few days later looked normal. Maybe this is all just stress?

Hi C,

It seems we posted at the same time and are in the same boat!! I guess its just a waiting game, but its so frustrating. I am not much younger than you at 40 and feel so lazy and guilty having to “have a sleep” in the afternoon!! I feel like a shell of the person I was a year ago!! You’re not on own your own either!!

Carrie x