Having to unravel everything myself seen as my neuro is not much help. So I had what I think is TN for 3weeks (stabbing eye pain, borring eye pain, cheek dullache, forhead pain and jaw spasm). In the middle of this period and since then I’ve noticed I’m quiet light sensitive too. The last two occassions it’s been bright I’ve literally hidden in the car with my hands covering my eyes and the visor down and still felt terrible.
Is this part and parcel of TN (I think I have the ophthalmic branch version) or is occipital neuralgia? I’ve had neck problems since before my neuro symps started last July and had physio/ chiro treatment though spinal MRI was normal. I have occassional pain/stiffness on the left side of my neck at the top but touching this doesn’t seem to set off any obvious light sensitivity or pain in my eye or light sensitivity. And to be honest the pain and stiffness is 80-90% better than what it was like last July.
Anyone else had experiences with TN or occipital neuralgia and photophobia?
Reemz
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What does TN stand for? Thought you might mean ON? I am undiagnosed but know what you mean in relation to the photophobia. Had it recently for two weeks and I was really surprised at how extremely unsettling and unwell it made me feel, almost nauseous when there was low sun shining directly ahead e.g. through the windscreen. Felt like a vampire cowering from daylight. I recently read that a test for ON is that the pupil dilates rather than contracts with exposure to bright light, so I’m guessing that this may explain the connection between photophobia and ON. Anyone know this to be correct?
Hi Mrbobowen
TN is trigeminal neuralgia - I’ve come to this conclusion because of the facial pain stabbing/icepick type sensations I’ve had in my eye but there is isn’t much on TN and the eye itself as most people get the cheek or jaw affected more.
I did think optic neuritis but my vision, colour, visual fields and pupils are ok. (Yes I believe you do have a pupil problem when you get optic neuritis as you said.)
I can definietly relate to it making you feel nauseous and particularly the low setting sun as you say. It’s very unsettling!
Glad you’re feeling better. Hope mine goes away. I’m even feeling sensitive to glare off my phone and computer screen in that eye though it’s not unmanageable.
Reemz
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I can concure the sunlight seems to burn into my eyes and brain,I have to wear shades and even then I am struggling,I get blurred vision to.Headaches to,I mean realy bad headaches.
I have had photophobia during ON …most unpleasant…it started after a course of steroid eye drops for dry eye in mid feb although the ON started mid Jan. ON can cause photophobia but mine continued even after the abnormal pupil affect had returned to normal the eye neuros were a bit baffled but my glaucoma drops were not helping now on preservative free and the light sensitivity has settled re day light etc…not sure about the light re having an eye exam but I was really struggling with this and tears streaming down my face on exam…but back on fri fora check up…so will know then …lots of things can cause light sensitivity uveitis also, virus etc have you had yours checked out? sometimes it can settle on its own it I can empathise as mine lasted several weeks and even though dry eyes settled the light sensitivity didn’t. I was sitting in the dark allot of an eve with just the tv on and even the glare from that made my eyes water… em
Had my eyes checked at the opticians and unoficially at the hospital I work in and zilch eye related and certainly no obvious signs of ON. The opticians said if I keep getting problems they’ll refer me officially so the problems can be investigated thoroughly by the ophthalmologist and also then the neuro and GP are also kept aware. I’m meant to be on a contact lens trial too but so far everytime I put them in I trigger off the eye and head/face pain. I’m due to see them again in about 2 weeks so I think if I’m still getting photophobia and the eye pain I’ll probably go with the opticians suggestion.
I can sympathise with headaches Jellybean. After I had my episodes of ice pick type eye pain I was left with a ache on my face and head too and it was like someone was borring my eye out. I felt terrible, just felt like curling up and closing my eyes.
Reemz
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