Optic neuritis plus one-sided headache

Hi all, I have experienced an episode of optic neuritis almost a year ago. My vision on the affected eye never fully recovered and is since VERY unstable. Some days it’s almost clear, other days it is foggy, grey, blurry, colour vision is down. It can be so severe that I cannot see traffic lights even when standing right in front of them. It seems to go down with heat and stress. More recently my vision on the affected eye has been rather bad pretty much continuously and is now accompanied by one-sided headaches in the temple area near the affected eye. Has anyone else observed unstable vision and very localised headaches? If so, could you share your insights (e.g., potential diagnosis and / or anything that might help relief some of the pain - over the counter pain killers do not seem to help - etc.) please? A MRI has been done, but the results are outstanding. Thanks for your help.

Edit: Perhaps unrelated but figured I add. Before the optic neuritis i had a fair bit of irritation (“hair hurting”) frequently and this has returned frequently throughout the year post-optic neuritis. Any thoughts as to whether this might be related or if anyone has experienced this too? This would be very welcome. Many thanks again.

Hi Kat. Welcome to the forum.
Sorry you are going through this optic neuritis.
I do not have these problems apart from finding it a bit harder driving at night.

I do hope you get all the help available for your condition.
Kind regards

I would consider you talk to your MS team or your GP. I had ON and did not have headaches.

I would suggest you need to really TALK to a doctor. Do not treat things too lightly because you have MS, anything wrong with your vision which is not normal for you and headaches should be investigated IMHO.

I have ON on and off and yes heat and stress will trigger it. So will high blood pressure so please talk to 111 or talk to your GP. Again in my HUMBLE OPINION.

Thank you, Crystal! Much appreciated.

@Crazy_Chick: Thank you! I totally agree with you. One additional layer of complication is that I have been passed through too many hands and it appears that no one feels responsible. It is really difficult to get information and to know which doctor to speak to. GP refers to the experts as GP “doesn’t know”, but there is no chance to ever get through to the experts… It’s rather frustrating to say the least.

optic neuritis is usually dealt with by neurology as you have MS. as far as i am awaer anyway. You might need steriods.

I’ve experienced both these things although not really at the same time. About 18 months ago I got that very sharp throbbing in the temple area and was at first told it could be trigeminal neuralgia and given Naproxen which is quite a strong anti-inflammatory. Helped for a while but then the throbbing pain spread to my ribs and was really unbearable. I called the MS nurse and was given Gabapentin which I now take three times a day. I can feel the symptoms returning throughout the day if I forget a dose so they are still there.

A few months ago I had an attack of optic neuritis and they gave me a very high steroid dose which helped and it gradually got better.

Until the optic neuritis all my MS symptoms including the temple throbbing etc was on my right side but the ON was on the other side and they explained that the brain controls sight on the opposite side to everything else. But you seem to have had them on the same side - might just be where the legions happen to be.

Try to talk to someone who specialises in neuro things not just your GP. And don’t let them put everything down to MS if your are unsure that that’s what is causing the temple pain, although it sounds very like mine.