Eye sight worsens as the day goes on ....

[susanjillian422]

Hello, thought I would join this wonderful group. Living the nightmare so many of you have described. What happened to me seemed sudden at the time, but in reality it was building up over a couple of weeks maybe even months or years.
At any rate the visual problem that is so DAMN distressing for me is that my sight worsens as the day goes on. I am similar to one of the folks here to mentioned color also being affected. I noticed a yellow halo around things sometimes. The pain in my face, ear, nose optic nerve is bad enough... but the visual thing is so draining. Most common thing I say to my husband is "not seeing at the moment sweetie.. sorry".
I made my living as a visual designer so this is crushing for me. Does anyone else have the progressively bad sight as the day goes on?  

[susanjillian422]

Thank you everyone who has responded to my comment. The question of seeing a Neuro-Opthamaligist is a good question... don't think I've seen one but will have to check. And the point of trigeminal neuralgia - that has been a question for me. Lots of exploration is happening now with medical teams.
Most of all I want to say thank you for responding and reaching out as you do. That's a huge comfort.

[sarahw244]

Hello!  I am late to this thread, but I wanted to also say that it sounds like you may have trigeminal neuralgia to me, too.  I have this, it comes and goes, but the pain is excrutiating while it is there!  When I need to, I have carbemazapine (Tegretol), which is an anti-seizure medication.  It does work wonders for this kind of pain (for me, anyways).

I do not have any problems with my vision, other than seeing the occasional flash of light with eye movement and having extreme sensitivity to light.  I would agree with binx on seeing a neuro-ophthalmologist if you haven't already.  They will be better than a regular neuro for issues with your eyes.

Take care, and like binx said, keep us updated!
Hugs,   Sarah

[illinwithoutacause]

hi again, susanjillian422,

one other question for you--have you seen a neuro-ophthalmologist?  if not, i would make an effort to find one and have him/her work with you and your neurologist, especially if they are suspecting trigeminal neuralgia.

please take good care and do keep us posted.

blessings,
binx

[susanjillian422]

Thank you so much for the warm replies. You know what a difference it makes - thank you. Yes my neuro is looking at trigeminal among other things. Guess most of us have that feeling of wonder that we can sustain so much agony, and not die from it. I noticed others in this group mentioning that they would cut off their heads if they could. It does cross our minds. Someday in the future there will be treatments for this... for now it's hard to not just give up. I have some appt's coming up with different treatments we are going to try. I'll keep you all updated. One thing I noticed about this group is that everyone seems to be very intelligent, professional people that are well rounded. Just that fact alone should make others realize that we are the real thing, people with a huge struggle on their hands.
Bless you all - you are in my prayers.

[patientnurse]

Dear susanjillian422,
What you are describing sounds so very terrifying and painful! Have they checked you for trigeminal neuralgia? That's what that sounds like to me (Im a nurse by the way). I hope you can find relief soon, as losing your vision is one of the worst things that can happen to someone.

Best Wishes,
patientnurse

[illinwithoutacause]

dear susanjillian422,

i am glad you have joined us.  it's always a bummer to see new folks who are suffering, but we all support and learn from each other so the more the merrier in that sense.

what a cruel set of symptoms you are dealing with based on your profession.  i won't get into my existential arguments about all that at this point.  it wouldn't be helpful.

i also have visual symptoms--wavy vision, flashes in my left periphery, and millions of floaters--but they remain fairly static throughout the day.  they do seem to improve and worsen periodically with my flare ups, but i haven't seen a real pattern otherwise.

i hope someone else will chime in with some information that may be helpful to you.

best wishes,
binx