Trigeminal Neuralgia And Photophobia

[WellEyes]

Hello everyone,

After botched upper blepharoplasty, eyebrow lift and many doctor visits, it is almost clear that the monster behind me dry eyes is Trigeminal Neuralgia which I assumed is caused or triggered by these procedures.

I have noticed that the symptoms of this neuralgia or neuropathy can vary and fluctuate. At one point my main symptom was burning, then it was hyper sensitization to cold and wind. For some weeks the most prominent symptom is severe photophobia. I am not able to function indoor or outdoor, day or night. The only comfort is at sleep time in full dark.
I have tried Lyrica, Lacosamide and now I am on Gabapentin. I am staying on very low dose because when I increased the dose of Lyrica, it dried my eyes so badly that the doctor sent the tear lab test machine to repair, telling me "no eye can be this dry".

At this point, according to the test, I have mild dry eye on the left and normal on the right eye. But the photophobia does not allow me to have a life. Actually I even believe that neuropathy was the initiator for dry eyes and MGD. Because I have read things about neuropathy causing inflammation which could be the trigger behind al.
I am googling and googling if this trigeminal neuralgia can pass by itself in time or if I will get rid of this photophobia for good, but as you know there is limited information on this subject.

Please , I appreciate every feedback because I honestly do not know how to go on with this extreme light sensitivity. Has anyone ever heard of these ailments disappearing given enough time? Maybe the nerves are inflammated and need time to heal? (My eyebrow lift surgery was 10 months ago)

Thank you!

[Guest]

Let me tell you, I timed the tear lab machine out in my left eye twice, on two completely separate machines. The fact that the doctor assumed it was the machine and not you is just sad.

So let me ask ask you some questions...do you sleep with your eyes open? If you don’t know, do you have someone that can check for you? Rebecca has said many times that eye surgeries of any kind account for a large majority of lagopthalmos patients (sleeping eyes open and incomplete blink). Do you sleep on your side? Are your issues worse in the morning or does sleep refresh your eyes?

If if this is an eyelid closure issue, then there’s some real hope. If it’s neuralgia, there’s still hope, but as you know, treatments are limited. Are you taking autologous serum by chance? Do you present at the doctor with staining on the cornea? Do you have eyelid disease or MGD?

[WellEyes]

Hi Dowork. Thank you for your reply!
So for the eyelid closure, I got it checked , my eyes close properly during sleep. Sleep refreshes my eyes but the relief does not last long. These days my primary symptom is terrible photophobia so as soon as my eyes meet any kind of light, the discomfort starts and builds during the day, getting my eyes more and more tired until I can't wait to get to sleep at night (I go to bed at 8 pm)
It seems to be trigeminal neuralgia because the dry eye signs are not as bad as the symptoms according to the ophthalmologist. There is no staining. Though I have some dry eye issues and MGD ,but tear lab test says no dry eye on the right and mild dry eye on the left. My left eye is the uncomfortable eye and according to some reading I have done, it is even not uncommon that just neuropathy itself causes inflammation (which consequently cause MGD perhaps?). Other than that I do not have eyelid diseases. All my symptoms started post-operation. So I really started to think first neuropathy started and it somehow started to interfere with the overall health in the eye area by causing inflammation.
Today, minus the neuropathic pain and discomfort, I would have been ok with a few drops per day. Oh and I have been on autologous as well for 5 months now but they don't seem to give me relief.

Thank you again for your interest and if you have any ideas, please let me know.

Best Regards

[MGD1701]

severe photophobia
perhaps good to check cataract? but most dry eye suffers have photophobia issue.
make sure wearing big sunglasses

[farmgirl]

When my photophobia was really bad I wore sunglasses on my sunglasses. I had regular prescription sunglasses, moisture chamber type and then put a pair of fit over sunners on top of that when I was driving. I lower the sunshade even on cloudy days and wear a hat with a brim if I am outside. Photophobia can be brutal. Mercifully I am not that bad now and can get by with just regular sunglasses (albeit moisture chambers).

[Guest]

Hi Dowork. Thank you for your reply!
So for the eyelid closure, I got it checked , my eyes close properly during sleep. Sleep refreshes my eyes but the relief does not last long. These days my primary symptom is terrible photophobia so as soon as my eyes meet any kind of light, the discomfort starts and builds during the day, getting my eyes more and more tired until I can't wait to get to sleep at night (I go to bed at 8 pm)
It seems to be trigeminal neuralgia because the dry eye signs are not as bad as the symptoms according to the ophthalmologist. There is no staining. Though I have some dry eye issues and MGD ,but tear lab test says no dry eye on the right and mild dry eye on the left. My left eye is the uncomfortable eye and according to some reading I have done, it is even not uncommon that just neuropathy itself causes inflammation (which consequently cause MGD perhaps?). Other than that I do not have eyelid diseases. All my symptoms started post-operation. So I really started to think first neuropathy started and it somehow started to interfere with the overall health in the eye area by causing inflammation.
Today, minus the neuropathic pain and discomfort, I would have been ok with a few drops per day. Oh and I have been on autologous as well for 5 months now but they don't seem to give me relief.

Thank you again for your interest and if you have any ideas, please let me know.

Best Regards

Damn, this is rough. Well, I’ll say this...I met a woman at UIC today with rheumatoid arthritis and sjogrens. She said two things have helped her photophobia A LOT . That was her major symptom actually. Dr Jain put her in these UV protectant soft contact lenses that she said helped immensely. Ive never heard of that before, but she told me the lens feels like water in your fingers it’s so moist. Then, she was also wearing Wiley x moisture chamber glasses. Those two things helped her photophobia the most. Maybe you can look into that soft contact. I wish I would have caught the name from her but she forgot.

Im so happy you don’t have a lid closure issue. That makes things slightly less complicated I assume. Do you ha e access to a confocal microscope? I’m wondering if you should Perdue the neuralgia diagnosis with you me doc and get those nerves looked at. Has your doctor suggested neuralgia or have you talked to him/her about it? It’s very possible. It’s almost possible you’re just super dry if you timed the machine out.

For reference I sleep with my eyes open. My Schirmer was 2/3 tbut was 4/5 secs I had zero staining and my osmolarity was just at 300 for both eyes (considered super mild dry eye if at all)....I don’t think I have neuralgia at this point. I’m still going to peruse it and this doesn’t mean you do not have it. But I guess my point is, you can have so much pain and discomfort, you may not seem super dry (depending on the test they perform) and yet still actually have dry eye. Could be the tears improperly coat the eye if it gets worse after you wake. Could be lack of tears but not poor quality, could be neuralgia,..have you had a Schirmer and tbut done? If so what were the results. I’m curious how dry you actually are. I have tears and still feel horrible from my lid issues. It’s so complex.

[WellEyes]

Thank you all for your kind replies.

Dowork, thank you for the suggestions. I will try to find out about those lenses. I have already done confocal microscopy and neurological tests. They do not show anything wrong. But doctors have told me confocal microscopy will only show to superficial surface of the cornea, but the nerves around and behind the eye are so many and so fine that if anything else is impacted, we would not see. Basically any insult on the trigeminal nerve (5th cranial), which is one long complicated nerve all over the face including the eyes, can make me have these symptoms.

Other than that I am trying to keep both neurological and ophthalmological aspects in sight so I visit my doctor every month to check my meibomian glands and I do the osmolarity test every month. The tear lab test results are now Right eye 285 / Left eye 311. According to the doctor osmolarity will tell us not only the quantity but also the quality of the tears because it measures the concentration of these substances in the tear. Well, I mean the ophthalmologist is carefully examining my eyes each time and there is no staining. She counted the seconds that the tear actually stays on the surface etc. She is convinced that I have neuropathy. So am I honestly and unfortunately

As for your results, indeed 300 is not bad at all. Zero staining is very good news. I just hope, there will be more time and investment put into the eye issues, seeing how helpless doctors are, whether it is the eye itself or the nervous system. One of the neurologist suggested that one of the ways to handle it is injection in the trigeminal nerve in order to numb it permanently (which of course kills all the otherwise necessary sensation mechanism) that it makes me want to cry how helpless they are. It's like I tell him I have a sore leg, he suggests to cut it off. Problem solved. But this is not a real solution, of course.

I wish every eye sufferer some hope for the future and relief to have our lives back.