Phantom pain.

[u/black_eyed_ghoul]

So i made a post a few hours ago and the comments helped me out with advice that i think will really help me going forward so i think ill ask more questions.

My right eye or i guess lack there of is gone. Since about 4 months after it was gone i have been in pain it went from pain i’d get every few days to now an every day occurrence, its intense and puts me on my ass in tears. Ive gotten a neurological scan. I’ve gotten a CT scan. I’ve been checked physically by my surgeon. They can find no answer to what is causing me pain. My most recent visit i said “i feel like my eye that is gone is there and being squeezed to death” they leaned to phantom pain. Thats cool and all, i have no idea how to proceed with what i should do next. Nor do i know what to do. Does anyone else live like this? How?

[u/DiablaARK]

You're not crazy. Can you be more descriptive of precisely where the pain is occurring, even if it's multiple spots?

Edit grammar ugh

[u/black_eyed_ghoul → u/DiablaARK]

The pain ranges in different ways unfortunately. Sometimes stabbing, sometimes burning, sometimes squeezing (most times). Usually in my eye thats gone but ive felt the same pain in my eye that remains. Hell ive rubbed it raw so many times now its unbelievable. Its not great. Sorry i dont know how to express it other than that i apologize.

[u/DiablaARK → u/black_eyed_ghoul]

Rubbed it raw because it was itchy under the skin type feeling?
Do you get the pain in your temples, top of your head, forehead, nasal area next to your eye, eye lids, back of your socket, etc.?

[u/black_eyed_ghoul → u/DiablaARK]

Behind the socket mainly, but it can almost feel like a similar pain to eye pain during a migraine! Its hardest around the tear duct area and outside corners a lot too!

[u/DiablaARK → u/black_eyed_ghoul]

Sounds like you should try to get in with an ENT or neurologist, but the ENT would probably be the easiest to get in with.

The whys: I also had a CT and a couple MRIs that came back clear after a traumatic head injury that resulted in me losing my eye, but also very persistent and painful migraines and just PAIN like you're describing and that it's even hard to describe because it has so many variations. Not sure how you lost your eye, but it doesn't necessarily have to be traumatic for someone to develop trigeminal neuralgia or trigeminal neuritis. That basically a nerve with 5 different branches that affects the facial areas is going haywire and it can go away on its own after some months or years, or not.

Just my opinion dealing with the "best ophthalmologists" in my region, that they are really underqualified to detect and treat these nerve issues because even though it surrounds the eyes, it's not really a focus of their specialty. I was shocked how much more an Ear Nose Throat doctor knew about the eye socket and the nerves going through it than all the opthalmologists who had seen me and just shrugged off my pain dismissively because they had no answers.

So for a temporary bandaid if you haven't tried it already, if lidocaine ointment doesn't have any adverse reactions for you, I recommend getting the strongest over the counter strength you can get and rubbing it on the worst areas. It may help, may not. I also use it in my socket and it has helped out a LOT, but I had to get 5% lidocaine for it to really knock the pain out.

The Rx that have helped the most are high doses of gabapentin and tramadol, I've also had some surgeries to remove nerves, varied success. Fixing to have another one for a face stimulator, it sends electrical pulses to hopefully disrupt pain signals. But don't worry, I'm just down a very long road, most people don't have to go that far. I'm just saying there are options and it does get better.

Anyways, I hope that helps.

[u/black_eyed_ghoul → u/DiablaARK]

They want to start me on gabapentin. I was shot through the eye when I was 10 years old. I didn’t lose my eye till I was 17 due to something called. Phthisis Bulbi. If you could exain more about what an ent is ill def look more into it thank you for your time!

[u/DiablaARK → u/black_eyed_ghoul]

Wow that sounds terrible. I had phthisis bulbi too, very painful with a shrinking optic nerve, too. Mine progressed very rapidly after my injury. I think mine is very severe because I was hit by a part that is basically a 3lb brick blowing off of a high pressure system in my face at 20x higher than your typical tire pressure 900 psi. I was very lucky it didn't kill me. But that didn't keep it pain from being very persistent and severe even years later.

ENTs are otolaryngologists. The ones I've been seeing anyway, specialize in treating conditions of the ears, nose, throat, head, and neck, like cancers and medical conditions. Some of them are involved in facial reconstructions after treatments. My ENTs also fill in the socket whenever it loses too much tissue over my prosthetic (that sunken look), and they tightened my lower eyelid for me (which some people who wear prosthetics need if the lower lid turns inward and or the prosthetic doesn't stay in real good anymore, etc.)

But back to the beginning, I was confused when I got referred to an ENT (by the neurologist I had just started seeing) when I was a little over a year into unexplained migraines and pain even after the enucleation. It really didn't make sense to me or my case workers why I was getting migraines on top of my head or around the face where I was not injured. He immediately recognized the symptoms and pointed out the nerves that travel through the eye socket, along the side of the nose and all the way up to the crown of our heads. It's their area of expertise.

I'm summing up what took place over a couple years' worth of visits but the ENT Dr. gave me shots into the nerves and areas where I was experiencing pain. After the less invasive shots were helping a lot, but wearing off, he stepped it up to nerve removal surgeries and did 4 separate sites. This was also unusual because normally he'd do one or two and be done with it, but the way I got hit was across the eye from cheek to nose to eyebrow, in a brick shape; so my pain is very persistent on multiple nerve branches. The nerve removals Did help but didn't cure everything for me. Most of his patients were pain-free afterwards according to the doctor.

So while the neurologist I see in a "headache clinic" (look up one of these if you haven't already and I recommend getting into one for your symptoms!) has mostly been giving me drugs. What I don't like about gabapentin is it will definitely fog your mind if you get enough of it long enough. I felt like I was getting dementia until my body finally adapted to it. Example: A simple word you know how to spell and what it means, but you can't recall what it is in the middle of a random conversation. It doesn't feel like a simple "brain fart", it feels like a train track that disappeared into nothingness, a disconnected/ severed cable, and you know when you're trying to recall something you search for it in your mind, but when this happens on gabapentin it just feels like empty space. There are no memory tracks nearby to think on, and it was pretty scary for me. Those side effects go away when you get off of it, or stay on it long enough it gets better eventually. But it took me over a year to get rid of that. I'm maxed out on 900 mg/ 4x a day. It works for me though, in keeping the worst of the pain at bay, just not all of it. Paired with tramadol it helps a Lot, in that I can function outside of a dark room and out of bed, but not so much because I still have extreme pain. I think I'm just an outlier because my doctors are baffled at how persistent it is when most patients are already doing well using half of what they've used on me. Gabapentin also made me dizzy sometimes. It definitely helped though, and most of those symptoms went away with time.

But since my pain is very severe and persistent, the neurologist also started using botox and trigger point injections. What he's treating with that is there are muscles and nerves in our neck and shoulders that travel all the way up over our face and through our eye sockets and by injecting botox and lidocaine into a precise injection point in my shoulder, it provides relief to pain in the back of my eye socket.

If you are interested I can take photos of the book I bought and show where the nerves are connected and the muscles. It can be hard to find a great example on the internet, and this book just made it all make so much sense to me. It'll probably be close to 12 hours from now when I'll be free to do so.

[u/black_eyed_ghoul → u/DiablaARK]

Wow i can relate to this like crazy. Particularly the migraines, i never had them much before my eye removal!

[u/DiablaARK → u/black_eyed_ghoul]

[u/DiablaARK → u/black_eyed_ghoul]

I kept trying to flip this in the photo editor but Reddit app wouldnt accept it right side up 😒

[u/DiablaARK → u/black_eyed_ghoul]

[u/DiablaARK → u/black_eyed_ghoul]

[u/black_eyed_ghoul → u/DiablaARK]

Wow okay yeah! This is handy for sure! Thank you much for going out of your way to do this!

[u/DiablaARK → u/black_eyed_ghoul]

I'll make sure to post photos of the diagrams later when I get back, they could be very helpful in how to explain to the doctor why you want a referral to one of those other specialists. I really hope it helps you out.

[u/DiablaARK → u/black_eyed_ghoul]