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Good Evening Everyone,
Before I get started, I wanted to extend my deepest thanks to all of you for the community that I have found here. I have literally read thousands of posts here over the course of the last two months (hard to believe I know) and have learned so very much from your stories, questions, anxieties, battles, solutions and successes - I have found a certain peace here that I haven't found anywhere else on the web. If you are reading this - thank you for your contributions.
My story is quite bizarre as I have not been able to find a single person or medical record on the internet to match what has happened to me over the last couple months. Basically I have combined two separate issues together to make a monster of a situation. I am posting here in case there is another person who comes across my story and has experienced something like this - they will know they are not alone. I will try to be as succinct as possible while at the same time providing details about what has happened to me.
36 year old male - nearsighted - no health issues, married to a wonderful woman who has put up with me for two months and two daughters who I strive to get better for.
Lasik Operation - Early November 2018
I had -5.0 prescriptions in both eyes. I wore contacts for a long time and my eyes were getting dry at night. I started to have to wear glasses again. I decided in ignorance to pursue lasik, which would solve my dry eye problem. Even though I am a research minded individual, I did not do enough research (if you are reading this as a post lasik casualty you know exactly what I mean). I was told mild dry eye and visual distortions would be the extent of my issues. Here are my specific circumstances:
- Surgery was uneventful - was given a xanax before - surgery was about 1 hour from my house. By the time I got home, I was already in mild pain and could not fall asleep as I was instructed. The next four hours were the most painful of my life. Indescribable. Literally arched my back at times in bed and cried out in pain several times. Someone online I read described the pain as "insects with razor blades for feet, going all over my eyes" - that's as close as I can come to truth. I've read some people experience this but for most they are just uncomfortable - this sets my mind alight there there is something wrong here. Fell asleep at some point and woke up 5 hours later. Pain had subsided and was minimal.
- Week one - eyesight is near perfect after a couple days. Mild pain, some headaches. Eyes are dry, add drops incessantly
- Day 9 - I go outside for around 30 minutes with sunglasses on - when I come in both eyes start hurting and increase in pain to around 3/4ths of day 1. Looking back on it I believe this was neurological pain vs dry eye. Go to the doctors office for an emergency visit the next day at 8AM (event happened at 2PM) - puts in numbing drops (pain goes away) looks at eye - finds no corneal "burning" or issues. Pain subsided by 12PM.
Here is where my story deviates from anything I've read about. At this point I begin feverishly searching the internet to find out what has happened to me. I've had anxiety for the first 10 days now because of the pain I've gone in and I now know I am somewhat of a sensitive person. I become convinced I have corneal neuralgia and I literally ready every paper, document, site on the matter. It starts to drive me slowly insane with anxiety. Perry Rosenthal becomes a household name to me.
I develop symptoms that neurological in nature during this time and do not know which came first - the chicken or the egg. I first develop highly sensitized eyes - meaning if I would touch my eyeball or rub them the pain is intense (allodynia) and it "echos" over time (usually 1.5 days). I develop sensitivity in the skin around my eyes - specifically my lower forehead. My eyes are incessantly dry, and I experience true "dry eye" burning without putting in drops. Drops make the burning stop. However - my eyes are not red - they are white. Again, fueling my suspicious of neurological issues.
By week 3 I am in full on depression. I constantly think about corneal neuralgia, which makes more and more sense as new symptoms develop quickly. I first develop myoclonus (muscle jerking in hands and legs) which starts at night and hyperacusis - sensitivity to sound. My nervous system goes into fully hypersensitive mode. My teeth are sensitive on the top (clearly all linked by the trigeminal nerve). Followed within days by burning sensations of my skin and pins and needles all over my body (chest, arms, legs, scalp, forehead). I get constant headaches behind my eyes, almost like migraines. One eye, both eyes and sometimes starts there and moves to my head.
This continues to feed my anxiety and now that I have so many neurological symptoms I search the internet to find every single disease I could have - MS, Huntingtons, ALS, Parkinsons - you name it, I have it. My PCP is baffled by all of this. I stop going to the lasik doctors as they tell me my eyes look great (lol). Neurologist runs tests, schedules an MRI. I am literally in shambles, full depression, have lost desire to do anything or feel anything and have become a shell of myself. I am at this point having extreme sound sensitivity and my body is twitching during the day time. No tests find anything wrong with me.
Sorry to be so detailed. Here is what I believe has happened now that I have done some empirical testing of a hypothesis my wife came to me with (and she was right).
-The original burning issue was certainly a nerve issue, not an inflammation issue like many of you have. Because of this, I developed extreme anxiety and became hypochondriatic- very extreme - which caused me to have something called "anxiety hypersensitivity" - which basically means my body was in a prolonged state of flight or fight for so long that my body is now caught in a cortisol.feedback loop. The more anxiety I had, the more issues I had, and therefore the more anxiety I got.
-I am not sure if the hypersenstivity started with Lasik and I made it worse, or I created it from thin air - and never will know. All I know is anxiety made things much worse and made me literally mad.
-My dry eye is linked directly to anxiety in the sense that after testing this, I now know when I have anxiety I get more pain in my eyes and when I have less it fades away. Literally my nervous system is so hypersenstive with cortisol for so long it causes me to react to my own stress from a pain standpoint and I cannot tell what is real pain and what I create (or enhance).
-My eyes are white during the day, and only get red at night. I believe I sleep with them somewhat open. I use Celluvisc at night to help with this.
Here is my problem and how I am going to address it (if you've stayed with me this long):
The pain in my left eye is now a constant dull at 2 months after lasik - probably because my nerves are growing back now. The pain is not that bad- yet - it is more like a dull ache that gets worse with anxiety, or wind, or cold and then fades to the background again. Let me reiterate I am unsure how much is lasik-caused and how much I caused but I've moved beyond that now - I am slowly developing neuralgia due to the fact that my nervous system is in overdrive and hypersensitive to everything. Eyeball is hypersensitive and therefore the nerves are as well (if I bump my eyeball my entire body feels like I have been nerve poisoned, the pain is four time as bad as it should be and lasts for a day or so before slowly fading away). Have not had confocal done yet but will in a couple weeks. Regardless of that outcome, with the nervous system on full tilt I need to fix this problem. I recognize I am still early in the game and can alter things. I've identified the anxiety, and although I have good and bad days (dictated by my eyes mostly and dryness) I have begun to come out of this. It takes upwards of 6-10 months for your nervous system to calm down after the fact, leading me to believe that I am screwed here and things are going to get much worse.
Unlike almost all of you, I do not seemingly have a dry eye inflammation disease or lack of tear production, but was able to create/enhance one with my mind through extreme health anxiety and depression (and possible nerve inflammation from the lasik procedure). That being said - can't cry over spilt milk - I need to figure out how to fix this. I've done the following:
- Meditation daily
- Light exercise
- Recognizing I have health anxiety and I need to stop looking to Dr. Google for every symptom every day
- Recognizing my dry eye has an anxiety element and I need to control that to reduce it (which works)
- Using natural supplements (Dr. wanted me to go on Lexapro and I refused, I will get every side effect known to man and know I will get worse dry eyes). L-Theanine, Taurine, Magnesium, 5-HTP - all to combat the stress)
Clearly I now have an overtly sensitive trigeminal nerve - sound sensitivity, teeth sensitivity, skin sensitivity around scalp all points to this - and all of this matches symptoms some people who have corneal neuropathy have. I probably do not have the full blown pain yet becomes nerves are coming back now.
I have included a link below that I found about a device called "True Tear" - which I have read about on this forum as well - which stimulates the trigeminal nerve to cause tear production. I have read that many people with severe dry eye that responds to no other treatment find this as a way to help their symptoms. I deduce, along with the author below, that their symptoms are probably corneal neuragia and that "overriding" the signals, much like what a TENS device does to the body, can basically desensitize the nerves. I am talking to my ophthalmologist about this on Saturday. I have begged for autogulous tears (and he is kind but thinks I'm a basket case I am sure) and we haven't gotten there yet. I am skipping all of the steroids/restasis routes as this is not inflammation - my eyes are white).
I will post my results on this. If he will not prescribe to me I am going to purchase a TENS device and put on my face like someone being treated for trigeminal neuralgia and go that route.
If anyone has anything to contribute about corneal neuralgia and the True Tear device anecdotally or through personal experience please let me know.
I am early in my healing and wish I could take this nightmare that only gets worse and worse back. I almost drove my wife insane quite frankly, and myself. I hope my story helps someone out there and I will keep the group informed of my success or failure here. I will get better (repeat over and over again in my head). I continue to look at the positives - I have never appreciated life so much, I recognize that I was on "autopilot" in life with the dumbest complaints, I have an incredible amount of empathy for suffering people now (and very much for the stories I read here, many of which are far worse than my current condition where people have suffered literally years) and I have found God again and he has given me strength.
If you have corneal neuropathy - please take a look at the blog post below - I know that as a last ditch resort Rosenthal would proscribe electronic scrambler thearpy - I believe True Tear/TENS device may be a low cost solution to stimulate the nerves and help override the allodynia/hypergesia that is driving the neuropathy at least in early stages (I am not a doctor - please draw your own conclusions and consult with your doctor on this).
I found much solace in this site and wanted to contribute. One thing of value I have learned is that anxiety only makes things worse and I fully recognize that is easier to say than to believe/follow but for me I have never been so far out of my mind and I probably could have avoided this scenario had I simply trusted that I would heal over time. Of course, I could be wrong here as well. I will never know which came first, the chicken or the egg.
With grace, thankfulness and appreciation,
ManyThanks
Before I get started, I wanted to extend my deepest thanks to all of you for the community that I have found here. I have literally read thousands of posts here over the course of the last two months (hard to believe I know) and have learned so very much from your stories, questions, anxieties, battles, solutions and successes - I have found a certain peace here that I haven't found anywhere else on the web. If you are reading this - thank you for your contributions.
My story is quite bizarre as I have not been able to find a single person or medical record on the internet to match what has happened to me over the last couple months. Basically I have combined two separate issues together to make a monster of a situation. I am posting here in case there is another person who comes across my story and has experienced something like this - they will know they are not alone. I will try to be as succinct as possible while at the same time providing details about what has happened to me.
36 year old male - nearsighted - no health issues, married to a wonderful woman who has put up with me for two months and two daughters who I strive to get better for.
Lasik Operation - Early November 2018
I had -5.0 prescriptions in both eyes. I wore contacts for a long time and my eyes were getting dry at night. I started to have to wear glasses again. I decided in ignorance to pursue lasik, which would solve my dry eye problem. Even though I am a research minded individual, I did not do enough research (if you are reading this as a post lasik casualty you know exactly what I mean). I was told mild dry eye and visual distortions would be the extent of my issues. Here are my specific circumstances:
- Surgery was uneventful - was given a xanax before - surgery was about 1 hour from my house. By the time I got home, I was already in mild pain and could not fall asleep as I was instructed. The next four hours were the most painful of my life. Indescribable. Literally arched my back at times in bed and cried out in pain several times. Someone online I read described the pain as "insects with razor blades for feet, going all over my eyes" - that's as close as I can come to truth. I've read some people experience this but for most they are just uncomfortable - this sets my mind alight there there is something wrong here. Fell asleep at some point and woke up 5 hours later. Pain had subsided and was minimal.
- Week one - eyesight is near perfect after a couple days. Mild pain, some headaches. Eyes are dry, add drops incessantly
- Day 9 - I go outside for around 30 minutes with sunglasses on - when I come in both eyes start hurting and increase in pain to around 3/4ths of day 1. Looking back on it I believe this was neurological pain vs dry eye. Go to the doctors office for an emergency visit the next day at 8AM (event happened at 2PM) - puts in numbing drops (pain goes away) looks at eye - finds no corneal "burning" or issues. Pain subsided by 12PM.
Here is where my story deviates from anything I've read about. At this point I begin feverishly searching the internet to find out what has happened to me. I've had anxiety for the first 10 days now because of the pain I've gone in and I now know I am somewhat of a sensitive person. I become convinced I have corneal neuralgia and I literally ready every paper, document, site on the matter. It starts to drive me slowly insane with anxiety. Perry Rosenthal becomes a household name to me.
I develop symptoms that neurological in nature during this time and do not know which came first - the chicken or the egg. I first develop highly sensitized eyes - meaning if I would touch my eyeball or rub them the pain is intense (allodynia) and it "echos" over time (usually 1.5 days). I develop sensitivity in the skin around my eyes - specifically my lower forehead. My eyes are incessantly dry, and I experience true "dry eye" burning without putting in drops. Drops make the burning stop. However - my eyes are not red - they are white. Again, fueling my suspicious of neurological issues.
By week 3 I am in full on depression. I constantly think about corneal neuralgia, which makes more and more sense as new symptoms develop quickly. I first develop myoclonus (muscle jerking in hands and legs) which starts at night and hyperacusis - sensitivity to sound. My nervous system goes into fully hypersensitive mode. My teeth are sensitive on the top (clearly all linked by the trigeminal nerve). Followed within days by burning sensations of my skin and pins and needles all over my body (chest, arms, legs, scalp, forehead). I get constant headaches behind my eyes, almost like migraines. One eye, both eyes and sometimes starts there and moves to my head.
This continues to feed my anxiety and now that I have so many neurological symptoms I search the internet to find every single disease I could have - MS, Huntingtons, ALS, Parkinsons - you name it, I have it. My PCP is baffled by all of this. I stop going to the lasik doctors as they tell me my eyes look great (lol). Neurologist runs tests, schedules an MRI. I am literally in shambles, full depression, have lost desire to do anything or feel anything and have become a shell of myself. I am at this point having extreme sound sensitivity and my body is twitching during the day time. No tests find anything wrong with me.
Sorry to be so detailed. Here is what I believe has happened now that I have done some empirical testing of a hypothesis my wife came to me with (and she was right).
-The original burning issue was certainly a nerve issue, not an inflammation issue like many of you have. Because of this, I developed extreme anxiety and became hypochondriatic- very extreme - which caused me to have something called "anxiety hypersensitivity" - which basically means my body was in a prolonged state of flight or fight for so long that my body is now caught in a cortisol.feedback loop. The more anxiety I had, the more issues I had, and therefore the more anxiety I got.
-I am not sure if the hypersenstivity started with Lasik and I made it worse, or I created it from thin air - and never will know. All I know is anxiety made things much worse and made me literally mad.
-My dry eye is linked directly to anxiety in the sense that after testing this, I now know when I have anxiety I get more pain in my eyes and when I have less it fades away. Literally my nervous system is so hypersenstive with cortisol for so long it causes me to react to my own stress from a pain standpoint and I cannot tell what is real pain and what I create (or enhance).
-My eyes are white during the day, and only get red at night. I believe I sleep with them somewhat open. I use Celluvisc at night to help with this.
Here is my problem and how I am going to address it (if you've stayed with me this long):
The pain in my left eye is now a constant dull at 2 months after lasik - probably because my nerves are growing back now. The pain is not that bad- yet - it is more like a dull ache that gets worse with anxiety, or wind, or cold and then fades to the background again. Let me reiterate I am unsure how much is lasik-caused and how much I caused but I've moved beyond that now - I am slowly developing neuralgia due to the fact that my nervous system is in overdrive and hypersensitive to everything. Eyeball is hypersensitive and therefore the nerves are as well (if I bump my eyeball my entire body feels like I have been nerve poisoned, the pain is four time as bad as it should be and lasts for a day or so before slowly fading away). Have not had confocal done yet but will in a couple weeks. Regardless of that outcome, with the nervous system on full tilt I need to fix this problem. I recognize I am still early in the game and can alter things. I've identified the anxiety, and although I have good and bad days (dictated by my eyes mostly and dryness) I have begun to come out of this. It takes upwards of 6-10 months for your nervous system to calm down after the fact, leading me to believe that I am screwed here and things are going to get much worse.
Unlike almost all of you, I do not seemingly have a dry eye inflammation disease or lack of tear production, but was able to create/enhance one with my mind through extreme health anxiety and depression (and possible nerve inflammation from the lasik procedure). That being said - can't cry over spilt milk - I need to figure out how to fix this. I've done the following:
- Meditation daily
- Light exercise
- Recognizing I have health anxiety and I need to stop looking to Dr. Google for every symptom every day
- Recognizing my dry eye has an anxiety element and I need to control that to reduce it (which works)
- Using natural supplements (Dr. wanted me to go on Lexapro and I refused, I will get every side effect known to man and know I will get worse dry eyes). L-Theanine, Taurine, Magnesium, 5-HTP - all to combat the stress)
Clearly I now have an overtly sensitive trigeminal nerve - sound sensitivity, teeth sensitivity, skin sensitivity around scalp all points to this - and all of this matches symptoms some people who have corneal neuropathy have. I probably do not have the full blown pain yet becomes nerves are coming back now.
I have included a link below that I found about a device called "True Tear" - which I have read about on this forum as well - which stimulates the trigeminal nerve to cause tear production. I have read that many people with severe dry eye that responds to no other treatment find this as a way to help their symptoms. I deduce, along with the author below, that their symptoms are probably corneal neuragia and that "overriding" the signals, much like what a TENS device does to the body, can basically desensitize the nerves. I am talking to my ophthalmologist about this on Saturday. I have begged for autogulous tears (and he is kind but thinks I'm a basket case I am sure) and we haven't gotten there yet. I am skipping all of the steroids/restasis routes as this is not inflammation - my eyes are white).
I will post my results on this. If he will not prescribe to me I am going to purchase a TENS device and put on my face like someone being treated for trigeminal neuralgia and go that route.
If anyone has anything to contribute about corneal neuralgia and the True Tear device anecdotally or through personal experience please let me know.
I am early in my healing and wish I could take this nightmare that only gets worse and worse back. I almost drove my wife insane quite frankly, and myself. I hope my story helps someone out there and I will keep the group informed of my success or failure here. I will get better (repeat over and over again in my head). I continue to look at the positives - I have never appreciated life so much, I recognize that I was on "autopilot" in life with the dumbest complaints, I have an incredible amount of empathy for suffering people now (and very much for the stories I read here, many of which are far worse than my current condition where people have suffered literally years) and I have found God again and he has given me strength.
If you have corneal neuropathy - please take a look at the blog post below - I know that as a last ditch resort Rosenthal would proscribe electronic scrambler thearpy - I believe True Tear/TENS device may be a low cost solution to stimulate the nerves and help override the allodynia/hypergesia that is driving the neuropathy at least in early stages (I am not a doctor - please draw your own conclusions and consult with your doctor on this).
I found much solace in this site and wanted to contribute. One thing of value I have learned is that anxiety only makes things worse and I fully recognize that is easier to say than to believe/follow but for me I have never been so far out of my mind and I probably could have avoided this scenario had I simply trusted that I would heal over time. Of course, I could be wrong here as well. I will never know which came first, the chicken or the egg.
With grace, thankfulness and appreciation,
ManyThanks
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