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Lasik, Anxiety and a Unique Bizarre Neurological Experience - My Story

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  • Lasik, Anxiety and a Unique Bizarre Neurological Experience - My Story

    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
    Ocular Surgery News | Anyone who takes care of patients with dry eye disease has had this experience. A patient comes into the office complaining of severe, life-altering eye pain, and for the life of you there is nothing you can find on his or her exam that explains their pain. They arrive on several DED medications and have a history of undergoing “save the day” treatments such as LipiFlow or intense
    Last edited by ManyThanks; 05-Jan-2019, 20:36.

  • #2
    So I have to ask a few questions. First off, Iím sorry youíre going through this. Eye problems can suck the life out of you. That said, have you had a confocal microscopy done? What doctor confirmed the diagnosis or neuralgia? Have you had a full exam by a dry eye specialist? Meaning tear breakup time, schirmers, inflammadry, fluorescin and lissimine green staining, flip your eyelids, etc.

    ill just say this, and itís not to dismiss you, but to give you a different perspective. I thought I had 20 things I didnít have because no one was properly diagnosing me. It took 8 doctors before I got my diagnosis. Even after my diagnosis, my right eye was so bad, I was sure I had neuralgia. I didnít. But I was so stressed from the pain and the fear of what might happen, I have increased pain. I would shake too, itís called akethesia. The stress I was under was so strong it caused constant suicidal ideation and an inability to function or make rational decisions.

    Im not saying you donít have neuralgia, you may. But I think you are stressed and in pain. Iím so much pain that you think it can only be neuralgia. But it coukd honestly be so many things. You could have neuralgia and god knows what else. Making things so much worse. I think you definitely have some other things going on. I may be assuming here, but it sounds like youíve only seen the lasik doc correct? When was the surgery? If you got some other opinions, you may find something very simple that could help you.

    Good luck, hopefully I didnít offend you. I just think that you may be jumping the gun and causing yourself more strsss, as I did. I literally this week finally mentally felt better after 13 months of this. But I got a diagnosis and anszingcare about five months ago. I have floppy eyelid syndrome. I have no cornea issues really. The whole time, I thought most of the pain was coming from the cornea. It was the lid. Again, I know we have different situations, but Iím saying this because I think there is hope for you. Hang in there and keep looking for answers.

    Comment


    • #3
      Hi ManyThanks and welcome!

      A lot of your story is a very familiar pattern to me, with many of your own unique features of course as we all have... but the ramp-up and spinning out of control. The availability of so much data online really feeds that cycle and makes it spin a lot faster than it did when I first had LASIK.

      I agree with some of Dowork123's line of questioning here, as regards diagnosis. when you're under this stress, do what works for you as regards whatever is going to bring pain and anxiety under better control.

      I will never know which came first, the chicken or the egg.
      The mental health impact of eye disease in general is enormous... from our biological wiring to fear blindness to stress about all the different ways our life will be impacted by what's going on to the most basic psychological effects of pain as such, independent of the eyes specifically. However, after an elective laser eye surgery there is a compounding of factors that goes on that is indescribably, wickedly intense. And if there's anything already there like very mild bipolar or ocd, there's nothing like an adverse LASIK outcome to make it ramp up to scary levels quickly. Just manifests differently in every individual. It's a hard path.

      But... it gets better. Most people can't hear that when they're in their hardest place. But it does get better. Time is a big factor and these days I think people are finding it much harder to give it time then back 'in my day' - even though back then, we had no patterns, no history to draw from, we were writing new handbooks with our own lives. Now we know a lot more but there's not yet necessarily any very efficient means to convey that information, short of exactly what you're doing, reading people's stories and such. Even that can be very misleading, because the vast majority of people who get better naturally move on, therefore they are invisible, therefore they didn't get better right? Sigh.
      Rebecca Petris
      The Dry Eye Zone

      Comment


      • #4
        I am so very thankful that both of you responded to me...and you both are exactly right. My anxiety has brought out symptoms I didn't think a human being could, with the power of their own brain, create. I even told my wife a few weeks ago "I would have to be a superman to create these effects from thin air". Now I know that is the case.

        Hi Dowork - no offense at all! I know people can be touchy when it comes to their personal experience but I do agree with your very rational methodology. I am having confocal done in a month or so (only month 2 of lasik, so haven't had much growth back yet). I am not in extreme pain at this time.

        I am experiencing pain in my eye that feels neurological vs dry eye - more of a "pulling" sensation and the fact that my entire eyeball, including the scelera, is highly sensitive to touch (a simple bump causes pain for a couple of days. I've assumed that means that when the nerves grow back in my cornea, they will be sensitized too, because of the anxiety and the fact that I've made my entire body, more or less, sensitive. The fact that when I add eye drops, the eyes still "feel" dry. I am speculating and you are correct to call that out. What is driving my anxiety is the knowledge that if I do have a problem from a neuralgia standpoint, early intervention is my best shot to fix it...that is what is "great" about these feelings, they make you feel like you are on a time table and must learn everything you can to survive. I could very well have nothing but normal healing feeling (although I have not read about anyone after lasik having a sensitive eyeball, or sensitive hearing) but again, I have never felt these feelings and it is all speculation. Reading stories never puts you truly in someone's head to "feel" what healing should feel like. Thank you so much for writing back Dowork - I appreciate it so very much more than you know.

        Hi Rebecca - you are so correct on everything you said - including how because of all of the information out there it is overwhelming from a sense of fear - so many people fighting daily battles to get healed (I stopped reading the depression forum, I couldn't take it mentally). and so many "what ifs" that could happen now as opposed to the veterans like yourself that pioneered this. It is both good and bad in a sense. I owe you a debt of gratitude, this site has helped me so much in the last month, you truly have no idea. Not just all of the bad things that could happen, but all of the strategies to make my eyes feel better - and many of them have worked

        Thank you both so much...so much. I am working with a therapist with CBT and my PCP who is an awesome doctor and wants me to get better quick so I stop visiting him every other week. I'm staying off of google as much as possible, suffice to say I know more about the eye than I ever hoped I would. They should give me an honorary degree in ophthalmology.

        With kindness and respect,
        ManyThanks

        Comment


        • #5
          Originally posted by ManyThanks View Post
          I am so very thankful that both of you responded to me...and you both are exactly right. My anxiety has brought out symptoms I didn't think a human being could, with the power of their own brain, create. I even told my wife a few weeks ago "I would have to be a superman to create these effects from thin air". Now I know that is the case.

          Hi Dowork - no offense at all! I know people can be touchy when it comes to their personal experience but I do agree with your very rational methodology. I am having confocal done in a month or so (only month 2 of lasik, so haven't had much growth back yet). I am not in extreme pain at this time.

          I am experiencing pain in my eye that feels neurological vs dry eye - more of a "pulling" sensation and the fact that my entire eyeball, including the scelera, is highly sensitive to touch (a simple bump causes pain for a couple of days. I've assumed that means that when the nerves grow back in my cornea, they will be sensitized too, because of the anxiety and the fact that I've made my entire body, more or less, sensitive. The fact that when I add eye drops, the eyes still "feel" dry. I am speculating and you are correct to call that out. What is driving my anxiety is the knowledge that if I do have a problem from a neuralgia standpoint, early intervention is my best shot to fix it...that is what is "great" about these feelings, they make you feel like you are on a time table and must learn everything you can to survive. I could very well have nothing but normal healing feeling (although I have not read about anyone after lasik having a sensitive eyeball, or sensitive hearing) but again, I have never felt these feelings and it is all speculation. Reading stories never puts you truly in someone's head to "feel" what healing should feel like. Thank you so much for writing back Dowork - I appreciate it so very much more than you know.

          Hi Rebecca - you are so correct on everything you said - including how because of all of the information out there it is overwhelming from a sense of fear - so many people fighting daily battles to get healed (I stopped reading the depression forum, I couldn't take it mentally). and so many "what ifs" that could happen now as opposed to the veterans like yourself that pioneered this. It is both good and bad in a sense. I owe you a debt of gratitude, this site has helped me so much in the last month, you truly have no idea. Not just all of the bad things that could happen, but all of the strategies to make my eyes feel better - and many of them have worked

          Thank you both so much...so much. I am working with a therapist with CBT and my PCP who is an awesome doctor and wants me to get better quick so I stop visiting him every other week. I'm staying off of google as much as possible, suffice to say I know more about the eye than I ever hoped I would. They should give me an honorary degree in ophthalmology.

          With kindness and respect,
          ManyThanks
          Well, youíre a rational person and thatís a great start. You may be having irrational thoughts and feelings, but I can tell you understand whatís going on here and youíre open to change. I think the cbt is a great idea if it can help. When I was in my worst pain, cbt, yoga, meditation, mindfulness, nothing worked. I was in too much pain. So if youíre getting benefit from these mental exercises, thatís great!

          I think that youíre Doug great considering. Youíre only two months after lasik and it seems youíre tryjg to figure things out early. I see most people wait a while, I think because most doctors tell them they will get better in time. So itís good youíre startijg now. i donít know if you mentioned blood serum, but I use 50% concentration and it is one of the best drops I use. That should help with nerve regeneration.

          Im not sure what else to say, I think you have a good handle on what to do. Keep us posted, I genuinely hope things resolve for you.

          Comment


          • #6
            I wanted to provide an update on my condition. I have now seen a corneal specialist and although I have not had a confocal microscope done (I am three months out so he says it wonít show much) he has given me an initial diagnosis of corneal neuropathy based on my extreme orafacial symptoms. Unlike many of your experiences I was able to find a doctor who is familiar with corneal neuropathy and listened to my story without dismissing me. I have developed facial pain, pain in my ears and sometimes in my throat. The feeling is that of nerve pain and is electrical in nature. As I wrote above my entire nervous system has reacted to this pain. My eyes are far less dry but hurt more and more as time goes on, and the pain from the eyes radiates into my cheeks and into my teeth. The corneal specialist has started me on serum eyedrops 20% and FML drops. I believe I have the beginnings of trigeminal neuralgia that is developing over time.

            I have downloaded all of the paperwork that I could find online from Dr. Rosenthal and have proceeded to begin to fix this the best that I can. On Monday I am going to see my PCP about starting Nortrypiline. Also, something I canít find much information on on these forums or on the Internet in general I have located a Doctor who works in a ketamine clinic, and was one of the first people to actually listen to my entire story with Interest. He believes that I have the beginnings of CRPS Ė chronic regional pain syndrome. Much like when somebody has a hip surgery done and their nervous system overreacts he believes that the same thing happened in my face with my trigeminal nerve which is why I have increased sensitivity to hearing to tastes to smells and sensitivity in my teeth. He has Contacted a colleague of his who works at the Cleveland clinic and is a corneal specialist to see if a low-dose ketamine infusion will help ameliorate or reduce central sensitization. He believes it is possible that we could reset the pain of the trigeminal nerve. My eyes are not as bad as many of yours yet and I am trying to make sure I do everything in my power To control the pain before it becomes centralized. The funny thing is I only have to put eyedrops in once a day now but they are beginning to hurt twice as much as when they were dry. And nerve pain feels completely different to me than dryness. It is more of an electrical cake and a shooting feeling than a burning sensation although that will probably start soon.

            Please pray for me as I pray for you. Three months ago I was healthy. Getting over the depression is incredibly hard. I caught this early and hopefully this is meaningful to my case.

            i have two beautiful girls 9 and 5 and I am devastated they will have to see their dad in incredible pain. Not counting the financial implications for my family. This is horrific.
            Last edited by ManyThanks; 01-Mar-2019, 19:14.

            Comment


            • #7
              Have you taken either Trileptal or Neurontin for the pain? Have similar problems, Trileptal saved me 10 years ago.

              Comment


              • #8
                I am taking palmitoylethanolamide at this point - trying to go the natural route. Pain isnít incredible yet just dull and aches. I have a bizarre concurrent issue that seems to be related to my gut. My legs, hands and face twitch throughout the day. I have figured out itís related to my gut. I had three rounds of anti-biotics as doctors though I had a sinus infection. What has happened is I am extremely sensitive to food, supplements and drugs. If I take something I get nocturnal Myoclonus. Not many people have it but I found a Facebook page for it. They are strong hypnic jerks or strong twitches that come on at the verge of falling asleep. They basically make you an insomniac. I was up for 5 days straight (I estimate I got maybe 30 min of sleep). Before that up 7 days. I figured out it was my diet over the last few days. I was able to sleep again. It was made worse by Ativan (which is the only thing that prevented it). Itís a nice side effect that makes this 30 times worse

                check this out for more info if interested:

                https://themanwhocannotsleep.wordpress.com/

                Thank you for relying so much.

                Manythanks

                Comment


                • #9
                  Your story is my story. I couldnít believe what I was reading. Literally exactly the same story, except my nightmare started with cataract surgery. Would love to hear from you on how to cope and manage to get the neurological issues in check. Doretta (Lupos23@aol.com)

                  Comment


                  • #10
                    I know many medications for your psyche can dry out your eyes. But if you find yourself unable to sleep, or think, or if crying makes your eyes feel painul, in my case, I could not only take medications for my eyes. My mind and my eyes are closely interacted.

                    When you feel everything is dark, do not give up hope. Find a doctor to talk to, explain your mental anguish - it is just as important as the state of your eyes.

                    And find a routine. If taking a walk helps you ease the stress, take that time.

                    And most importantly, take one day at a time. It is easy to give up if you see your whole life ahead of you in pain. The pain you feel today will not be constant. Accept today, and do what you love within your limits.

                    Comment

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