And One Year Later...

[pythonidler]

This post is an update to the last post I made on this forum in June 2018, explaining why I was quitting the forum. It is, believe it or not, an abbreviated version of everything that has happened to me since then.

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Almost one year ago, I had to quit this forum and significantly curtail my screen time due to increased pain sensitivity in my eyes. Whereas before I was able to spend 1-2 hours on the computer at a time, when I quit I could only spend a few minutes on the computer. Shortly after I quit the forum I started to close my eyes all day, every day out of fear that my pain would increase if I didn’t close my eyes. However, despite the fact that my eyes were closed most of the day, my day-to-day pain still increased.

One July afternoon, I started feeling a burning sensation in my body (I'd compare this sensation to a minor sunburn on the surface of the skin). During the following week, the burning sensation got worse while my eye pain went away entirely. I talked to several neurologists about my symptoms (which also included occasional chest, stomach, and bladder pain), and they diagnosed me with “central pain syndrome”, a disorder where the brain “creates” pain signals where there shouldn’t be any.

I was convinced that my eye pain was being manifested as body pain (a condition known as “referred pain”), so I took more precautions to close my eyes to avoid this pain. However, as I mentioned before, the burning sensations and pain were still increasing.

In December 2018, I ended up having to go to an inpatient psychiatric facility on the recommendation of my psychiatrist, due to increasing thoughts of suicide. And though I was prescribed some anti-depressants that also helped with the body pain, the relief they provided was just temporary. My pain continued to increase after I was released from the inpatient facility.

The turning point for me was when I saw a neuro-ophthalmologist in late February 2019. I spent a long time giving my history, and he performed both neurological and ophthalmological exams on me. He told me that he didn’t think that my body pain was originating from my eyes; he believed that my body pain was being generated by my brain separately.

Although I had seen three prior neurologists who said essentially the same thing, it was the neuro-ophthalmologist who changed my world. Within four days of seeing him, I went from closing my eyes 80% of the day to not closing them at all. My pain decreased significantly and I started doing things to make me independent again: things like reading, driving, and using a computer. I’m slowly getting back my life.

So what was this pain caused by? Anxiety, mainly. The pain only lessened once I was able to both mentally and physically relax, and not think about closing my eyes to prevent the pain from getting worse. I would’ve never thought the brain was capable of such treachery.

The lesson here is that there are other things besides your eyes which cause pain. Multiple neurologists and mental health professionals confirmed to me that both depression and anxiety can exacerbate pain. If you’re highly depressed or anxious, seek help. Not just for your mental health (which is hugely important and underrated, IMO), but potentially for pain as well.

[Guest]

Within four days of seeing him, I went from closing my eyes 80% of the day to not closing them at all.

May I ask what medication you took during those four days that made the pain stop? Thanks

[hopeful_hiker]

This is fascinating. I’ve read a couple of studies linking dry eyes and PTSD (of course, cause - causation unclear), as well as severity of GERD (heartburn) symptoms and corresponding physical signs.

I’ve experienced similar issues last year. Before the dry eye issues, I began experiencing strange sensations in my esophagus. I felt as if food would accumulate there. It was hard to sleep. I stopped eating solid foods. I was afraid I would choke. I would eat a banana bread (because it’s soft) and feel like I’ve swallowed glass. I started heaving heartburn after every single meal. I lost 8 kilos and I am a regular person. Not overweight. My fingers started to twitch. I had aches in joints.

I thought I had an auto-immune condition. After getting dry eyes on top of these issues, I was convinced I had Sjogren’s. My mouth was dry for two months!

In the end, all of these symptoms disappeared as I regained a modicum of mental stability. At the time I was taking Ativan sometimes daily. I had acute panic attacks for a month and anxiety. I did not sleep for two weeks straight. And on top of that I got tinnitus (no noise damage).

I still have dry eyes (much better signs now and better overalls). And I still have tinnitus. I had all blood work done and a lip biopsy.

Fingers crossed but it’s been 1.5 years since that time and these symptoms have not returned.

So reading your story reinforces my experience with mental health effects on the body. I absolutely love the book “You are not your pain”. They discuss some of the pathways that link pain and the brain/mental health.

[farmgirl]

Thanks for the update pythonidler and I am so happy that you are finding answers, not only to your eye pain but to your body pain in general.

It has been my experience that the mind is incredibly powerful. In 2003 I very suddenly, in my sleep one night, developed a strange condition where if I was touched in stage one or two sleep I would get this huge startle reflex and then whip into this seizure like state flinging only my torso from the neck down to the waist. I could see but not hear, I always knew exactly where I was and what was happening but I was powerless to stop it. If I was pinned in any way, even just my arms it would stop. From the night it started it there was never an exception. If I was touched I would react, the question was how violent would the reaction be. I had ruptured a disc and even torn the muscles attached to the end of the clavicle. Those caused me agony for 8 months to a year.

I concluded that my mind must be creating the condition because there was nothing medically that could be identified. Three years later and failure to find a diagnosis I underwent 6 powerful hypnosis sessions with a very experienced hypnotist. We did, among other things 2 past life regressions (I do not believe I have had past lives, but that doesn't matter), and 'rewired my brain'.
Gradually it improved and went away. That was in 2006 and in the ensuing 13 years I have never done it again since it stopped completely.

Never underestimate the power of the mind and I would suggest that you might benefit from hypnosis.

[Fenix]

Hi pythonidler , as I said in your old thread, I am pretty sure that the root cause is not the prolonged use of computers. And this thread seems to enforce my opinion. I'm an anxious person and during years I had all kind of psychosomatic symphtoms like frequent urination, gastro-esophageal reflux disease, etc.
Dry eye appeared after I started working in front of a computer 8+ hours daily in a company 50km far from home. The stressful job plus the stress of travels, I can say that I don't know what "Relax" is anymore. Even if I try to spend the weekend on bed or going out with friends I can't relax.
Dry eye made me more stressed and nervous because I don't want to lose the job and I also want to be able to read books, play videogames and watch tv series.
Also, I did all kind of exams, all negative! I saw 5 ophtamologists. I did a CT and a magnetic resonance, all negative.

So, I agree with you. It think is related to stress & anxiety.

"My pain decreased significantly and I started doing things to make me independent again: things like reading, driving, and using a computer. I’m slowly getting back my life."

Now are you able to read a book for more than 30 minutes without feeling dry eye symptoms?

[hannahmaywils]

pythonidler

Hey,

I have been reading some of your previous posts regarding PRP injections into the lacrimal gland. I understand you had a negative experience with this ?

May I ask did you ever recover from your negative experience ?

I was debating getting this done. What are your thoughts ? Was their any improvement at all?

[pythonidler]

Hi pythonidler , as I said in your old thread, I am pretty sure that the root cause is not the prolonged use of computers.

I disagree. There's a strong link between MGD and computer use. My dry eye was almost definitely caused by excessive computer use over the course of several years (I was a frequent video game player and a computer enthusiast).

I'm an anxious person and during years I had all kind of psychosomatic symphtoms like frequent urination, gastro-esophageal reflux disease, etc.
Dry eye appeared after I started working in front of a computer 8+ hours daily in a company 50km far from home. The stressful job plus the stress of travels, I can say that I don't know what "Relax" is anymore. Even if I try to spend the weekend on bed or going out with friends I can't relax.
Dry eye made me more stressed and nervous because I don't want to lose the job and I also want to be able to read books, play videogames and watch tv series.
Also, I did all kind of exams, all negative! I saw 5 ophtamologists. I did a CT and a magnetic resonance, all negative.

So what is your current status? Have your symptoms resolved themselves, or do you still have dry eye? And when you saw eye doctors, what tests did you do and what were the results?

So, I agree with you. It think is related to stress & anxiety.

I'm not sure about anxiety CAUSING dry eye. Certainly for me, anxiety gave me body pain, but for me computers caused my dry eye.

Now are you able to read a book for more than 30 minutes without feeling dry eye symptoms?

I'm not limited to any task or any length of time. However, I still have pretty bad dry eye and shouldn't be spending all day on the computer. Only my pain is gone.

[pythonidler]

pythonidler

Hey,

I have been reading some of your previous posts regarding PRP injections into the lacrimal gland. I understand you had a negative experience with this ?

May I ask did you ever recover from your negative experience ?

I was debating getting this done. What are your thoughts ? Was their any improvement at all?

It's a really bad idea. For me, it increased my ocular inflammation and I started feeling grittiness for the first time in years (since taking serum tears). While I can't say anyone else on the board had this specific experience, I don't think any of them really improved because of the injections.

Those that did improve with that doctor probably also had meibomian gland probing done, which unlike the PRP injections, has been shown to help patients. I personally had probing done in 2016 and felt an improvement about a week and a half after.

[Fenix]

So what is your current status? Have your symptoms resolved themselves, or do you still have dry eye? And when you saw eye doctors, what tests did you do and what were the results?

At the moment I can still work 8 hours a day, suffering a bit and sacrificing my free time trying to rest my eyes. I don't see tv anymore, I avoid movies (too long for my eyes), videogames, and books (books increase symptoms in less than 20 minutes). The eye doctors did the schirmer test (results from 0-1mm min to 5mm max) and nothing more. They gave me all kind of eye drops but only anti allergy drops helped a little (2 of 5 doctors saw enlarged microfollicles in my conjunctiva, a sort of chronic allergic reaction) but dry eye is still here.
I'm trying to better symptoms with a very clean mediterranean diet, and going to the gym.

I'm not limited to any task or any length of time. However, I still have pretty bad dry eye and shouldn't be spending all day on the computer. Only my pain is gone.

I'm surprised that you can do any task for any lenght of time. If I stress my eyes, the next day I will suffer for sure at work, until I rest my eyes during the weekend.

[Guest]

At the moment I can still work 8 hours a day, suffering a bit and sacrificing my free time trying to rest my eyes. I don't see tv anymore, I avoid movies (too long for my eyes), videogames, and books (books increase symptoms in less than 20 minutes). The eye doctors did the schirmer test (results from 0-1mm min to 5mm max) and nothing more. They gave me all kind of eye drops but only anti allergy drops helped a little (2 of 5 doctors saw enlarged microfollicles in my conjunctiva, a sort of chronic allergic reaction) but dry eye is still here.
I'm trying to better symptoms with a very clean mediterranean diet, and going to the gym.


I'm surprised that you can do any task for any lenght of time. If I stress my eyes, the next day I will suffer for sure at work, until I rest my eyes during the weekend.

If your conjunctiva is diseased, you may appear to have dry eye, but that may not actually be the case. It could be that, due to the reaction on the lid, it can’t draw the tears into that upper portion of your eye. The inflammation from the lid will cause a reduction in tears, but if you treat the inflammation and lid disease, you should have tears flowing again. It’s all speculation, I don’t know your specific case. But I think getting that reaction on the eyelid under control would be a good thing for you.

[semari]

This post is an update to the last post I made on this forum in June 2018, explaining why I was quitting the forum. It is, believe

The lesson here is that there are other things besides your eyes which cause pain. Multiple neurologists and mental health professionals confirmed to me that both depression and anxiety can exacerbate pain. If you’re highly depressed or anxious, seek help. Not just for your mental health (which is hugely important and underrated, IMO), but potentially for pain as well.

@Pythonidler

yes I agree on this. Have been diagnosed with c-Ptsd, OCD due to long-term childhood abuse.
My eyes got significantly better after years of therapy, diet changes and excercise... and still a process.

Wishing you well..thanks for writing this down.