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will2

Neuro Pain in left eye

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It's been quite some time since I've last posted, many years in fact. I've usually just browsed the topics from time to time. These days years from post stroke, aging and being older has presented itself with many evolved difficulties stemming from the original surgery. I had a ruptured aneurysm in the left vertebral artery in 07' which left me with a subsequent stroke during the repair to stop the bleed. A topic on the front of one of your pages had me re-thinking my pain syndrome stemming from the post surgery. Mostly because the pain didn't really start initially but progressively got more intense a few years post stroke. Unfortunately for me, the pain affected my left eye. In the course of trying to diagnose my condition because it started a few years after the stroke, many ophthalmologist trying to find and remedy the pain had me try things like silicone implants in the tear duct, courses of many neuro type drugs, Restasis, etc. Finally my ophthalmologist sent me to his University Professor from the University of Miami who was one of the leading neuro-ophthalmologist at the Bask and Palmer Center here in Miami. After a few visits and diagnosis he told me that "You've often heard the saying that it's all in your head" in this case he said it is in fact. Just damage from the aneurysm and stroke and relegated me to a pain management clinic because the eye was in fact, perfectly healthy. Just brain damage and signals triggering the pain.

 

At this point the pain was, in my best description, as though my eye was being burned from the inside out. I started the opioid treatments around the clock for management and/or relief, oxy's, morphine sulphates, oxymorphones, etc. After several years my life was in  such a decline from taking the opioids, liking it to stealing my soul or life force out of me, I abandoned treatment and went cold turkey. What God awful withdrawals. 

 

I've been opioid free now several years but still deal with intense pain. My only escape is sleep, or I keep a plastic Coke bottle filled with water in the refrigerator to hold directly on the eye to distract the pain temporary. Or, a very hot shower where I just let the water pour down on my face and closed eye to get minor relief. Seeing how the eye is perfectly healthy, and unfortunately no surgery that can repair this non-existent damage, I'm just praying daily for some odd miracle to remedy my situation. I'm no longer trying any Cymbalta, Lyrica, Neurotin, etc drugs or opioids, so I just seek alternative paths. Additionally, I've tried acupuncture also.

 

I'm still hunting. But share in the frustrations of so many other stroke survivors that deal with neurologic pain. I hear you..

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I don't share all of you intense pain but with my nerve damage with my eye, I often get a pin point extreme pain.. only briefly  I do hope you finally are able to find solace 

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2 hours ago, ksmith said:

I don't share all of you intense pain but with my nerve damage with my eye, I often get a pin point extreme pain.. only briefly  I do hope you finally are able to find solace 

Thank you Kelli. I'm inclined to stay on the path in search of some miracle remedy and/or medication. 

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Oh, and btw...I don't know exactly in my profile to the left it has "female" under Stroke Survivor in the menu. I assure you that the last time I checked, I was still male as listed in my "Gender" in the menu. It's an enigma:shocked:

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Will, What an incredible story,  you have my sympathy! I  can appreciate the expert telling you it is all in the brain because we all know how this can happen. Many an amputee has suffered from pain or unbearable itching in a non-existent limb. Ever since a small child I have had the problem that I cannot look at barbed wire or bayonets because of pain from my eyeballs. As a youngster I determined to overcome it by deliberately handling knives and in fact became a very adept knife thrower. The fear still exists today even though I'm in my nintyth  year if I am tired or have a headache, and programs on the TV showing sharp objects make me close my eyes till the scene is ended. It is not the terror it used to be but is still there.

My wife has a fear of heights. I have a photograph she took of a ravine when we were driving over a bridge, I had to bully her to take it and it is a marvelous close-up of the car window and driving mirror. Confronted with a picture of the edge of a cliff and she actually has pains in her calf muscles. She too, went to a lot of trouble and pain to confront the problem and it has reduced somewhat but that famous photograph of all the construction workers taking their lunchbreak on a steel girder over the Manhattan skyline can have her terrified!

 

Have you looked at Hypnotism for an answer? 

 

Deigh

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Will, Good luck on your quest to find non-opioid pain killers. The answer has to be out there somewhere. Best, Becky

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Deigh, actually I did want to try hypnotism and scheduled an appointment. My wife and I both attended and after the short meeting she was dead set against it. She never really disclosed her true reluctance imo, but I was thinking that she was apprehensive about post hypnotic suggestions and disclosing info that may be personal. She's an extremely private person and often suspicious of intent. She is Russian and was there until I brought her to the states in 02'. Were both in our mid-sixties now, she's still the same...some things or conditioning may never change in her case. 

 

My thinking is that if hypnotism worked for folks with fears, desensitization, and things like cigarette smoking I could also be a candidate. Oh well. 

 

Thank you Becky, I've been very open to many different alternative applications, to include CBD oils. I'm still in the hunt and will continue to do so. The answer is out there, I have the faith and determination and a strong prayer life.

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Posted (edited)

Will, I feel that hypnotism could be very useful to your condition so am going to suggest you study it yourself. There are many books on the subject and Googling would find them for you. It is a pity the practice ended up on the stage because it has some excellent abilities but using it as an entertainment undermined its value and has brought it into unjustified disrepute.

I have used it myself to take headaches from small children by laying a hand on their forehead and telling them the pain has gone into my hand. I would do it seriously and then show them me shaking the pain away from my fingers. It worked every time!

Deigh

Edited by Deigh

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There has to be a way to do it!  The pain is something your brain is "making up" because of a bad connection or similar With all the advances in understanding brain plasticity there must be a way to rewire it. Please understand I'm not saying it's not "real" and extremely debilitating. Best of luck with your search and I do hope you find something that helps.  I'd start the research here https://www.noigroup.com/

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I'll no doubt stay in the hunt, the med or alternative approach is definitely out there. I believe that. Thanks for all the interesting and useful suggestions, I appreciate it.

 

Initially, I started this thread because I read on the from page of one of these pages about how some of the issues and symptoms for some folks weren't starting right after their strokes, they displayed themselves much further afterwards. I really never considered this happening. With my eye, the symptoms didn't start until a year or so later and my ophthalmologist and I really didn't make the connection, we assumed it was just a dry eye problem which of course went south to the pain route.

 

In the scheme of things, along with the usual stroke deficits I'd place the pain at a 6 or 7 in importance. These days I'm more focused on strength and balance issues, plus the left side numbness drives my crazy now and again. It's been well over a decade that I could tell the difference between an egg or a toothbrush in my left hand. I'm not complaining, it's business as usual these days for stroke deficits, although I do get more tired more often these days. It's good to just be able to express these changes to others who understand and experience the same issues. Thank you.

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>> that famous photograph of all the construction workers taking their lunchbreak on a steel girder over the Manhattan skyline can have her terrified!

 

I can relate to that!  I used to climb quite seriously when I was a _lot_ younger.  Never felt uneasy while climbing, even on routes that other climbers had died on, but would get the heebie-jeebies looking at that very same photo.  I still do.

 

Strange how the mind works.

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On 7/10/2019 at 7:25 AM, PaulNash said:

>> that famous photograph of all the construction workers taking their lunchbreak on a steel girder over the Manhattan skyline can have her terrified!

 

I can relate to that!  I used to climb quite seriously when I was a _lot_ younger.  Never felt uneasy while climbing, even on routes that other climbers had died on, but would get the heebie-jeebies looking at that very same photo.  I still do.

 

Strange how the mind works.

My previous job often required climbing extremely high Transmission towers to examine and/or replace or repair high voltage transmission switches in our Substations dept. Never a second thought just focused. These days I've taken a spill just stepping up on a step because my balance is terrible. Thats hard to shake and destroys my confidence to climb a small step ladder just to change a light bulb or something. I too am amazed by how many changes my mind has made post stroke.

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I've found that picture my wife took of the scenic ravine. I did suggest that She drove the car and I would take the picture. She refused saying she didn't want to drive over the bridge at all! Actually that would not have worked because she would have been right in the middle of the road to distance herself from the edge!

Deigh

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what a lovely view and I'm sure rather high 

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Will, did you damage your back in your job as a transmission tower technician?

 

A good friend of ours used to fix wind turbines, and it buggered his back.

 

I'm not saying that a bad back has anything to do with eye pain, but it is rather surprising what a bad back can be responsible for.

 

All the best with finding a solution. 

 

J x

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