A Pained Life: I Know You Can Read

A Pained Life: I Know You Can Read

My trigeminal neuralgia is now mainly eye usage and eye movement pain. It is what keeps me disabled.

Any consistent eye usage, such as reading for more then 10 – 20 minutes causes horrendous pain. It can take hours to resolve, and does so only by my lying still and trying not to use my eyes at all.

My father refused to accept that I could not work. “I have seen you read, so I know you can,” he told me. His meaning was clear.

You can do it anytime you want for as long as you want, you just don’t want to.

Little_Shop_of_Horrors_NicholsonI do want to. My inability to do so is not a decision I made, or an excuse for laziness or malingering. How do you explain that, especially to someone who does not want to believe?

So many of us have had this experience.

I saw you grocery shop so I know you can.

You can plug in almost any activity. It all boils down to the same thing. You did it then, so you can do it now.

It is an issue of quantity. How do you quantify the pain and what we can and cannot do?

There are certain things that are constant: A knee that doesn’t bend is always not going to bend. A constant that interferes with your life and activities will always interfere. It is the pain that lacks constancy that is the problem.

I am a perfect example. People often suggest that I set a timer when I am using the computer or doing other eye involved work. As soon as it dings I am to stop - no matter what I am doing.

Some days that works. Other days either the eye is doing very well at the end of the time frame or the pain has gone beyond tolerable way before the time is up.

It is not always time that is the enemy.

I try to clean out my email inbox, often a daunting task. Some days it is easy. Other days emptying out the same amount of mail triggers the pain quickly. Why? What is the difference?

It comes down to deciding whether I read what has been sent or deleting most of it. Deleting for 20 minutes is nothing, because I have not really used my eye. But reading emails for 20 minutes is a mountain of time, a monumental struggle to get to the last of the messages.

Other chronic pain disorders have the same issue.

Yesterday the pain was not as bad and I could clean the house, go out with friends.

Today it is a 9 or 10 on the pain scale. It is all I can do to get out of a chair or make the bed.

It is very difficult to explain this to others. For most folks what they could do today they could do yesterday and they can do it tomorrow.

Pain has made us unlike most people. What we can do today is the success. Being able to do it tomorrow is the hope.

Carol Levy

Carol Levy

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol was accredited to the United Nations Convention on the Rights of Persons with Disabilities, where she helped get chronic pain recognized as a disease.

Carol is the founder of the Facebook support group “Women in Pain Awareness”. Her blog “The Pained Life” can be found here.

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represents the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

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Authored by: Carol Levy, Columnist

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Mark S Barletta

Everyone has a tip for you but no one wants to be you.
I wonder why that is, I wish you many pain free days as possible . And quick recoveries from the flare ups.
I will push a little further down the road along side you ,together maybe we can find the way to less severe pain each passing day.

Mark S. B.

There are trigger points or myofascial release points in the face, jaw, side of the head and neck that can turn off the pain.
Magnesium, facial, jaw, scalp neck and shoulder massage can to the same if the stressed in the muscles is not too dense.

In some venues of CAMs users they may even use needles around the eyeball proper to turn off the culprit muscles and thus the pain. Thanks to the work of Alston C. Lundgren, MD.


Although I was not diagnosed with Trigeminal Neuralgia, I also get eye pain. Reading, typing, editing photos, drawing, playing video games and watching TV all cause me discomfort. Sometimes the pain will wake me up from sleep because I moved my eyes too much during a dream.I know I will never get my life back, but It would be great if I could reliably type into a computer.

Would it be possible to input text into a word processing program without staring at a screen? Blind people use computers. How do they type? Could their solution be adapted to fit the needs of people like Carol and I?

Catherine Nichols Pogorzelski

I also had this happen, just the other night, I drove to Staples to write to 5 docs with faxes going of my2 page letter to all 5, but the documents just going to one. Trying toboth compose and handwrite the letter, left me dazed and confused with pain that left me unable to concentrate, ( I also have pneumonia right now, so far untreated since chest xray on 04/23/14, because my pulmonologist is not trusting what results the hospital found and would rather trust what Labcorp did NOT find on cultures!)

I had to call hubby to come get me luckily my son was able to drop him off and he drove us home, where I went right to bed, sleeping til next am!

Kevin McQueeney

The statements I could relate to the most:
“Yesterday the pain was not as bad and I could clean the house, go out with friends.
Today it is a 9 or 10 on the pain scale. It is all I can do to get out of a chair or make the bed.
It is very difficult to explain this to others. For most folks what they could do today they could do yesterday and they can do it tomorrow.”
Thanks for sharing your thoughts.

Catherine Nichols Pogorzelski

Have you ever had any imaging for Eage’s syndrome/stylalgia? I recently had my left side styloid removed (with some complications for swallowing as I also have Gadolinum & systemic sclerosis in blood but no definitive diagnosis, as YET but I refuse to believe they can’t figure me out). Testing positive for ceratin things shows there is SOETHING happening (I have AI issues from low IgG to Systemic Sclerosis to Lyme, b.Burgdorferi and Babesia to repetitive bouts of Klebsiella Pneumonia) A CT (there are many types) or panorax xray may give clues to see if the styloid process is elongated and giving you these issues. Everyone is different in anatomy, but wondering if this may be PART of your issues. I had been to many doctors, one telling me VIA phone call, without having seen me in PERSON, that he did NTO think I had the condition (hemifacial spasm) albeit mine were mild-LOOKING, but the pain went from my head to my lumbar area, ALL GONE AFTER SURGERY!!!I I also have Sjogren’s lost all my teeth at 35, DEspite great dental care and wondering if the styloid may be THE issue with those suffering from Sjogren’s, as it blocks blood flow to jaw and even my carotids were affected both moderately and bilaterally. I am NOT looking forward to having the right sided surgery, as I am still suffering post-op swallowing issues from intubation, plus having the muscles in neck being worked on that need healing. I had my ENT use older imaging, I’d had dome in the past, rather than ordering anything new, considering I have HIGH amounts of GADOLINIUM in me. He agreed that the styloids both “looked long” although they did not FEEL like it to his trained hands; I opted for him using the imaging to trump the hands-on diagnosis*, AND I WAS RIGHT. Even when he tried to break off the styloid with his fingers during my surgery it did not break off so easily , as with other patients.Heneeded to use tools to break it off. *Akin to “feeling for lump of cancer” versus using mammogram/thermogram. Godo luck and let me know if this might be one of your issues. https://en.wikipedia.org/wiki/Eagle_syndrome https://www.practical-patient-care.com/features/featurelingering-effects-gadolinium-based-contrast-agents-4187508/ One thing for sure I will NEVER have another MRI with contrast as I have HIGH amounts of GADOLINIUM contrast in my blood and even HIGHER i urine, signifying my body in the last 6 years has held onto GADOLINIUM ,leeching out from my bones, so I caution EVERYONE even those with NORMAL KIDNEY FUNDTION NOT to have any done, there are consequences to allowing certain drugs iNTO our bodies. A recent toxicologist Lews Nelson at Bellevue in NY City told me, “you need to come to grips with what is happening to you, I can’t say whtehr you do or do nto ahve these things happening but you will NEVER PROVE IT IS FROM GADOLINIUM!” That tells me if you have HAD any MRI’s doctors aare never going to confirm they have… Read more »