I have constant pain behind both eyes, can you provide any suggestions or support?

[jamminsport]

Bio: Hello, I'm Jim. I'm 28 and I live near Tampa, Florida. I'm seeking help with regards to eye pain. I've had constant pain behind both eyes for as long as I can remember; 8+ years. I cannot cope well with life like this anymore :( I'd appreciate your time and help more than you can imagine!

Pain (scale 1-10): The pain level behind both eyes is 3-4 on bad days and .5 to 1 on good days. I feel constant pressure behind both of my eyes (feels like it's on the top/behind my eye lids). The feeling is like a light to medium pinching sensation (like if you pinch your skin before it hurts too much) and is 24/7. The pain is the worst in the morning when waking up and is less at night.

Contributing Factors:
SLEEP (main): A good night's sleep will determine the day's pain level. Sleep less than 9 hours will result in a pain level of 3-4 and the entire day is hard to grind through.
LIGHT: Sensitive to light; must wear sunglasses outside (even if cloudy) and sometimes inside (hockey game/bright lights and at casino playing slot machines).
COMPUTER: Cannot be on the computer more than 15 minutes in the morning or afternoons.
READING: Cannot be on the computer more than 15 minutes in the morning or afternoons.

Remedies: A well night's sleep is most important. Used sleep medication in past, but do not want to become addicted (do not want pain killers either). The follow helps about half the pain: Advil, caffeine, high fat/high carb foods, putting coco butter on the top of my eyelids lightly, and/or a good nap.

Tried: Ophthalmologist(s) and had orbital cat scan. Eyes are healthy/no glaucoma. Tried various eye drops (some prescribed) and sinus techniques, all did not help. I gave up seeking more specialists because I could not afford more doctors visits (I do not have good health insurance); so I decided to accept the pain and cope with it. I remain on a good diet/exercise regimen and my vision is not rapidly deteriorating or had any vision loss.

Cannot: Travel, do anything in the mornings, use my computer IT degree (be on the computer for hours a day), or read much at a time. The pain effects my mood and morale :(

Want: I would love any suggestions/support that you can provide! I plan on paying out of pocket to speak to a neuro-ophthalmologist about my issue. After Googling, if I had to guess it's some type of nerve damage, but behind both eyes... I'm not sure how both are the same pain level. Also, I would think the pain level would be least in the mornings (after sleeping and having eyes closed), but, on the contrary, the pain level is least at night and worst in the mornings.

I would love to travel with my new girlfriend, but sleep is so paramount (to my pain level), that I must use my own bed in my blacked-out/cool room. My life revolves around me coping with this pain, and I wish I could live a normal life - wake up early, work on the computer, and just live life to the fullest!

Thank you for reading and God bless :)
-Jim

[John C Hagan III, MD, FACS, FAAO]

Rheumatoid arthritis,  scleroderma,  mixed connective tissue disorders,  Polyarteritis nodosa,   these fortunately are rather rare.

[jamminsport]

Hello again Dr. Hagan,

My MRI and bloodwork are all unremarkable with no issues to be found. Someone in another forum recommended 'triptan' as my issue may be a chronic migraine and not a variation of an autoimmune disease. I still plan on seeing the neuro-ophtha on July 6th. Any other suggestions? Thankful for your help!

-Jim

[John C Hagan III, MD, FACS, FAAO]

No other useful thoughts.   Hope Neuro-ophthal can shed some light.  Sometimes its better to have some uncertainty than to know for certain its some horribly serious disease.  

[John C Hagan III, MD, FACS, FAAO]

Probably not   hyperthyroidism (Grave's Disease) can cause bad eye problems but it should have shown up as forward projection of the eyes (exophthalmos) and enlarged extra ocular muscles on  Head/Orbital CT.  So should have 'orbital psuedotumore"   However a basic thyroid blood work is certainly indicated.

[jamminsport]

Thank you Dr. Hagan,

I'll be getting blood-work and an MRI done this week. Do you know of any other autoimmune diseases that affect the eyes and throat?

Thanks,
-Jim

[jamminsport]

Thank you Dr. Hagan,

I really appreciate your response. Great, I'm in the process of scheduling to see a neuro-ophthalmologist. And, I'll meanwhile I'll do research on facial pain syndromes.

-Jim

FYI only: Previous orbital CT results: https://preview.ibb.co/h7umfd/negative.png

[John C Hagan III, MD, FACS, FAAO]

I'm sure you will need a MRI.  What that test ruled out was "orbital pseudo-tumor"

[jamminsport]

Thank you Dr. Hagan,

I just googled and found "MRI provides better imaging of the optic nerve, orbital fat, and extraocular muscle, but CT scans provide better views of the bony architecture of the orbit. MRI with STIR sequences also allows for identification of active inflammation within the orbital tissues. MRI axial section of the orbit."

Thankful for this input. Didn't know!

-Jim

[jamminsport]

Dr. Hagan,

I do have one more thing to include. In another post of mine, I did have someone ask about my thyroid, and here was my response:

"I have not tested my thyroid, but I just googled it and it's very interesting because I do have throat pain not in the morning weirdly, but at nighttime (the feeling if I was to push out my adam's apple a little bit but permanently). I did see a general practitioner for that, and they ruled out depression, so I didn't pursue it further.." Do you think this issue could be related?

[John C Hagan III, MD, FACS, FAAO]

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[John C Hagan III, MD, FACS, FAAO]

I do have some observations and suggestions.  First if it were something ultra-serious that threatened your sight or life it should have killed or blinded you which it hasn't so not at all likely to do that.  Your plan to see neuro-ophthalmologist is a great place to 'go next' to benefit maximially you will need to take copies of all your old doctor exams and likely the report AND the original of the head CT with orbits.   There are a number of facial pain syndromes that might cause your problem.  They are difficult to diagnose and treat but it is the area that neuro-ophthalmologists live.  Depending on what the Neuro-oph says you might need to see a neurologist, sometimes botox injections help, sometimes pain clinics and biofeedback work.  Since your insurance is not good I'm repeating this because important. Get together all your doctor reports, tests, the CT report AND copies (Disk)  whomever did the CT will normally furnish report and CD copy at no charge.