Last reply 7 months ago
Constant Eye Pain Both Eyes

Hello everyone,

I have not been diagnosed with MS but I have read some of the symptoms and feel that your support could be helpful as to what steps I should take ๐Ÿ™‚ Here’s my post:

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 ๐Ÿ™ 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 ๐Ÿ™

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 ๐Ÿ™‚

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8 months ago

Hi @jamminsport and welcome.

I’m not a medical person, but from my perspective, this doesn’t sound like MS. MS symptoms are caused by physical damage to the nerves. And any damage to the optic nerves can be seen by looking into your eyes with one of those scopes they use.

It is unusual to experience symmetrical symptoms with MS too.

The following website may provide some areas that may be causing this problem:-

8 months ago

i agree with stumbler that this doesn’t seem characteristic or MS eye problems at all; so take that off your worry list.
As a migraine sufferer i know how debilitating some of your problems are and I’m not dismissing how difficult life is becoming.
In the absence of a medical diagnosis I recommend that you be kind to yourself, and perhaps even try meditation or something that gives you distraction and/or joy

8 months ago

Thank you so much for both of your responses and for helping with support. I think I am ruling out MS but I am very thankful and I’ll keep looking for answers <3


8 months ago

Hi @jamminsport. Sorry youโ€™ve been suffering for so long. Just wanted to say I think itโ€™s great that are so so aware of your own body and needs. By trial and error youโ€™ve discovered how to minimise the effects and give yourself a good quality of life through your sleep habits. Weโ€™re so lucky in the U.K. as we donโ€™t pay for medical care. But I think you would be wise to pay out of pocket to see an optho-neurologist, as you suggest. Just do your research and make sure you go to the best that your money can buy. Good luck and best wishes ๐Ÿ™‚

8 months ago

Thanks vixen,

I have a scheduled visit for July 6th for the neuro-optha. Really appreciate your help!

8 months ago

Hello everyone,

I do have one more thing to include. In another post, 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 my eye pain issue could be related? If so, any suggestions on what to do?

Thank you so much everyone!

7 months ago

Hi Jim,

I’m also reaching out and sharing my story, which is very similar to yours. Unfortunately, the short story is I don’t have anything happy to add. I’ve been dealing with eye pain for almost three years now. I can’t imagine dealing with this any longer. I’m still looking for answers. So far i’ve seen:
3-Opthalmologist- Retina specialist
4-Opthalmologist- Neuro specialist
5-ENT specialist
9-Gastroenterology (abd pain, left side also constant. more uncomfortable than pain)
10- handful of primary care physicians

I’ve tried three different hospital systems including Univ of Chicago, Advocate Medical Group, and Dupage Medical. I’m healthier than healthy. No one can explain the pain. My pain is also worse in the morning. I feel like i’m waking up from a coma and it takes me a while to get going. I also work in IT and it’s very frustrating. I’ve tried every eye drop brand and i’ve also been prescribed by neurologist different anti-depressants to treat as migraine but the side effects were horrible! I was hallucinating and having ugly nightmares. I hope that by sharing my story we can find a pattern or trigger. At this point I believe everyone thinks i’m making this up. I just want this to go away and get my life back.

I think the MRI ORBITS scan would have revealed any nerve damage so i’m not sure an optho-neurologist is your best bet. Find a retina specialist. Have you ever had any type of laser surgery? I had laser surgery in both eyes to fix retinal detachment before all of this started but other Ophthalmologists have confirmed the surgery was a success and there is no further damage.

7 months ago

Hey Jammin, i live about a half an hour south of tampa if you ever feel like meeting up just let me know. Ive been looking for some friends that have ms as well as me.

7 months ago

Are you being investigated for ms, I agree that your eye pain is not necessarily connected, but we are all so different, and even those diagnosed a long time ago who have had a myriad of symptoms no one knows for sure with some things and we forget we can have ‘ordinary’ illnesses and we have to be careful not to blame everything on the beast๐Ÿ˜

7 months ago

Thanks JamminJay,

The MRI orbits shows no damage as well. Someone in another forum recommended triptan as a medication as my problem might be chronic migraines and doesn’t seem to be MS.

Thanks Chazzo and grandma,

After doing more research I don’t think I have MS. But, really appreciate the outreach. My apologies, there are so many unknowns, and just helpful to seek out help from every angle or possibility.


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