Severe undiagnosed illness

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have been having such a terrible time for so long with eye pain and terrible visual disturbances. Been to multiple specialists had an mri ct all with no avail. The last few months it’s became debilitating progressing so fast I have no idea what to do. Having to lay in bed with a wet cloth on my eyes for hours upon hours because of the pain. My eyes have became red also all the time. I’ll try and describe the visual problems or at least what I can think of there’s so much. Terrible visual afterimages constantly seeing everything you look at repeatedly, seeing clear outlines of everything you look at whenever it’s bright, tons of floaters, white dots everywhere whenever looking at the sky or anything bright, flashes of light all the time from white to blue or black. Even when I close my eyes I always see blue light even when I’m a dark room with my eyes closed for hours I can’t ever get rid of this.  I never heard of anyone seeing blue like this all the time with eyes closed. Also have an arc of light in the side of my right eye almost all the time, extremely bad light sensitivity, if I see any glare of light or head or taillights or anything it gets burned into my eyes for minutes. I cannot find help it is progressing so fast I’m beyond terrified. I can even look at my phone or anything and look around and see a black outline of whatever I was looking at for minutes. There is so much more going on with my vision and head pressure and so much more I could never list it all. I’ve also been having strange pains and feelings in my head muscle twitches all the time headaches which I don’t even notice compared to the eye pain and so so much more. If anyone has experienced anything like this please help me. I have lost all faith in the medical field just keep getting put off months at a time. I Pray more than anything for healing. Please anyone that can help please do so. I’m beyond scared to death for my life. Thank you for any help

1 like, 6 replies

6 Replies

  • Posted

    Is there temple pain as well? If so maybe check out temporal arteritis. Oh I pray you find some answers. Don't stop trying 2 get help..research all symptoms and keep trying..sad that we as patients have to so the researching, if medical field dnt understand symptoms, they write us off..will pray 4 u answers soon. ..

    • Posted

      No temple pain just agonizing eye pain and visual disturbances that keep getting worse. It’s gotten beyond unbearable I’m lost for your words. Just Praying from the absolute bottom of my heart for a miracle to start today please Lord even one sign today I’m healing
  • Posted

    I’ve had the exact symptoms but not to that degree as you’ve described. I read that several specialists could not find a diagnosis or solution but have you experimented with counter-measures or ways to prevent the symptoms? A combination of pain medication, ice, heat, vitamin supplements and avoiding triggers is what I use to prevent pain and visual disturbances. I must wear prescription sunglasses and anti-blue light sunglasses on top of those when driving or walking outside, and while using computers or my phone. I also place screen filters on my phone and computer screen at nighttime because that is when my symptoms become worse. Additionally, many devices have the option of night-mode and to “reduce white point and screen brightness” that you could test out to see what works for you. I constantly see after-images too, for about 12 years. That wasn’t solved until two years ago when I found out that I had ocular migraines caused by stress. I use NSAIDS to manage the pain, although overtime my body has accumulated a tolerance for certain medications thus forcing me to use higher doses restrictively when the pain is severe. These are just simple methods, but I hope whatever pain you’re going through will end soon.
    • Posted

      I’ve tried everything imaginable. They thought at first it could be the ocular migraines but they said it wouldn’t be twenty four seven.  It’s taken my whole life from me can’t even go outside for very long without pain that is absolutely unbearable like someone is taking razor blades to your eyes. It is so discouraging not to mention the visual problems only getting worse also. What I would give or do for this all to just go away. I’ve googled for months on end when I can stand it long enough to try and see if anyone has experienced this in this kind of matter and can’t find an answer to anything. Beyond desperate and scared to death. 
    • Posted

      So do you have photophobia? Is that the main issue is pain in eyes when susepted to light?
    • Posted

      No the pain is all the time just even worse outside. And light is in my eyes even with them closed all the time. Terrible 

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