Undiagnosed severe illness

I don’t even know if this is where I need to post. Neurologists have said migraines then tell me it wouldn’t cause these eye problems all the time. This has gotten so bad I am terrified for my life. I have been to so many specialists had mri ct which all came back good thank the Lord. Three weeks ago I was admitted into the university of Louisville and they still could not find out what is causing me these terrible problems. They believed me 100 % just did not have any answers. They done another mri which showed volume loss and I Pray with every ounce in me that doesn’t mean anything bad. my worst problems are severe debilitating eye pain the last few days it has been so bad I honestly don’t know how I’ve made it through and visual disturbances that are never ending.

The pain literally at times feels like someone is burning my eyes with a lighter, it is unreal I have never in my life dreamed someone could hurt so bad. along with the terrible visual disturbances. The worst vision problems are seeing objects repeatedly everything I look at, severe light sensitivity, flashes of light, always see light with my eyes closed, seeing moving white dots of light all the time, shadows and spots that aren’t there silhouettes of almost everything I look at bad floaters which I don’t hardly notice compared to the other bad things and so so much more. This has progressively gotten so much worse it’s almost unbearable. Also my eyes have became red almost all the time. The pain has made it impossible to live life normally I’ve dealt with this for over a year with it increasingly getting worse.I am honestly worried about my life. Have also been having one sided headaches for years now and seeing my heartbeat in my vision along with plugged ears all the time strange pains and feelings in my head, numbness in different parts of the body, random muscle twitches very often and so much more. I’m only 32 all I ever want is please God in Jesus name to have everything restored back to normal. If anyone can help please do so I am beyond desperate.


Community Answers
  • Nancy Harris Bonk moderator
    4 weeks ago

    Hi aaronh819,

    Hi aaronh819,

    What did the lumbar puncture reveal? Was the number high?

    I understand how frustrating this is. It’s been over 20 years of chronic pain for me, and it’s exhausting.

    You’ve mentioned you’ve seen neurologists, but I think it’s time to seek out the expertise of a true migraine expert. These are doctors who are board certified in headache, which is different than being certified in neurology. I’m currently seeing my 5th true expert, and am making progress. Here is information on how these doctors are different and how to find one; http://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/really-find-headache-specialist/.

    What do you think?
    Nancy

  • aaronh819 author
    4 weeks ago

    Everything came back normal. Someone had mentioned neck trouble could be causing all this I never dreamed it could. But before all this started I did have a lot of neck trouble like it getting locked up where it was all I could do to get out of bed and things. This has progressed so badly I have been beyond worried for my life. I have started chiropractic care and am going to go to physical therapy and do everything I can. I know I’ve had three mri and three ct scans and no one ever mentioned it but the chiropractor saw something wrong at the top I can’t even remember exactly what it was. I just Pray with every ounce of my being this truly is my answer to healing complete and whole back to normal specially this tormenting eye pain and vision trouble. I never even thought to mention my neck I never dreamed it could cause such problems. I just Pray this is the answer to healing complete and whole in every way with adjustment and physical therapy. I have suffered so badly there’s no words for it but I know God still heals I’ve never lost faith and I believe with every fiber of my being this is the answer to my healing. They have all told me migraines wouldn’t cause eye pain and vision trouble all the time so I don’t really know about that. Maybe you would actually know for sure?? Thank you so much for replying for any help and God bless

  • Nancy Harris Bonk moderator
    1 month ago

    Hi aaronh819,

    I’m so very sorry to hear you are having such a difficult time, that sounds very frustrating.

    I wonder if it’s time to have a lumbar puncture? Some of the symptoms you describe are associated with intercranial hypertension. I’m not saying that’s what you have, rather something to discuss with your doctor. We have more information on this here; https://migraine.com/blog/migraine-comorbidities-idiopathic-intracranial-hypertension/.

    I hope this helps, let me know what you think,
    Nancy

  • aaronh819 author
    1 month ago

    Already had a lumbar puncture. This is unreal to suffer this badly with no help. What I would give just for a glimpse of things getting better please Lord

  • Nancy Harris Bonk moderator
    4 weeks ago

    Hi aaronh819,

    What did the lumbar puncture reveal? Was the number high?

    I understand how frustrating this is. It’s been over 20 years of chronic pain for me, and it’s exhausting.

    You’ve mentioned you’ve seen neurologists, but I think it’s time to seek out the expertise of a true migraine expert. These are doctors who are board certified in headache, which is different than being certified in neurology. I’m currently seeing my 5th true expert, and am making progress. Here is information on how these doctors are different and how to find one; http://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/really-find-headache-specialist/.

    What do you think?
    Nancy

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