Severe eye pain and visual disturbances no one can diagnose

@aaaronh819 Welcome. I just found your post. Did anyone think your vision problems could be related to migraine headaches? Migraines do cause vision disturbances and they can be caused by alignment problems in your neck. A physical therapist can help if it is a physical problem. Since you mentioned one sided headaches, that can be caused by a muscle problem in your neck that might change the alignment of the your vertebrae and the way the skull sits at the top of the spine, and that can also affect circulation which happens with migraines. Muscle spasms in the neck can also change the alignment of the jaw and cause ear pain and pressure. I'm not quite sure what you are describing when you say that you are seeing your pulse in your vision, but it sounds like a lot of pressure causing pain. Your skull also has joints that can be skewed and maybe this could be putting pressure on your eyes? The optic nerves are at the base of the skull inside. A physical therapist who does cranial work could treat skull joint alignment. Having floaters is kind of normal and seems to get worse with age (in my experience).

Has anyone considered a physical problem with your neck and spine? I've had spine problems with a bad disc in my neck that I had surgery for at Mayo, and I have thoracic outlet syndrome. TOS gives me one sided headaches because my neck is tighter on one side. Physical therapy helps me a lot with that. Here is a link I found that describes migraines as related to neck alignment issues. https://mskneurology.com/treating-migraine-headaches-addressing-atlas-thoracic-outlet/

I don't have migraines myself, but I have had lots of headaches, and my therapist has adjusted my cranial joints. I am still working in physical therapy myself for the TOS and keeping my neck in proper alignment. In your workup, did they also do imaging of your brain and cervical spine and rule anything out as contributing factors? Have you had an injury to your neck that might be contributing to the problem? Did a neurologist see you? These are just some thoughts. If you can come to Mayo, it is a great place to get another opinion, and they understand thoracic outlet syndrome. I think one sided headaches are part of TOS because it's usually worse on one side. I don't know if you could have that, but most doctors miss it and don't understand it. My PT does treat people with migraines. (this is not her website in the link on migraines). If you do have a spinal alignment/neck issue, a physical therapist would need to know if there was any spine instability before treating you as it may not be safe if you had instability. Here is some Mayo information on Thoracic Outlet Syndrome.
https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988

@aaronh819 I just found this post today on facebook from the physical therapist from the link I posted for you about migraines and vision problems. If you go to the facebook post link, there are MRI scans of compression of the jugular vein. This is detailed information for educational purposes by a physical therapist.

(**Comment edited* The Training and Rehabilitation facebook page no longer exists because they have changed their name to https://www.facebook.com/mskneurology1 and their new website is https://mskneurology.com/. This quoted text below was from the old facebook page under the old name. **)

Here is the text:

"35-year-old nurse visits my clinic after soon 8 years of chronic pain and disability. The main problem is severe, chronic vertigo, and blurred vision. She suffered sudden syncope after performing CPR (on a patient) in her ward, i.e. during work, and was never the same after that. Had cerebral MRI which was "normal", ECG had slight findings, but not enough to be significant. Ophthalmologist claims the eyes are normal. Two months after this incidence she was unable to keep working, as she literally had to hold onto the walls when walking in the hallways of her hospital ward, due to persistent vertigo. Loading of the arms quickly exacerbate the symptoms to the degree of debilitation. Also has a history of whiplash in 2003, chronic neck pain and frequent migraines prior to this incidence.

Examination of her MRI, not shockingly, reveals obstruction of the bilateral internal jugular veins. There is slight concavity of the pituitary gland, and oval appearance of the eyes. Further, there is a significant dilation of the optic nerve sheaths bilaterally, but most pronounced on her worst side. A systematic review and meta-analysis shows that optic nerve sheath distention (ONSD) above 5,7mm has 80% specificity for CSF pressures above 20mm Hg (26cm h2o) (Geeraerts 2008). Thus, there are many indications of intracranial hypertension.

Ultrasound: I was able to demonstrate papilledema bilaterally as well as high ONSD also here (images aren't the best). Further, only 380ml/min total venous drainage via the internal jugular, which is less than normal (550-900ml/min - Schreiber 1985), and consistent with the obstruction demonstrable on MRI. There was only 35ml/min on the left side, consistent with severe obstruction (Özen 2014), and intracranial hypertension. There were also blunted systolic pressures in the brachial arteries.

This patient, unfortunately, has lots of problems. Craniovascular hypertension explains her chronic dizziness, migraine, fatigue and ocular pain. Extended upper cervical postures may cause obstruction of the IJVs (Seoane 1999), and we are now working on changing this. She also has thoracic outlet syndrome (blunted brachial systolic pressures, positive Morley's test, pronounced weakness of the arm), which we have begun treating as well. This patient now has a lot of hard work ahead of her, but I think that we will be able to improve the situation, as no permanent damage seems to be inflicted."

No one has ever mentioned anything about my neck or anything. They have mentioned migraines but said it would not cause the visual problems constantly. Before all this started, my neck would lock up at times, so bad it was all I could do to even get out of bed. Could neck problems cause severe eye pain and visual disturbances like this? When I say severe it literally is at times like someone is burning my eyes with a lighter. And the pain and visual disturbances continue to grow worse. I never even thought to mention this to the many doctors I’ve saw I didn’t know your neck could affect your vision and eyes or I would have

@aaronh819, Hi and Welcome to Connect. I have a vision problems but nothing similar to what you have described.
In response to your statement about personal information: On Connect it is okay to share your symptoms as long as you are comfortable doing so, keeping in mind that this is a public forum. We do not allow personal information like phone, email etc. to be posted publicly.
I am happy to see that you have already received some information that might prove to be helpful in putting a new focus on a possible diagnosis. I wish you well.
Have your doctors planned any kind of follow up with you?

Lost on what to do. Was working on going to John Hopkins but I’m Praying it won’t come down to that.

aaron, I am in total support for getting a second opinion. This includes talking with your doctor about your new information, as well as follow thru with your John Hopkins plans.
I do have a question(s) for you - You mentioned University of Louisville -(good place, I've been there for other reasons)- Is this the reason you were admitted there? Was there any follow-up scheduled? Have the inpatient/out patient doctors compared the notes regarding any other medical conditions that might be involved?
You are young, and as a mother, I want you to be assured that it is OK to ask questions and to seek 2nd and even 3rd opinions. You are the one who will benefit and you must be proactive and advocate for yourself. You do not need to do it alone, though - Is there a friend or family member who can support you and be with you as you go forward.
I am here, as are others to support you and to be available anytime.
What are your thoughts about this?

I told them I was getting worse it seemed weekly at first the neuro opthalmologist said come back if it gets any worse and I told him that and he scheduled me for three months. My neurologist had found something that was rare and he told me to tell the neuro opthalmologist about it and his reply was I’ve never heard of it. Which doesn’t mean it doesn’t exist. Treated me pretty much like I had a hangnail or something. The neurologists in the hospital were nice and compassionate just did not know what to do. I’m Praying the lady that mentioned about my neck could be on to something I’ve had neck problems many times before this all started and called a chiropractor and physical therapist and they said it is possible for your neck to cause problems like this. I just never would have dreamed but I’m not very smart medically and everything seemed like it was neurological or coming from my head. Which I guess is possible since all your nerves travel through your spine in your central nervous system

I can relate to the pain and the visual problems (but my visual problems are not where near as bad as yours). I had an iridotomy done on both eyes on July 24 this year. I had no problems with the left eye. But my right eye is an entire different story. Starting from the first laser, the pain was unbearable and I suddenly endured eye pain and headaches on my right side only 10/10. I had severe pain on my eyebrow bone and the inside corner next to my nose. I also had very bad light issues. All 3 issues still remain today. The light issues are quite a bit better now but not gone (it's like the vertical light glare in a window when I blink). And the right eye pain and headaches on right side have dropped from a 10/10 to anywhere from a 3/10 to an 8/10. My pain and headaches trigger to the high levels when I'm outside even though I wear sunglasses. Or even when I'm stressed, do light yard work or light house work. My family doctor believes me and is trying to find a very good ophthalmologist to get a second opinion on the eye pain and headaches.

Also, I'm curious aaronh819 what your neurologist had found that was rare.

I had severe eye pain, like a hot poker mainly left eye, sometimes both. Saw an ophthalmologist neurologist. He said it wasn't from the optic neuritis I had once, thought it might be from my ms. It stopped after a few years, had to lie in a dark quiet room, holding my eye.