1. < Headache & Migraine
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BVD and daily headache

Posted by jdp3 @jdp3, Sep 17 9:56am

I have binocular vision disorder which worsened again after a month long bout with severe migraine with aura. During that time I was severely photosensitive and also nearly blind from the auras that included genera blurriness, flashes, bright central light, and spots that persisted with eyes closed. The smallest light would trigger a level 10 headache 3x a day. It finally resolved but I still get daily afternoon headaches and dizziness despite wearing prism glasses for exophoria and convergence insufficiency. I see a neuro-optometrist. She feels limited in how to help. My headache specialist doesn’t want to talk about any connected systems not about headache types or causes. My naturopath and PT Ame’s physiatrist have helped with cervicogemic issues and my dentist with jaw tightness. Botox and AJOVY also seem to help but that’s limited. I feel like I’m missing a diagnosis and am terrified of having another month long bout. Frankly I fear stroke and permanent vision loss. Also the pain of course. Does anyone out there recognize similar symptoms and what was the diagnosis?

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Teresa, Volunteer Mentor | @hopeful33250 | Sep 18 5:56am

Hello @jdp3

I can understand your concern. You appear to have a lot of problems related to your vision. You seem to have a good medical team who are working with you. I'm sorry to hear that they cannot find any underlying cause for all of these vision-related problems.

While we wait for other members of Connect to respond to your post, here is some information I found about this disorder from the Cleveland Clinic website. Here is the link: https://my.clevelandclinic.org/health/diseases/binocular-vision-dysfunction-bvd

I would encourage you to read the article and see if this explanation explains the problems you are having. As I read the article, I see that there are numerous symptoms and causes.

Often, complex problems like this are best addressed at a research-oriented medical facility. Have you considered a second opinion at this type of health care institution? Mayo Clinic would be a good option for a second opinion (link to appointment information for any of Mayo's three locations, http://mayocl.in/1mtmR63). If an appointment at a Mayo facility is not possible, then a university medical school might be a good choice for a consultation. You will want to pick a medical institution that is known for treating vision problems.

Have you considered getting a second opinion, @jdp3?

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jdp3 | @jdp3 | Sep 18 8:47am
In reply to @hopeful33250 "Hello @jdp3 I can understand your concern. You appear to have a lot of problems related..." + (show)
Profile picture for Teresa, Volunteer Mentor @hopeful33250

Hello @jdp3

I can understand your concern. You appear to have a lot of problems related to your vision. You seem to have a good medical team who are working with you. I'm sorry to hear that they cannot find any underlying cause for all of these vision-related problems.

While we wait for other members of Connect to respond to your post, here is some information I found about this disorder from the Cleveland Clinic website. Here is the link: https://my.clevelandclinic.org/health/diseases/binocular-vision-dysfunction-bvd

I would encourage you to read the article and see if this explanation explains the problems you are having. As I read the article, I see that there are numerous symptoms and causes.

Often, complex problems like this are best addressed at a research-oriented medical facility. Have you considered a second opinion at this type of health care institution? Mayo Clinic would be a good option for a second opinion (link to appointment information for any of Mayo's three locations, http://mayocl.in/1mtmR63). If an appointment at a Mayo facility is not possible, then a university medical school might be a good choice for a consultation. You will want to pick a medical institution that is known for treating vision problems.

Have you considered getting a second opinion, @jdp3?

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Thank you. I read the article and it does align with my problem but the underlying cause is not clear nor is a treatment option . I ve tried to get in at local OHSU but it is nearly impossible to get in due to wait times and the need to be accepted as a patient by their selective process. I’d need a strong referral but not sure how to get one given the situation with multiple disconnected specialists.

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Teresa, Volunteer Mentor | @hopeful33250 | Sep 19 10:06am
In reply to @jdp3 "Thank you. I read the article and it does align with my problem but the underlying..." + (show)
Profile picture for jdp3 @jdp3

Thank you. I read the article and it does align with my problem but the underlying cause is not clear nor is a treatment option . I ve tried to get in at local OHSU but it is nearly impossible to get in due to wait times and the need to be accepted as a patient by their selective process. I’d need a strong referral but not sure how to get one given the situation with multiple disconnected specialists.

Jump to this post

Have you tried contacting your PCP to see if that person could help with a referral? Will you keep posting and let me know how you are doing?

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jdp3 | @jdp3 | Sep 19 2:19pm

My PCP says it’s a normal migraine with aura. He hasn’t really kept all my records from diverse specialists nor taken time to try to ID any type of pattern. I made an appointment to try to do so but it didn’t help. I’ve begun to take my own list of diagnoses (which include MS SFN and possible MCAS, hypermobility, and MPS, Tarlov cysts possible ankylosing spondylitis and lots of OA). I listed all the things next to names of doctors so that they don’t think I’m just a hypochondriac. I’m working full time so coordinating all this while trying to exercise use and sleep appropriately is very difficult. It’s even hard to know which condition to focus upon with my doctor appointments. Forums like this one help provide perspective by learning what has worked for others

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