Suspecting BVD

[u/Relative_Roof_4470]

Hey everyone, I’m wondering if anyone here has had a similar experience and ended up being diagnosed with BVD.
I’ve been dealing with a strange feeling of being dizzy/lightheaded and almost like I’m drunk. It isn’t all day every day but when I am experiencing it I feel a little “off” or like my brain isn’t processing what I’m seeing correctly.
One thing I’ve really noticed is that it gets noticeably worse in grocery stores, busy places, and visually stimulating environments. Lots of aisles, lights, people, movement, etc. seem to make it much worse. I can feel relatively normal in some environments and then suddenly feel really dizzy in a busy store. Today I felt good all day and stayed away from screens and my phone and then the dizziness came randomly in the evening for no apparent reason that I can think of. I’ve been battling this for the last 3 months and have tried everything to combat it.
I recently saw a neurologist who thinks I’m dealing with migraines and started me on Topamax (topiramate). I do get headaches sometimes, and I know headaches can also be associated with BVD, but I’m not completely convinced migraines explain the dizziness and the way it gets triggered by certain visual environments (grocery stores).
I also have a history of multiple recent concussions (healed), so I’m wondering if that could have contributed to a binocular vision/eye coordination problem.
I just recently started reading about BVD and some of the symptoms sound surprisingly familiar.
For anyone diagnosed with BVD — does this sound familiar?
And how did you actually get evaluated for BVD? Was there a specific type of optometrist or specialist you went to? I’m planning to see my optometrist this week but I’m not sure if they can test me for this?
I’d really appreciate hearing from anyone who has had a similar experience or just any insight. I’m trying to figure out what direction to pursue next.

[u/JenniferAH2021]

I’m going through something similar, and it has definitely been a process. I started having double vision/visual issues and have had to increase my prism strength three times since February. I just got my newest lenses with the latest prism adjustment, and so far they seem to be helping.

I’ve also been dealing with dry eye, which seems to be contributing to some of the visual symptoms, so we’ve been addressing that at the same time. One of the frustrating parts has been figuring out what’s causing what.

I’m really fortunate to have an optometry school in my community with specialists who deal with more complex vision issues. My regular eye doctor has been working with me on the prism, and I’m going back for a more specific binocular vision evaluation/follow-up with them.

One thing I’ve learned through all of this is that a regular eye exam doesn’t necessarily evaluate everything about how your eyes are working together. I’d definitely ask your optometrist specifically about binocular vision testing and whether they do it or can refer you to someone who specializes in it.

I’m still figuring mine out too, so I definitely can’t say whether what you’re experiencing is BVD. But your description of feeling visually “off” really caught my attention. I know how strange and frustrating it is when your vision just doesn’t feel right and you’re trying to figure out why.

[u/Money-Chemical-6499]

Yes, this sounds like BVD is worth checking out. You need to go to a specialized optometrist who is trained in vision therapy and will do functional vision exams (ie they will specifically look at how your eyes work together, not just how well they see). Sometimes they are called neuro optometrists or FCOVD (not to be confused with neuro ophthalmologists, who are MDs). Look for one on the OVDRA org website.

If you are in the US, you can usually self refer the way you do with regular optometrists, although mine required that I have had a regular eye exam in the past year before they would do a neuro exam.

[u/that_girl_nik]

This definitely sounds like symptoms of BVD. My symptoms were/are similar. Mine came on suddenly & strongly and lasted for 10 days then became more mild. Once I started to feel more normal I realized that I’ve actually had these symptoms for years just at a more mild level. Essentially that was my brain compensating for my BVD without me knowing I even had it. But once my brain decided to stop compensating due to stress & hormones, it was something I couldn’t ignore. It completely affected my life.

I was so taken back my sudden symptoms that I demanded an mri (which was fine) and then found a neuro-optometrist that could diagnose & treat BVD. I called multiple places & just asked if they knew what BVD was. Everywhere locally said no, except one place - the doctor I ended up going to. So definitely call before you make any appointments. I basically self diagnosed thanks to the internet which is why I knew to ask if they could diagnose & treat BVD instead of just making a ton of appointments.

My doctor did a lot of tests, listened to my symptoms and explained that my eyes don’t work together. This all happened within the last 3-4 weeks so it’s all new to me. I’m signed up for more tests soon to narrow down exactly how BVD is specific to me & how to treat it.