Vestibular Migraine -> Binocular Vision Dysfunction?

Specific Illnesses & Conditions
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Hi,
I am writing this on the off chance that it will help someone, because I think if you are reading this you might be looking for some hope like I did in the past year. Here a bit to what happened to me in the last year or so and what I learned.

(Male 37) A year ago I did usually not have any issue with health apart from headaches when sitting too long behind the computer and the infrequent migraine from pressure change or bright lights. After a business trip I started feeling like jet lagged which over the course of 2 days transformed into very strong dizzyness, brain fog and nausia. It didnt seem to easy for a week so I went to the GP and got diagnosed with BPPV, and obviously it didnt help. The dizzyness, feeling like floating, drifting, brain fog continued for 3 further months (also developed tinitus and hot and cold feeling over my skin, mostly hands and feet). The medical pathway was roughly ENT specialist → MRI of brain and ear nerves → 2x Optometrists → 2 Neurologists → with the final diagnosis of vestibular migrains.
I first started off with Amnitriptalin 25, and after a month the symtoms seem to have eased so I could finally go back to work. 2 months later the whole thing returned and I was again bed ridden for 6 upcoming months while being switched to pizotifen (1.5mg) didnt seem to do anything.

Because I had a lot of time, I started to do a few tests here and there (like keeping my eyes closed for multiple days) and my condition improved slightly but once I used my eyes again, things went south pretty quickly. This made me believe that its connected to my eyes, but both my neurologists seemed to think its unrelated. Nevertheless out of boredom and searching for hope, I found a conditon called Binocular Vision Dysfunction (BVD) which could alternatively explain my symptomes. This dyscunction stems from the eyes, as the two images produced by each eye are not aligned and strain the brain to align them. I went to two optometrists again who specialize in this subject but was not able to get any help. Only later did I find out that BVD is very common but only very few optometrist can actually look into it from a neurlogical perspective. There is for instance only one here in Australia and and non in Europe from what I heard (most are in the US).

Fast forward a month, I went to visit the the special optometrist here in Australia, and after doing alignment tests with me for an hour and a half he had one perticular lens which could help. Once he placed the lense into the temporary glasses, within 1 second the strain in my head lifted. I could not believe it.

I have the final glasses now, and all my symptoms have slowly dissapeared, and I am completely off pizotifen as well. Andrew has told me that there might be many mis-diagnosis of vestibular migraines as neurologist are not aware of the link to BVD.

Now there are a few things you can do to check if you might have BVD. The first one, if you have brain fog is to close one of your eyes for 15-20 seconds. The brain fog should lift. I had brainfog for 3 months, could not shake it despite doing nothing but being in bed, but it lifted when I closed one of my eyes within 10 seconds.

The more general approach is to take the test on the offical website. Please use the link below because it will tell you where a suitable doctor is. Dont waste your time like I did with specialists in BVD who have no idea about this condition even though it falls under BVD.
(admin: link removed). Personally I scored 31 which gave me enough hope to fly interstate and see the doctor.

Another test you can do is to stand 2-3m away from a mirror. Close one of your eyes and look at your face with the other one. If you feel a drifting sensation within 20 seconds remember to which side it is pulling you and do the test with switched eyes. If it pulls you in the other direction its a positive response and could also indicate BVD.

The doctor who pionieered the neurological BVD treatment is Dr Feinberg and she gave a Ted talk few years back describing the issue at hand.

I hope this helps someone out, cause I understand how difficult it is having no hope and seeing no improvement. I appologise if anything in the text is unclear. I am happy to answer any questions if there are any.
Wish you guys well!

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@Martin_G thanks for your Topic and welcome to the board.

However, be aware of the following:

  • your Post is full of spelling mistakes. We don’t know you so be careful of these because they make your post more suspicious.
  • you’ve never posted before but your first Post claims an unusual diagnosis and treatment plan, this is highly suspicious behaviour and sets alarm bells ringing, why have you only posted here once you’ve found a cure, and one which no doubt requires the services of private doctor?
  • your Post included the name of a private physician. I’ve deleted this as we cannot have first posters who aren’t well known to the community promoting the services of named physicians
  • your Post contains links, these I’ve removed as are not allowed for new members that haven’t built up trust.

The “official” website link you posted is a private practice that no doubt makes money from encouraging people to get tested for BVD and subsequent treatment plans?

I apologise if you are a genuine member of the public trying to help people, but people here are very vulnerable and desperate for solutions.

With the possibility you are genuine I’ve allowed this post, but readers should be wary for the time being.

BVD could be simply explained by trouble with the Visual Ocular Reflex and might actually be due to an ear problem with migraines caused due to an escalation of the impact of the ear problem on the VOR and its confusing impact on the brain. Amitriptyline should help with that. Given you had none of these problems for the entirety of your life until very recently, I find it quite hard to believe you have an eye alignment problem as surely you’ve had roughly the same alignment since becoming an adult at the very minimum?

Your plane trip could have been the source of an ear problem? Pressure fluctuations in aircraft can definitely upset your ears.

The foundational medicine around Vestibular Migraine is pretty terrible (and treatment is very unreliable), so this leaves a vacuum for a lot of theories and it is tempting to latch on to one or other.

You could have simply spontaneously got better (as I did) and that might have, by pure coincidence, happened at the time you pursued BVD ‘treatment’? So it might have just appeared that the BVD treatment helped, but in fact you were getting better anyway?

If we don’t see significant amounts of convincing interaction from you with the community over the course of a few months I will delete this Topic.

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That is not true. I googled “Binary Vision Dysfunction” and there are lots of optometrists in each state who seem familiar with this condition.

I just did the test and it does not give you a result, but asks you your details so that someone can be in touch with you. This sounds very suspicious to me.

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Hi,
my apologies I did not try to stir up any commotion. I will try to elaborate on my initial posting. If there are spelling issues then I appoligies, I am not a native English speaker (despite living in AUS) and there doesn’t seem to by a autocorrect here. Plus correct spelling is not a pre-requirement in my books to try and help people.

I am not suggesting that all VM cases are related to the eyes I was just trying to spread awareness that BVD can be masked and potentially mis-diagnosed as VM as it was in my case. There were quite a few points/doubts raised so I will try to answer this point by point:

Initially I planned to post this story in linked but was encouraged by my working college to look for a more focused group as it might reach the audience which could benefit from this the most hence I found this website, registered, checked if there is any post about eyes, didnt find any and hence wrote the story. Later I found that there are a few posts about BVD so I apologise for my negligence.

Probably first and foremost I need to clarify on the terminology of BVD which might be the main issue here. I never said there is a single doctor that looks at BVD, its obviously a very widly known condition. Me for instance, I went to 2 optometrist who specialize in BVD and they said my eyes are perfectly physically aligned. The big difference to the BVD I have found to have is that the two images which are generated by the eyes are not aligned. And unfortunatly this is something that hardly any optometrist checks, because the standard check is to loo kat the physical alignment.

I posted a link to a specialist here in Australia who looks at the alignment of the 2 eye images. I did not mean to promote a specific doctor for any type of money incentive. I do not care whether you will go and see him, I am just stating that I wasted my time and hope when I was having a sliver of hope with optometrists that did not help me.

To my knowledge there is no subsequent treatment plan? At least I do not have one. I got prism glasses and he did mention that they might need adjusting but it didnt seem to be a money grab from my perspective.

This seems to be very unlikely, as literally putting the lens informt of my eye lifted so many symptoms. I think the likelihood that I had 2 bad VM diagnosis is more likely.

This is an interesing point. I though I didnt have any issue but now that I know what I have quite a few things started making sense. For instance, I never liked shopping and was always in a bad mood because my head felt funny. Now I realize that the amount of stuff my brain has to process and try to merge the two images was simply too stressing. This was particularly bad when walking through ailes in the super market. Also regarding the point that it came up only now, I read online that it is suspected that with this type of alignment issues it becomes more obvious after hitting 40 years of age because the brain looses capacity to cope with the constant misalignment.

I am not sure what Binary Vision Dysfunction, but I suspect this comes to the lack of explanation I made regarding the specific BVD I was speaking off. Hopefully this is now cleared up.

Yeah I see the issue. I have attached the email I got back personally i think within the next 24h or 48h after entered my email.

Screenshot from 2022-11-04 13-57-07
Screenshot from 2022-11-04 13-57-071412×653 86 KB

Reading the email now I do agree it all sounds like a sales pitch. Personally I called the doctor myself and it still sounded dodgy because he was telling me that its a different technique but was quite vague. Nevertheless I flew there and it changed my life. I do not mean any disrespect nor harm. I am just certain that I would still be a vegetable if I didnt try this for myself and if there is a chance that someone might have had the same misdiagnosis, then I feel i need to share this to potentially help someone out.

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By “treatment plan” I’d include the cost of the glasses. That’s good to hear there were no other costs involved.

Were you offered your money back if it did not resolve your symptoms?

that’s quite an obvious resolution then.

I’d be very interested to hear from other board members who’ve tried this solution and what their experiences were, not everyone finds this works out:

(as expected I suppose).

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Thank you Martin for sharing. I was THRILLED to hear your story. I knew immediately that you were a foreigner (Eastern European?), and a smart one too. Your vocabulary is excellent and you reason well. Certain moderators here can be a little zealous (please note the lack of -over turnitaround.) Thank you for your patient response to all his questions.

I have been convinced for years that this could be my problem since i too have alignment problems. Mine started immediately after i had emergency retinal surgery in Kenya Africa in 2014 when the doctor gave me so many shots of anesthesia that i think he paralyzed an eye muscle. When i took the bandage off, the “repaired” eye view looked lopsided. My vertigo started shortly after that.

Now when i look at my phone, the good eye sees a straight up and down screen. My bad eye sees a phone cocked to the right about 10 degrees. (That is my personal test.)

I have asked my otoneurologist here in the US, arguably the best in the country (Priesol.) He says the brain compensates for the misalignment so it shouldn’t be the cause. I am on the fence about that. I think some do, some don’t.

I self-diagnosed and did get prism glasses too, and i didn’t notice it helping that much, but i know it must have. I was fairly stable after those glasses. I don’t have them anymore.

HOWEVER, here is my conundrum: elevators are my biggest trigger. I was even sensitive to elevators as a teen.

So your post is incredibly helpful to me. THANK YOU. I now have a word for my own self-diagnosis. But i think i also have VM. It is also possible they are related. Another Harvard doc (Whitman, now at UCLA i think) thought i had a variant of Mal de Debarqument Syndrome, because of the elevators. And that’s just another VM variant they posit. So perhaps it’s all related.

If you got initial help from Amitriptyline, GO UP on that if you need it. Don’t give it up. Yet ANOTHER Harvard doc (Rauch) says most folks don’t get help from it til 30mg. I’m on 30mg myself. I was doing fine on 15mg and had a relapse, so went up and am better. Try it again!

Okay, more soon. I will keep an eye on this. And yes, I’ve been so lucky to see all these Superstar VM docs because i lived in Boston for a year and they all worked at Mass Eye and Ear then. They were all wonderful for different reasons.

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Also, do you know the good BVD doctors in the USA? Turnitaround, can you please not remove the names he posts of doctors who might help in my country? I would like to revisit this possibility. Thank you.

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Sorry, I will not change policy on this.

My moderation is far from “over-zealous” and rooted in common sense, thank you! You’d do well to employ some.

Every so often this site is abused by shills who try to make money off Members.

The appropriate counter to that is to force them to engage first (as an innocent person would) and that will deter 99% of them and weed them out, though we’ve had a couple that have made bigger efforts to deceive.

Names of physicians posted by Trusted members will always be retained unless there is clearly another very obvious concern. Trust is earnt. (For those that are not familiar, by positive engagement with the site over time and it is largely automated).

I would warmly welcome any feedback on BVD treatment by Trusted members including names of physicians. That includes yours @shazam so let us know how you get on.

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As i said, you are ZEALOUS, not “overzealous.” Read it again.

And I have seen posts from shills here and i hate them. But Martin was clearly not one of them.

Anyway, his information was very helpful to me. I already know i have BVD and was glad to learn how it mimics VM, or possibly triggers VM.

I hope he comes back. And please don’t equate misspellings as spam. Plenty of english-speaking people have learning issues and don’t spell well, and we should welcome foreign-speaking participants. I would be super-careful there.

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Fair point. Glad it was helpful. And actually vindicates me leaving it up.

Policy remains.

Please let us know how you get on and good luck.

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Hi Suzanne,

yes I am from eastern Europe, quite impressive how you got that from a piece of text. :slight_smile:

I think at first I was a bit emotional/disappointed that my post got deleted because I wanted to make people aware of this condition, but in retrospect I do understand that there are people who abuse the situation for personal gains so its all good.

I have read your story with interest and have a few comments from my side. I went to a BVD specialist who gave me prism glasses but they didn’t do anything really. Later I found out that these were yoked prisms which really do not do anything for misalignment. I then found someone on youtube who referenced a certain misalignment test. Turns out it was pioneered by Michigan Vision Specialists (type it in to google and the first link is the correct one). They call the techniques with which they assess the eye misalignment (or eye image misalignment) the Feinberg method. Probably best to give them a call and ask where a nearest practice is which follows this methodology.

Too be completely transparent and avoid being accused of trying to lure people to a certain practice, these were the tests that were done on me (so you can figure out if you went through the same process with someone else):

Vertical misalignment: They placed special glasses on me and made me look into a point source of light roughly 1m away. One of the lenses was red the other transparent. I was asked to close one of my eyes at first for 3 seconds and then open it. Once I opened the second eye, two dots emerged which within a fraction of a second combined into a focused single dot. The thing was that for me, the red dot was much much higher than the white one, meaning I had a vertical misalignment. He then started to adjust lenses until the two dots appeared in a horizontal line at the first instance and then fused into a single dot. I tried this at home later cause I wanted to post this here as well but found that I could not replicate it. I suspect the lenses were not just colored but had some emphasis on the vertical axis which made the misalignment more pronounced.

Horizontal alignment: The doc had me stand upright and just look at him for 20 seconds with some glasses on. I usually started to drift to one side and he started to adjust lenses accordingly. Once I was without the feeling of drifting, that seemed to be the well aligned horizontal lens.

Personally I find the vertical test much more scientific as its really measurable. The horizontal test (the doc kept saying that he came up with it) seems to be something sub-conscious so hard to say how well that can measure the correct horizontal misalignment.

I hope this gives you some insight and hopefully you can compare it to your own experience and decide whether its worth pursuing,

In the meantime, since I wrote the initial post. I have started detoxing off pizotifen, and the dizziness, tinnitus and skin pricking came back, but not as bad as before. So I am yet to see whether my system is just going crazy or if I need some type of drug to maintain a good state. Personally I do not like to take drugs because I have no idea what it does to me, so I will keep that as a last resort for now.

Edit: The elevator trigger is quite interesting, it would most likely mean that its caused by the feeling of movement more than the eye unless you are in a glass elevator? Now that you mention it, I had for the last ~20 years problems with being in a high building (10+ levels) and looking out the window. Personally I always felt like the building is moving in a periodic motion and it made me very very unconfortable.

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I’ve lived all over the place and taught for a year in Prague so your language just seemed very familiar to me.

And I went to the Michigan Ear Institute for the prism glasses. What town is your Michigan place in? Small world it was also in Michigan. These were surprisingly knowledgable doctors for the midwest. And I think i had those same tests with the red dots. At that time, i was seeing double lightly in the bad eye when i read texts. I don’t have that anymore so i do think my brain compensated. I spend summers in Michigan so I could investigate the Feinberg method next summer.

And yes, i too have issues with looking up at buildings or canyons or looking down from up high. Feels very related.

Thanks for responding. No spelling errors!

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Please don’t sign your posts: it’s wasteful of space and redundant. If you want to show your real name add it to your profile and it will appear on your User Card, just a click from your Avatar. Thank you.

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Thanks for sharing this info! Ive had issues for 5 years now. I stopped driving 3 years ago because of the vision issues. Grocery stores and driving in the car are awful. I feel “visual vertigo/fatigue.” I too went to an a regular ophthalmologist, optometrist and a neuro-opthalogist as well as a regular neurologist and was told migraine. I even brought up BVD and vertical heterophoria to the neuro-opthalmoligist and he didnt “believe” in it. He was in Seattle! Its SO frustrating and I often wonder if the vestibular migraines to stem from a dysfunction in the eyes. Ive talked about this for years to my family and i think i just gave it up because i just accepted vestibular migraine.

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Update
It’s been almost 9 months now since I wrote the first post, and I wanted to write an update so people have a more complete picture.

What happened since:
I got the prism glasses in October 2022 and my vertigo plus other symptoms went away gradually. At that time I was on Pizotifen 1.5mg which I dropped. Things continued quite well for me but after two months some of the symptoms started to come back, e.g. tinnitus, nervous system overload (cold/hot feeling in arms and legs), pressure in my head, but no vertigo.
At this point I was still fine and able to function and work full time, although each evening I was pretty wrecked, but luckily recovered over night. I felt that it was not ideal to do nothing so after a conversation with the neurologist I started to ramp up amitriptyline to 25mg. This was around the beginning of January 2023.
It took two months to feel some relief (unsure if it was the drug or not) but in March my neuro suggested I try 35mg as I was still super exhausted each evening after work.
With 35mg, things started improving around May 2023 and I was feeling as good as ever and basically had no issues anymore.
Unfortunately a month later I had an international business trip and when I came back home from it all the symptoms came back (except the strong vertigo) and I would not be able to work for the next two months.
I tried a different neurologist in the beginning of August 2023, and he had the same impression that amitriptyline actually doesnt do anything for me so he put me on Avojy (fremanezumab 225 mg monthly). To my suprise, I felt relief within 24h and it stops the migraine in the tracks, although tinnitus and nervous system flare ups still remain. I am not totally fine but can work quite comfortably.

So what did these 9 months tell me about the glasses?
First of all I found out that the specific BVD condition is called vertical heterophoria (other people have mentioned it here as well, but it was unknown to me when I made the initial post). I think the glasses for me are very effective in reducing the strain on my head and have removed large parts of the vertigo for me. However, even without the vertigo, the migraine when aggravated, puts me into a state where I start losing vision and at some point cognitive functions. So in that regard the glasses are not effective in resolving the migraine. I do however continue to wear them as without them I have way more strain headaches.
Also another interesting fact is that I went to a neuro-ophthalmologist, and he did not check me for vertical heterophoria, so it does seem that the doc I pointed out is definitely better at catching the condition.

What else works for me:
I have read the forum regarding other people’s suggestions and these ones below worked for me.

  • Acetyl L-Carnitine, made me way more energetic and I think it also reduced my recovery time after a migraine. I got a pack of pharmaceutical grade carnitine and feel it’s a bit better than the capsules. (two times daily 1 gram)
  • Magnesium Glycinate (300mg a day). I take it in the morning with oats as I have had a tough time getting it dissolved in water. With the oats the body seems to have an easier time digesting it. I am not sure to what extent it helps, but I feel that it keeps the migrain a bit more at bay.
  • L-Theanine (200mg a day). Makes me super relaxed and sleepy. I don’t take it always and it doesn’t seem to calm the nervous system but it is very relaxing. Some people seem to take it for anxiety as well (in case that’s your thing).

Hope this helps for some people in need.

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Thanks for this. After 8 years of MAV I’m finally in line to see a neuro-optometrist. This year, because of optic nerve pain and what seems like a major decompensation, I’ve seen an optometrist, a retinal specialist, a neuro-ophthalmologist, my neurologist and embarked on a second round of vestibular rehabilitation therapy. My eyes are mostly ok. MAV is very not. Part of that is the devastation that is my neck. Part, I suspect, is for the neuro-optometrist to sort. I gave him my case history. He said, I’m the guy (the last guy in the line) but you are very complicated so no promises. Still, every bit of help I can get, I’ll pursue.

Theses a binocular vision dysfunction test that measures potential brain injury. Score a 31 and there’s a strong suspicion of damage. I got a 76. One of the things BVD is often misdiagnosed as - MAV. I’ve got about half of the confounding diagnoses listed in the article below.

BVD Symptoms and Treatment - Optometrists.org.

Link to BVD questionnaire here.

I certainly found it illuminating.

Again, thanks Martin.