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!