I have anxiety in addition to this vestibular migraine thing, so I’m always worrying that I have something different, perhaps more severe than what I’ve been diagnosed with. What I’m worrying about now is that I actually have an issue with my eyes more than anything else - my symptoms seem to be on the less severe side compared to a lot of folks, but I feel like they’re driven by a difficulty I have in focusing my eyes and especially in keeping them focused on one thing for more than a few seconds without starting to zone out, “zoom in” with my focus on one spot, or have some blurriness. But that’s just me, and my ophthalmologist says I’m fine. I’ve also suspected myself of having diabetes, plus a whole host of other things for which there’s never been any diagnostic evidence.
What I’m really interested in is other people’s experiences doubting their diagnosis of vestibular migraine and why you’ve felt that way - if you ever have!
I did seek an alternative opinion from my neuro with her blessing … but the ENT surgeon came to the same conclusion as hers, and they were both right that I would improve on amitriptyline.
The fluctuating nature of symptoms doesn’t help nor the lack of definitive tests. I guess I sometimes feel they are telling you ‘don’t worry things will improve’ just to reduce your anxiety.
Yes I have before but then again 3 neurologists have agreed that I have MAV. I have also had many tests to confirm that nothing more serious is happening (MRI, EKG, EEG, ENG, bloodwork, hearing tests, etc)
There are so many potential triggers for the neurological based diagnosis of MAV. And so many symptoms. When the nerves of the head are too stimulated, I get a variety of symptoms including eye muscle strain and sometimes a little blurriness. Glare causes blurring. Nystagmus can be part of the problem, along with vertigo and other neurological symptoms. What worked for me was 3 months on Nortriptyline and learning about all the possible triggers in the book “Healing Your Headache”. I finally gave up all coffee and brewed decaf, alcohol, Asian food, foods with chemicals, etc. I now have a list of trigger items that do not affect me if I have small amounts and not all on the same day. I have reduced the brightness level on my computer. I check out large print books from the library. I do quite a bit to help my eyes. There is too much to write here. Good luck. Spinninggirl (firstname.lastname@example.org
I second everything that spinning girl says here… I have to be careful not to overdo food triggers esp caffeine, dairy, alcohol and fermented foods. Gluten and msg are also baddies as well as tyramine rich food like overripe produce and nuts. Coq10 and magnesium enormously help. I’m on no other meds at the moment and functional! Google dr Weil and his advice re migraines. It helped me more than any neurologist
Thanks for all your responses. I know I’m far from the only one with symptoms like these, but it’s also good to know that other people are doubtful of their own diagnoses from time to time.
I could have written your original post! I’m still new to my diagnosis, but have had the symptoms for as long as I can remember. I’d prefer more “natural” remedies, but I am taking .25 mg of Klonopin, which I really don’t think is helping to “calm the brain” to accept the therapy, but I’m really trying to watch the triggers and do the therapy. I’m thankful for this forum that reminds me I’m not alone. Thank you for posting!
Problems keeping your eyes focused sounds very familiar to me and is one of the worst symptoms i have. Luckily my optician tried adding a Fresnel prism to my glasses prescription (as apparently the focus thing is sometimes associated with various types of migraine, including vestibular) and that’s improved things a huge amount. Might be worth asking your opthalmologist about trying this.
The thing is though … what exactly is MAV? Seems to me its a description of what symptom you have rather than what cause you have.
I had had one migraine in my entire life prior to onset of ‘MAV’.
My personal theory is that MAV sufferers are population of people who are having vestibular migraines that trigger at different levels of sensitivity in addition to some other separate condition which also vary in intensity which is triggering the migraines - therefore what the diagnosis is not telling you is what is the trigger and why it has now become an issue. Get rid of the underlying condition and I bet most of these people would not have migraines ever again. Meds, supplements and diet can reduce the likelihood of a migraine, but they don’t get rid of the issue that made you more susceptible to migraines in the first place.
In my case, I may have diagnosis of ‘migrainous vertigo’ but I’m convinced my problem is actually my inner ear because of all the symptoms I have with my ear - highly variable tinnitus, some high frequency hearing loss, the occasional spins (usually position triggered) and fluid noises and sensations like a dripping or gargling (usually only for a few seconds as I get up out of bed) My personal theory, at least in my case, is this is down to some blockage in the ear due to debris, which explains the variable nature of the symptoms, relapses and the strange noises. You could imagine that this debris would move at night as you toss and turn your head and the new day brings a totally different configuration of debris and/or blockages making it much harder for the brain to compensate and therefore this exacerbates and prolongs the dizziness (and other symptoms). NB I don’t have any of these symptoms in my ‘good ear’
It’s really disappointing to learn that there is presently no scan that can image the inner ear with enough detail to identify any blockages.
On a positive note, it may be possible that the cause eventually clears/disappears on its own and this may explain why many get better with time and go into remission.
I hadn’t heard of Fresnel prisms, so I will look into that. Thank you for the tip!
James, I like your theory. In my case, I would say I have some sort of fatigue issue that triggers my migraines. I would think I have chronic fatigue syndrome (which is apparently highly related to MAV), except when I read about people with CFS they can hardly get out of bed, and although I’m always fatigued I’m never quite that tired. I’ve got just about all the symptoms though – but also all the symptoms of anemia, anxiety, and lots of others, so who really knows?!
Sure. Until we get better radiology we will not be able to get better information