I copied and pasted the article into a document that I saved. I can send the article to anyone if they’re not able to view it through the link.
Why Dizziness is Still a Mystery
Thanks for sharing Anna, (and great to hear from you, hope you are doing well )
The quote that grabbed me and reminded me of my very first day when MAV hit:
“Many dizzy people wonder whether they are dying.” … is more or less exactly the feeling I had when my first (presumably) neurological symptoms hit me. My first thought was: have I just had a stroke or a heart attack? (having no clue what either of those feels like!).
The other piece I totally related to was this:
"dizziness pushed him to reëxamine his life. He decided to stop pursuing projects with only money in mind and focus on what he was passionate about. "
That’s exactly what I did, and it’s an aspect of MAV that actually, counter-intuitively had an ultimately positive impact on me.
The surprise for me was this:
““Look up to the sky,” the researcher said, and collected seven microlitres of my tears.”
After all this time on the forum, I never knew that’s how they could test for it - that’s so conservative I’m tempted to get that done.
I look forward to the day when we have more conclusive aetiologies, fully objective determinations and treatments that work fast.
Hi James, I’m doing well! I don’t stop by this forum as much as I used to but as soon as I started reading that article last night I knew I had to share it here.
One of the quotes that jumped out at me was: “‘If people had to rate the severity of impairment of benign paroxysmal positional vertigo against a heart attack, most of them would say that vertigo was the worst feeling of their life,’ Zwergal said."
My bouts of super-violent spinning were the scariest thing that’s ever happened to me. The most scary part of it is wondering whether it’s ever going to end (and what would happen if it doesn’t).
Like you, I was surprised that there is a test for CGRP and wondered why that isn’t done more often.
I was also surprised to read about the German Center for Vertigo and Balance Disorders. In all the years I’ve participated in “dizzy forums,” no one has ever mentioned that facility. The two that were always mentioned were Dr. Hain in the US and Dr. S (can’t remember his full name) in the UK.
What a brilliant article. Where the writer says many patients compare vertigo to a heart attack and say vertigo is worse - vertigo is debilitating. I have spent years locked away in my bedroom because my VM was so severe i was unable to tolerate light, noise, led screens, even people speaking to me. The sensation of dizziness is so horrendous, it’s anxiety inducing and you can’t do anything because of it. No medical professional understands it unless they’ve felt it. At almost every one of my appointments my neuro would ask “do ypu work?” as if that’s even possible. At my worst i could barely make it from the bed to the bathroom, of course I don’t work. They have no concept of the fear you feel of it coming back and taking over your life again, of how you don’t live, you just exist.
But i also agree with vertigo changing your perception of life. I’ve been debilitated for so long that i now only want to focus on what makes me happy. I don’t care that i’ll never get a “proper” job or live independently in a house of my own - i just want to do work that makes me happy, live my own life and not what society tells you you should do. I just want to be happy because i’ve spent over ten years of my life (the supposed “peak” of my life, in my 20s and 30s) being absolutely miserable. Now I just want happiness and i’m hoping and praying i can finally achieve it even if progress is achingly slow and i’m not yet where i want to be.
A point about the cgrp test - just because it’s been discovered that many migraine sufferers have high levels of cgrp doesn’t necessarily mean that the anti-cgrp meds will actually work. As usual, treatment is highly individual. I hope there will come a day when migraines are understood and tests can be done to find the cause (nobody bothers to try looking for a cause, they just go into the guinea pig treatments of trying one med after another). I hope there will be personalised trestments that work much quicker than what we currently have.