Looking back, I’ve had MAV for at least a decade, I just didn’t know it until it became disabling.
Emily, wow, a decade, that’s rough! Has your condition ever morphed for the better in that period?
Morphed it has.
I’ve mentioned I have multiple health issues before. Here’s a better run down and why I didn’t realize it was MAV until recently.
I was first diagnosed with PCOS in the mid-1990s. Polycystic Ovarian Syndrome is badly named. It’s really an epigenetic endocrine and metabolic disorder that affects the reproductive system and the cardiovascular system. It has effects on the pituitary, hypothalamus, adrenals, pancreas, liver, gallbladder, intestines, kidneys and ovaries. It’s very frequently co-morbid with hypothyroidism, insulin resistance, Metabolic Syndrome, migraine, diabetes and certain cancers. It directly causes infertility, obesity, hormone imbalances and other fun things. There are four basic incarnations of PCOS from mild to life shortening. I’m on that latter end. I check most of the co-morbidity boxes, even TMJD, though fortunately not cancer, not stroke and, if I’m very, very careful, not diabetes.
With all that going on, how can you tell if fainting spells (1990s), dizziness (always), the occasional seizure (2006 was a grand mal) are related to blood sugar, insulin or a vestibular disorder? The headaches didn’t come until much later, so migraine wasn’t on my mind.
And, I’ve always been off left to right. Always clumsy. I’ve probably had a vestibular disorder my whole life. My sister and I traded strep throat our entire childhoods until she had her tonsils removed. My own tonsils are full of fissures. My Eustachian tubes never functioned properly. I have long looked the ditzy blonde (though I have a masters degree and a post graduate certificate in another field, so not the dumb, ditzy blonde).
I had always assumed my quick spins and more frequent or sometimes chronic sailing episodes over the last 20+ years were related to metabolic or hormone issues caused by PCOS. It never occurred to me to wonder if everyone saw static snow, stars, colors, halos, refractory images or other auras regularly.
I went first to the ENT because my GP couldn’t cure my ‘sinus infections’. Mostly because they didn’t exist and were instead migraine. I have had chronic daily tension headaches and more occasional moderate migraines for years. I had no idea the vestibular issues and the migraine issues might be the same thing or that it was always active to some extent or another. I just knew I always felt somewhere between off and awful. I’d never heard of VM and didn’t put two and two together.
It was easy to dismiss. In September 2016 I had a total hysterectomy due to another frequent PCOS co-morbidity - endometriosis. That surgery led to a nightmare of surgical adhesions that literally glued all of my organs and skeleton together from the diaphragm to the pelvis. 44 abdominal and pelvic physical therapy sessions later and I can function normally without a brace, but not without chronic mild to moderate pain. It seems I will always have some measure of dislocation in my sacrum and a very easy to trigger but hard to fix pubis symphasis disorder. I’ll take it. There was a time when I could barely walk and the act of digesting food was torture. Now at least I can get out of bed, go to the bathroom and return without tears, though at times it’s a lot wobbly. (But not so wobbly that it stopped me from riding my bike yesterday. Some days are way better than others.)
I went ketogenic for several months in early 2017 during the pelvic physical therapy treatment as a way to bring down internal inflammation and the consequent pain. During that time, I wasn’t dizzy and didn’t have headaches.
It wasn’t until I had a migraine with brainstem aura in September 2017 that those two worlds, migraine and vertigo, collided. That aura reoccurred for five days and ran sequentially through my visual, auditory, speech and sensory cortexes and shut down all executive cognitive function for long periods interspersed with lethargy and brain fog. ER IV infusion brought the pain down from maybe 8 to 2, but never fixed the vestibular symptoms.
I was recovering slowly until December when I decided to work 60 hour weeks for a month. I’m a sole proprietor and had a huge presentation to give in addition to a lot of contract work. The stress destroyed me. By January, I was completely disabled with 31 headache days, 8 migraines with aura, hypersensitivity to everything, vertigo, nausea, fatigue, brain fog and visual auras all the time. THAT was when I discovered the term vestibular migraine for the first time.
But, looking back, with the exception of those few keto months early last year, I was always dizzy, always very motion sensitive, always a little or a lot nauseous, always seeing things that weren’t there and constantly with a headache. I just thought they were glucose/insulin issues from PCOS.
It’s that prior keto experience that led me to give some credibility to the Stanton Migraine Protocol. Topomax made me feel like I had radiation poisoning. I figured I didn’t have much to lose, as I was already disabled and on the brink of losing my business. With insulin resistance, keto is a slow fix. I’ll let you know in a few months how it went, or hopefully, is going. I meet with my VRT tomorrow for the second time and my neurologist at the end of the month to talk about whether I want to try a different med. I’m on the fence about it.
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Respect. Can’t begin to imagine what it would be like.
I follow this person who runs this blog
https://mummyseeingdouble.com/
She has endometriosis and MAV as well. Some of your case history reminded me of her.
Well she claims pilates helped her a lot ! Exercise, which I have started recently thanks to your inspiration has been helpful as well. Braved it in the gym for 30 minutes.
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I’m so proud of you!!!
I’ll check out the blog, too. 
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Good grief, you’ve had to deal with a mountain of health issues, I can only admire you for keeping such good humour, you are a tower of strength, well done!!
Where did your ear traumas fit into that timeline? What was the nature of your ear trauma? One was burst ear drum? The other? I definitely don’t think you can dismiss the impact of those on your vestibular system (and your brain). I didn’t even burst my ear drum and ended up with this!
The one thing I learnt from my doctor is that ear injury can appear to mostly resolve, but then a secondary set of symptoms can appear up to years later as a result of the building inner ear pressure. Exactly what happened to me (but in my case I only had peace for 5 months).
I wish you the best in finding just the right protocol to get things back under control so you can pursue a normal life once again.
Hi James!
I hate that MAV likes to wake me at 2:30 am, but it’s nice you’re on the sunny side of the globe at the moment.
So, I’m not lonely waiting around for the gym to open and grant me access to the pool.
I think I was 14 when my left ear imploded on a descent into Houston. 
As part of this MAV journey my ENT decided to fix my Eustachian dysfunction with ear tubes. Stupid, stupid move. The surgery went wrong from day one. I ended up with hearing loss and tinnitus on the right. That was in March 2016, six months prior to the hysterectomy, which also went sideways. The left ear, it turns out, also has a vascular loop which may or may not matter. We’ll see how VRT treats me today in another 11 hours or so.
And yes, I’ve had a lifelong mountain of health challenges. But, I can still climb actual mountains, so I’m not complaining. Ok, sometimes I’m complaining. But not at the moment. I’m blessed and recklessly, fiercely loved in my life. In the face of such adoration, I can’t despair for long. I realized this simple, profound, cheesy truth - I’m here to spread love. All these things have humbled me and torn away my defenses and ego; I’m better because of it.
Emily
And also very schmaltzy at 4:30 in the morning.
Ooh, gym’s open. Thanks for being here! 
I wake up at 4:00am pretty reliably … it’s not a massive issue because I can usually get back to sleep at some point … but it’s at this time I get my fluid sensations in the ear (like I used to get only waking up in the morning)
Ouch … I’m sure they were trying their best … but oh why does it have to be so unreliable?
Very well put, that’s happened to me too.
Enjoy the gym!
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Hi Thank you so much for recommending my blog and mentioning me. Yes I am a massive advocate of Pilates, it has helped me tremendously. The movements are my daily physio to keep me compensated and help so much with reducing vertigo and dizziness. I also have a support group at Mummy Seeing Double Support on Facebook. Its a wonderful group sharing tips and advice and more importantly not feeling alone and supporting each other. Thank you again xx
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I have a facebook support group too, Mummy Seeing Double Support, a wonderful group of very supportive fellow sufferers. x
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