Lola, I’m sorry to hear of your ongoing battles with migraines plus the incredible frustration with receiving treatment!
I’ve been suffering from vestibular migraines (VM) every waking moment since Thanksgiving 2017. Started with acute vertigo that lasted for five weeks. It ended my career 3 years ago. I still hope I’ll recover to try again, but things remain challenging. Every moment is some level of pain, pressure, dizziness and nausea. I’m currently looking for my third neurologist. My first so called expert helped initially, but I still had symptoms all the time! Also worked with a vestibular rehabilitation therapist for over a year because I had to re-learn how to walk and do basic things. I still get very dizzy while looking up or bending down. I started with my ENT who first suspected VM. Had numerous tests to rule out Vestibular Neuritis, brain tumors, Meniere’s, etc.
Worst thing my neuro did was put me on Topomax - drastically altered my cognition and basically made me bi-polar - couldn’t get off of that one fast enough! At the first neuro’s suggestion we moved to a smaller town closer to family (To reduce stress, plus I’m very sensitive to noise). Our move was a disaster (13 months and 16 tries) which didn’t help, then the pandemic hit. Such is life!
My second neuro (who recently left the practice) agreed with me to stop using two meds (Nortriptyline, Emgality) and have me try Botox and I’m finally getting some improvement on the severity of my symptoms - down to a level 3 of 10 most days after being around 5-7 levels pre Botox. Avoiding foods with Tyramine has been a mixed bag, leading me to believe it’s not really a relevant trigger. Before the Botox, my symptom levels were so high I couldn’t feel the impact of changing foods - now I can. Taking magnesium glycinate has helped as well.
My triggers in order are: stress, sleep, barometric pressure changes, noise and food. I had undiagnosed sleep apnea for decades which I’ve addressed with a CPAP, now getting 7+ hours of sleep versus 4 hours prior. When I get a cold, my symptoms, especially dizziness, go through the roof. I had Covid recently and nearly went into full vertigo again.
I recently found an excellent book called Victory Over Vestibular Migraine that is very well researched by a Dr Bey in Texas. He goes into detail about not just vestibular migraines but migraines as well. A lot has to do with imbalances on the neurotransmitter chemicals in the brain. Because of this, I learned that a protein powder I used for 4 years may have been a key unknown trigger for my elevated condition. I quit it cold turkey in October, had excruciating withdrawal headaches for 2 weeks but have been better since.
Tension in the jaw and neck muscles can also cause some of these issues. My dentist started working with some minor jaw issues I’ve been diagnosed with a year ago. Had to realign my jaw (we’re talking maybe 1mm) and wear a night appliance and it’s helped reduce tension quite a bit. When I don’t wear the appliance, next day my symptoms are significantly worse. I’ve thought about seeing a TMJ specialist, though I do not have TMJ.
I'm going to try chiropractor and maybe massage therapy again, but it’s expensive. But I still carry a lot of tension in my neck, shoulders and back due to prior issues. I’ve gone through multiple rounds of PT already, including another for a vertigo episode a year ago.
Sorry for the long book, but know you are not alone on your journey back to health!
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