Vertigo - Vestibular Migraine

Hopefully, my experience will help someone else with this unusual form of migraine. Read from bottom to top as I will always put the newest information on top.

  •  Research Dec 2023 - VM is a "genetic disorder that is impacted by environmental and hormonal influences. It is likely inherited from parents, but can take years to become active based on someone’s individual habits, hormone fluctuations, stress level or sometimes spontaneously." Funny thing, I don't recall any family history of migraines so mine must be the "sometimes spontaneously". I've always thought the stress about my neck was muscular because of the stenosis, but doctor said it's more likely the accompanying headache.  Reading material if you are interested:
    https://med.stanford.edu/ohns/OHNS-healthcare/earinstitute/conditions-and-services/conditions/vestibular-migraine.html
    https://www.hopkinsmedicine.org/health/conditions-and-diseases/vestibular-migraine
    https://www.webmd.com/migraines-headaches/vestibular-migraines
    https://my.clevelandclinic.org/health/diseases/22131-migraine-aura
    https://thedizzycook.com/vestibular-migraine-prevention-diet
    I got a book that seems pretty good - Victory Over Vestibular Migraine: The ACTION Plan for Healing & Getting Your Life Back. As I'm reading it, I will probably add some quotes to this page. Meanwhile, I really check the boxes for the diagnosis. Doctor has put in an authorization request for physical therapy.    
  •  Update Nov 30 - Yeah, a diagnosis!!: House Ear appointment gave diagnosis of Vestibular Migraine (a little different from regular migraines). Doctor gave me a list of some foods to avoid (I already avoid most of them but will need to watch others) and some supplements to start taking (Magnesium Glycinale, Magnesium Threonate, Vitamin B2, and Coenzyme Q10). There's even a diet website specifically for people with VM (Vestibular Migraine). Now to do some research on VM. It's different from BPPV, as it's not the chrystals in the inner ear, so the Epley exercise won't help.
  • Update Nov 27: both spine surgeon and neurologist are baffled by why heat triggers me, and neither can find anything definitive that’s causing the vertigo. Next up, physical therapy for the issues with my neck, in hopes that will calm down that trigger. Also suggested going back to ENT, which I will follow through on after the House Ear appointment, and seeing if PT eliminates the triggers (so, after first of year).  
  •  ENT appt Aug 23: Dr Shen ruled out inner ear issues, put in referral request of sub-specialist at House Ear (to rule out any possibility of the vertigo being related to acoustic neuroma surgery, 1997). He also said to have primary care refer me to my spine surgeon (appt Oct 4) and neurologist (appt Oct 26). House Ear appointment will be Nov 30th.
  •  From end of June through September I was able to identify that heat is definitely a trigger. Another trigger is certain activities that involve bending my head, a specific example, doing dishes. I’m 5'11" and my sink is average. A few years ago, because of my lumbar issues, I started putting a wire “shelf” in the sink, with a dishpan on that, so that I didn’t have to bend as much to do dishes. But even with not bending my neck as much, it still tenses up within a few minutes and many times triggers the vertigo. After the cooler weather set in, the heat triggered episodes have died down, but the ones triggered by my neck have continued.
  • Jul 20th, I had two activities planned for today. The first, I was over at the train club when a really bad attack started about 1pm. By 2pm I knew I needed to go to urgent care or ER. Got things under control enough to be safe to drive, and went to the ER. Got there about 3pm. Had some "follow the finger" type tests by doctor, blood work, EKG, and CT scan of head/neck. (The neck portion of CT answered why my neck tenses up when I have the attacks, as my neck is starting the same degeneration that has plagued my back for so many years.) Finally was able to go home about 9pm with the diagnosis of BPPV. ENT or House might still order an MRI to see if there is also vestibular neuronitis. ER doctor gave me a tablet of Meclizine (generic for Dramamine and others). Said to have them on hand and if an attack lasts more than a couple minutes and isn't relieved by the Epley Maneuver then take the pill which should clear things up in about 15 minutes. So, now I wait and see what happens before the next appointment(s). The whole ordeal must have taken more out of me than I thought, as I slept for 12 hours. 
  • Jun 28th (thru Aug 19), primary care doctor gave me a referral to ENT, but appointment isn't until Aug 23rd. He's doesn't specialize in vertigo, but can refer me to sub-specialist, hopefully to House Ear as they did my 1997 surgery. Meanwhile, from then until Aug 19, I was having more frequent attacks. I've been researching vertigo and there are 4 major causes. I know it's not migraine or labyrinthitis (ear infection), so it's either benign paroxysmal positional vertigo (BPPV) or vestibular neuronitis (inflammation of the vestibular nerve, which runs into the inner ear and sends messages to the brain that help to control balance). I've got to bear with it until I can see my ENT or House Ear. 
  • 2023 Jun 27, was bad enough to trigger making a doctor appointment for the next day. I had probably close to a dozen attacks, and the last one lasted about an hour and a half; only ending when I got home and was able to go to bed. Fortunately, there is a "feeling" (aura may or may not be the right word) that starts an attack, so that when driving, I've got a chance to get to the shoulder for safely "riding it out". This day as I was coming home from my sister's an hour away, I had to pull over once, then later, fortunately I was right at my exit when the feeling started, and I was able to make it the other mile home before it got unsafe to drive. I don't know if it's coincidence or not, but my cervical area is always tensed up during these longer attacks. I mention it to ER in case it was important (found out why Jul 20 when I had ER tests). 
  • Background: I am single sided balance (as well as hearing). Although I've long since (1997) dealt with various balance issues and do pretty well in that regard, the only times I've had vertigo issues is when I've had an ear infection. A z-pac always clears that up. However, since I broke my ankle last October, my balance has been more like 40% instead of 50%. Naturally, I'm using a cane more often to deal with that. But also since that time, I've been having bouts of vertigo that have been getting more frequent (couple times/week) and lasting longer (no symptoms of ear infection).