Hi, I’m Brandon and a month ago I learned the symptoms I’ve been experiencing for nearly two years is MAV. I’m hoping this community can support me through this and even help me possibly find my solution!
This started in April of 2018 after I got back from a music festival. I noticed I felt dizzy, almost drunk, a few days after the party was over. I assumed I was just tired and thought nothing of it and eventually it went away. Until December 2019 I would have on and off periods where I felt ‘off’ and it was definitely concerning, but it wasn’t disabling. During the period between my first attack in 2018 and last December I got kicked around by my GP to different ENTs who told me the Epley maneuver, stress management, and meclizine would make these weird periods of vertigo eventually go away for good. Right after Christmas I got my first severe attack and knew something was definitely wrong. My GP referred me to a neurologist and in January I got to see one who explained to me these attacks I’ve been experiencing all this time is MAV.
My attacks have no trigger or warning, usually start between 6-8pm, happen every 1-3 days, and don’t go away until I fall asleep. My symptoms during attacks are horrible: disabling vertigo, feels like I’m walking in a bounce house, absolute confusion, muddy vision, severe nausea, difficulty hearing, crippling anxiety, and exhaustion. I can go from perfectly fine to a non-functioning human in the span of minutes and its terrifying. I have to stay awake and ride through the attack until I’m so exhausted I fall asleep sitting up because lying down and closing my eyes make symptoms worse.
I’ve been on B2 and Magnesium Oxide supplements for the past month. I’ve tried nortriptyline for the past month and got up to 30mg, but saw no improvement. My neurologist is moving me to venlafaxine next week to see if that helps. I’ve spoken to her about propranolol and triptans, but she doesn’t want to introduce too much at once. I’m praying the solution comes soon because every day it seems to get worse.
I used to love my life, but now find myself depressed. Between work, traveling, music festivals, road trips, exercising, and Disneyland adventures I kept myself extremely active. I was the life of the party and the most spontaneous person around. Now, I can’t bring myself to leave my room because at any time I might become suddenly incapacitated. I’m trying to stay positive but it’s incredibly hard when I’m in my 20s, the prime years of my life, and I’m spending it bed-ridden. Everything happened so suddenly and I’m still trying to process this new reality. I booked my dream trip to Europe for this summer right before these severe attacks began and I’m devastated I might not be able to go. I want to believe that one day I’ll be symptom free, but right now it’s extremely hard to see the light at the end of the tunnel.
I try to look at the bright side of things. I’m extremely lucky my job’s flexibility lets me work from home on bad days. I’m beyond grateful that I have solid health insurance, the financial means to search for a solution, and an amazingly supportive neurologist. Lastly, finding this community has been a godsend and I find comfort in knowing I’m not alone.
A few questions for you guys:
- How did you go about explaining this to your friends and family?
- How did you inform your boss and employer that sometimes you might be unable to do anything because of this?
- Are there any other medications I should bring up to my neurologist?
- My neurologist said triptans can only be taken 2-3 times per week at first sign of symptoms, but it seems like some of you are taking it daily. How did you manage to get approval to do that?
- Have you tried abortive medication you take during an attack that worked? What was it?
Thank You and I hope you’re feeling better!