Hi everyone - new here and to MAV diagnosis. My story and then a question…
So starting in early December I got my first dizzy spells out of nowhere. I also had an aura migraine and tinnitus. I was COMPLETELY stressed out as usual this time of year - super busy with work, all the holiday prep/trip/present planning for my family and others etc etc. On top of that, my son is applying to schools and all the interviews and applications (which are more intense than I remember for college!) were all taking place and due just after the holidays. At the time, I attributed these dizzy spells/odd health issues to anxiety attacks, but also saw my PCP who thought it was bc of my low blood pressure.
Jump forward January and the spells started to worsen in severity, frequency, and length. Then two weeks ago I landed into this constant land of vertigo with head pressure. Since I do get chronic sinus infections I went to my ent, assuming it might be a sinus infection. I had no nasal symptoms, but my ct showed slight build up in back sinuses but not enough for my constant vertigo. So alas, I was sent to the ENT’s “dizziness” specialist neurologist and low and behold it looks like I have MAV. EVERYTHING has fit into place symptom wise! I’ve read lots of forum comments and relate so much - to my relief and dismay Looking back now, I realize I’ve had this/or had migraine on and off since my mid-20s, but never to this degree.
So do any of you watch stranger things? I have been telling people I feel like the boy who has flashes of the monster and other realm. It’s like I first had flashes w extreme terror of this beast, but now I’ve suddenly just entered this dark, off, eerie other realm and can’t get out. I still occasionally see the terrifying monster and have an awful panic attack. But for the most part it’s the feeling like I’m on a boat, w increasing head pressure as day goes on. I have extreme sensitivity to light and sound and motion and smells. It’s like my brain is just extra sensitive these days and I can’t get back to the clarity that I want
So my question is - now that I’m stuck in this other world - do I try to rest and avoid all environmental triggers? Or should I just try to go about my life and accept it? I can function to some degree - crowds are really tough but I can play w my kids w breaks/ cook / do an errand at a time etc when I am feeling good. Other times, like today, I have to retreat to my bed. I have stopped taking on work projects for now (I’m a photographer and thankfully winter is slow period anyway). Still, life is impossible to ignore as I have I have two little boys and our house is loud and chaotic!!
Since I just saw the neurologists I’m not on meds yet - just the elimination diet and I started magnesium and b2.
Thanks for having me and hearing me out! I am amazed by how many people deal w this and that I’ve never heard of it until now…