A Newbie Question - How to Spend the Days?

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 :confused: 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 :disappointed:

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…

Continue to play with your kids but try to avoid certain triggers that act it up a lot. For instance, mine is florescent lights and I’m currently unemployed, however, everywhere you go has florescent lights. I try to minimize the time I’m in those environments. On a bright side which I need to post, I bought migraine glasses which helped me yesterday when I went to IKEA. You’ll find a work around for situations.
Currently, I’m on B2 and the migraine diet. Those have helped for me. Got this condition June 1, 2017… took me a couple months to acclimate myself to my new environment and wobbles/imbalances + sound sensitivity (I hated hearing dishes clanging/being washed) and I’d retreat a lot to my bed in the beginning, but over time my brain / ears are compensating and reducing those symptoms. Don’t let yourself get too hungry or the beast will act up. Too bright of lights (even LED) will act it up if you’re photosensitive, so dim the computer monitor and if you have house lights that are bright LEDs try to dim them to see if that helps. Grocery stores can be tricky so try to get in and out.

I feel like I’m rambling a bit but moral of the story is continue to stride on with your every day life as hard as it may be because your brain is compensating every day with time, if something is however triggering it to be a bit too much then learn to curb whatever that may be (florescent lights or very bright LED lights in my case).

A lot of people here say to try to get some sort of exercise every day. Even if all you can do is go outside and walk around the perimeter of your yard a few times, that counts!

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