We talk a lot about symptoms, many of them hard to describe, but there’s a sort of overarching symptom I really struggle with I’m hoping you can help me define or at least relate to.
For context, I currently have 24/7 symptoms, to varying degrees but constant. Most recent opinion from a healthcare provider is VM, but I suspect I’ll ultimately get a PPPD diagnosis too.
I just find that on top of all the dizziness, sensation of movement, etc., there’s this persistent feeling if disorientation/disconnection that almost feels like I’m always on the verge of passing out. It’s like this sort of heaviness that keeps me from feeling fully alert and stable, and it almost feels like I’m always fighting it, and if I were to stop fighting it, I’d faint (or something…?) though that has never happened of course.
It’s so hard to define but it’s scary and possibly the most difficult of my symptoms to cope with. Does anyone know what I mean? Is it the “derealization” I’ve read about?
I’d love to hear your thoughts or experiences. Thanks!
We call it “reeling”. I can barely think & feel like a space-cadet! Too much movement, visual & noise stimulation makes it impossible to tolerate. I need to kindly remove myself from the situation & “spot” when moving; walking & riding. “Spotting” is what we call it when an ice skater is spinning around… they pick a “spot” to look at as they spin. I’ll “spot” while walking across my living room & in the grocery store, & even while driving when needed. VM & migraine medications in general were a huge issue trying to find the right ones for me, my symptoms. My sanity was at stake as well. For those who read this, hang in there, there is hope. I had to give each combo of meds a fair charge to work of about 2-3 months & it was always best to titrate on & off any of the medication I tried. Remember to hydrate, get good sleep & move more (exercise as you tolerate). There is hope!
Hi Mimi. Sorry for such a later reply. Thanks for sharing your story — I think “reeling” is a good term. I’m sure our experiences are slightly different, but it’s so helpful reading and learning from one another. Wishing you continued hope and health.