I’ve been dealing with spins and off balance (among other crap) since December 2010. I was diagnosed when this started with BPPV by an ENT. I didn’t progress beyond that because tests cost more than I could afford. I figured out how to live with it. I work from home, so I can literally lay on the couch with my laptop and be fairly productive, even on pretty lousy days.
So, I’ve had a few good weeks and even good months since this started, but mostly have just racked up more weird symptoms, worse spinning episodes, and more confusion and angst about the whole thing. I set this appointment up with a local neuro about a month ago. I don’t have high hopes, honestly. To top things off, I just lost my job. My insurance will continue for several more months so I’m not going to cancel the appointment, but I don’t know what I’ll do if he orders a bunch of tests as my future finances are now less certain.
I guess what I’m hoping for here are some suggestions on how to speak intelligently about the symptoms. Like, I feel like I’m nuts that I can “feel” sounds in my face… for instance, when the dog barks, or there is a sudden loud noise, I literally feel it in my face (my sinuses, I guess). Sometimes just turning my head to the left (or the right, or up, or down, or cockeyed, or whatever–it’s different every day) will set the room spinning. Some days, even if I drank some wine the night before and hardly slept a wink, I feel nearly 100%. Some days, I’ve slept great, not touched chocolate or alcohol for days, and I can’t walk a straight line to save my life. Sometimes those perfect days end abruptly when I’m just looking at my computer, or the tv, and everything starts spinning. I can’t walk a narrow sidewalk even when I’m feeling close to normal. My head sometimes feels detached from the rest of me. My feet don’t feel like they’re hitting the ground at the right time when I’m walking. Sometimes. Every day is different. I see lights flickering at the outer edges of my sightline. I hear clicking inside my right ear, and sometimes a fluttering sound in there. My eyes sometimes feel like they are on a delay. Sometimes I feel like all the pressure is draining out of my head, or my face.
Seriously, when I describe these things I think I sound insane. Is this what I say to a neurologist? Is there better language that I need to use? I just want some answers; I don’t know that I’ll get any on Monday, but I’m tired of dealing with this and not knowing. I guess I have to at least start the process of figuring this out.