First neuro appt. Monday--nervous and unsure

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.

May I suggest writing a list of your symptoms? Just write them down exactly as you just did in your post. My 13-yr old daughter is the one suffering from VM so I’m supposed to be the clear thinker when we go to appointments, but I’ve even taken to handing the dr. a written list of her symptoms because that way I don’t forget to mention one of them. And some that you may think are minor may be what the dr. would want to know. Also, is there anyone who can go with you to the appointment? I like to have my husband come with us because he will think of different questions to ask, and remember different things that the dr. said. Another adult there with you can listen to see that you’ve explained everything you wanted to. I always make a list of points I want to ask the dr., too, because once some of these doctors start talking you go onto something different…and it’s easy to forget to ask something you wanted to. Make a request that they send you a copy of the doctor’s notes from the appointment - I like to know that what I understood from the appointment agrees with the plan that the doctor writes down!

When you were diagnosed with BPPV, did they do the Epley (think that’s the right name) maneuvers, moving your had around to try to put the crystals back in the correct place in your ears?

Good luck at the appointment, just don’t be shy in making the dr. understand how you feel.

Thanks for your reply, Anne! I will definitely work on a list of my symptoms this weekend. I want to be as detailed and clear as possible. I don’t know if I can get someone to go with me on Monday. My husband will be at work, maybe a friend will be available.

My BPPV “diagnosis” was from an ENT that seemed annoyed with me that I couldn’t fork out the $1,200 (out of pocket) to do some kind of tilt table test. I had a high deductible health plan at the time and simply didn’t have the money. So with my symptoms at the time, he said it was likely BPPV and said to come back if it didn’t go away. That appointment alone, in which he really just looked in my ears, did some basic balance tests, and pulled a chunk of wax out of one ear, cost me $450. I never went back and like I said, learned to live with it. So, no, no one did the Epley. I tried some movements at home after watching youtube videos but I didn’t notice a difference.