Not sure how to start. I'm scared something is really wrong even though it's likely
what I have is nothing more than BPPV.
I'll try to keep my history as readable as possible. Edit: Tried to keep it short but it seems like I need to get this off my chest and couldn't stop. So I'm adding:
TL;DR version: ~8 months of monthly recurring vertigo exhibiting all symptoms of BPPV until Hallpike test shows downbeat nystagmus on non-affected side.
- 4 years ago - woke up with extreme vertigo (lying on right side). Subsided after being "up" to pretty much not noticeable other than slight unsteadiness. Doctor prescribed meclizine as needed, no follow up.
First week of graduate school, was under stress.
- 2 years ago - vertigo woke me up (lying on right side), not as severe as first time. Subsided and completely disappeared within a couple of weeks. No doctor visit. No stress (vacation).
- November 06 - very emotionally stressful time. Vertigo attack as previous (woken up by it while lying on right side) 3 weeks later.
And that's where things started differing from the previous episodes.
After that last vertigo attack in December, I still felt "off" for a while, which wasn't unusual. Went to the gym and while on the elliptical machine I felt a very brief dizziness, similar to having missed a step. I started freaking out, my heart rate shot up to around 180+ bpm. Returned to normal shortly but I was scared.
- Early January - Shower, another "out of sync" feeling, heart starts racing. Went to UrgentCare clinic. ECG normal, blood test normal, no stroke symptoms. Explained my vertigo symptoms. Diagnosed with "Anxiety Disorder."
I felt horrible (off balance, slightly nauseous, anxious) for approximately 2 months. Then it just went away and I felt normal.
Since that episode, however, I have
been getting recurring vertigo attacks always following the same pattern once a month - and I know this because it always happens during the week preceding menstruation. Fortunately, they were brief and there was no other unwell feeling involved. Avoiding sleeping on my right took care of it and I felt normal otherwise.
- March - Referred to ENT who tested for BPPV but couldn't elicit symptoms (of course I didn't have it at the time of my appointment - go figure!). He diagnosed BPPV based on my description only.
- This summer (while on vacation again) another attack but this time the anxiety, off balance, nausea returned and I felt unwell to varying degrees for probably around 3+ weeks.
- 2 weeks ago - back to ENT. Dix-Hallpike test. No symptoms (what else is new..). Refers me to Balance Rehab Center. 2 days later, wake up with light vertigo but clears up completely within 2 days. The only odd thing was feeling slightly off while lying on the left side as well.
- Last week, Tuesday this week - visits at the balance center, doing a variety of tests to elicit vertigo. No response. Therapist finds slight nystagmus in left eye when shaking head horizontally. Does Epley maneuver anyway. Says no evidence of central problem - boy, I feel better!
- Wednesday - wake up with slight vertigo again. A little worse on right side but also slight dizziness on left again. Doesn't bother me at all during the day.
- Thursday - Still feel the vertigo a little in the morning when getting up but goes away quickly. Balance center visit, tell her about the episode. Goggles, Dix-Hallpike.. and uh oh, here things become horrible.
She first lays me on the left ear, the one I shouldn't have any symptoms in, right? Wrong. I get dizzy although not horribly. The problem, other than that it's the wrong side, is that 1) the nystagmus and dizziness barely subside and continue on for 60 seconds (she sat me back up at this time) and 2) the nystagmus is steadily downbeating.
She then tests the right side and oh man.....extreme vertigo but at least it does what it's supposed to do and subsides. Vertigo returns upon sitting back up.
So now she's concerned about the downbeating nystagmus and tells me as much. This doesn't do much for my anxiety - to say the least. And I hadn't even been feeling anxious. She still thinks it's BPPV and wants to treat me for it, but at this point I'm still so dizzy and scared, I just can't go through with it. I tried twice but just couldn't make myself do it again.
Since then I've been feeling off balance, slightly dizzy, nauseous, and just plain crappy overall. Basically worse than I did before I went. Woohoo. Of course I start reading up on downbeat nystagmus and that was one hell of a bad idea. My anxiety (or at least that's what I assume it is) starts acting up, and I can feel myself approaching panic attack levels. I have Xanax I can take as needed and I did. It does help so I can only assume that it is indeed the anxiety making me feel like I'm about to die and not my body.
But I'm scared. I haven't had any scans done so I often wonder if they can really tell it's something as benign as BPPV (sorry for the redundancy) or something more serious. It really didn't help much that she said she thinks it's BPPV and not something like a tumor although she, "won't rule it out."
And I can't, or don't want to talk to my family about this because I don't want to worry them needlessly. I'm not even sure what I'm asking for here other than feeling like I need to talk with others about this and maybe looking for reassurance... something, anything. I'm scared.