Today, Friday... in the wee hours of the morning, while I'm still not 100%, I'm clear enough to be able to write. Good idea, or not, I'm going to get something off my chest. Right here. Right now. Again, on a day when few are likely to venture in here seems safe enough. ;^/
A month ago I was diagnosed with Menieres. It was no surprise. It was actually an odd relief (followed by some amount of depressing feelings, to be sure) to finally have an official diagnosis for a decade or so of random and unexplained vertigo episodes. I'd begun to take note that the episodes were coming more frequently in recent years, and oddly, they were seemingly changing... in their presentation and duration. Over the last year and a half I've been experiencing BPPV (I came to find out) in addition to the violent out-of-the-blue vertigo episodes related to Menieres (which is all I had known for years). I didn't know exactly what was going on - I just knew that what had become familiar to me in regards to vertigo was becoming less familiar.
In fact, it was actually two lengthy BPPV episodes in 2016 that finally got me to an otolaryngologist at the end of that year where I underwent a series of tests that resembled what I liken to a kiddie kollege torture laboratory. Funny camera goggles, a simulated spin chamber, an audiologist shooting a water gun in my ears, and then playing audio ping pong into my ears while electrodes on my head measured muscle (or maybe it was nerve) signals. This last one was supposed to be the test that determined Menieres. While I got good and sick on the other tests, this last one, the one that was supposed to determine the worst, is the only test I failed, evidently.
image from https://lmhofmeyr.co.za/info-for-patients/balance-and-dizziness-examination/
That said, while I was sent home a year ago without an official diagnosis, I was told that I am experiencing two types of vertigo.
The longer term episodes of on again/off again vertigo are indicative of BPPV, but many of my symptoms and experiences (over the past decade and outside the lab) are classic Menieres.
They determined that my BPPV is caused by crystals in the anterior ear canal, and wondered if I had experienced any head injury. I explained that I'd had a mild whiplash injury ... maybe 5 years prior, but hadn't experienced these types of vertigo until more recently. The whiplash seemed to be discounted as the reason I'd be having BPPV now, so much later. But I was invited to take advantage of their therapies when I experience BPPV and it doesn't resolve quickly.
To try to minimize what she suspected is Menieres-onset vertigo, I was given the same instructions as if she had given me a membership card to the M-club. Cut salt, caffeine, stress, etc... So now, in addition to noting various types of fat content and other nefarious substances, I've become sadly aware of how much sodium there is in... well... nearly everything that comes in a box or a can.
While at the same time that I've become shockingly aware of the salt content of all my favorite foods, I've grown a certain amount of comfortableness with what feels like playing Russian Roulette with occasional french fries or potato chips. I've pretty much eliminated caffeine - pop is a rare treat at this point. Truthfully, though... I don't really miss it. And seriously... who needs all that fizz? And stress? In the last couple of years, my life is about as stress-less as it's ever been and is ever likely to be.
And vertigo still got me - twice now in just a couple month's time. For some reason, this past November, after I took my now annual hearing test and reported another vertigo episode (that had happened the week before), my otolaryngologist decided to make it official with an actual diagnosis. They're calling what I have Menieres.
Nothing changed really. Diet restrictions remain the same. Though, I was presented with several possible "treatment" options, none of them are acceptable at this point as the risks involved are worse (in my opinion) than what I'm currently experiencing. Especially, when so much that surrounds Menieres seems to be theory as opposed to anyone knowing anything for certain.
It seems that surgical treatments that might relieve the vertigo carry a high risk of permanent hearing loss. The maddening situation is that each vertigo attack likely damages the hearing in the affected ear each time it happens. Talk about a catch-22! When I (sort of) jokingly said that perhaps such treatments will feel more acceptable if/when I've finally lost my hearing (which is what typically happens with Menieres) she nodded understandingly. It was later that I learned that by the time a person loses their hearing, the vertigo episodes tend to subside or disappear altogether. What kind of sick joke is that?!?
And we'll not get into a lengthy discussion of tinnitus for now. It's depressing enough to learn that it is phantom noise the brain produces when a person begins to have hearing loss. In other words, it is quite literally "all in the head". It's actually kind of fascinating when you start to look into it. It would probably be more fascinating if I didn't have to contend with the constant whistle in my ears while trying to concentrate on what I'm reading. So much to research and learn about vertigo, tinnitus, sound therapy, Menieres. So many possible roads to go down.
It's discouraging. And on some level, overwhelming. When I first started trying to make dietary changes I remember saying to a friend, "it's a bit like trying to hit a moving target - you do these things, but in the end, you really don't know what triggers the vertigo." But this week it's dawned on me, that how it actually feels is that I'm the moving target, trying to do what I'm supposed to do (though, admittedly, sometimes not) and vertigo has its gun leveled waiting to catch me unawares. And frankly, it doesn't seem to care if I eat french fries or potato chips or down gallons of soda! This time it struck me the day after overdoing broccoli for supper the night before! And yes... I had cheese on my broccoli, and I've made note of that. I'm not unaware that allergies are thought to possibly trigger vertigo. The possible triggers seem endless...
gif from epainassist.com
But today, I'm starting to come clear and my brain doesn't feel like jello anymore. And it's a great relief. I smiled today. A real, honest to goodness smile. I actually felt my face forming in a way that I had forgotten it feels. Frankly, how it normally feels.
I will spend some more time in upcoming days/weeks researching again possible solutions, helps, anything I can about vertigo, Menieres, tinnitus, sound therapy. And once again, I will weigh whether or not to mention it to anyone I don't really have to because what always follows is "Do you know so and so..." i.e. whoever it is in our circle who experiences vertigo, or heaven forbid has been diagnosed with Menieres. Or some variation of what has become predictable advice from those who've never had vertigo, but know someone who has and who has found their cure. My bet is they haven't found their cure, they've just found their way of dealing with it. Just as I'm trying to find mine.
I know people mean well. Or so I tell myself. I honestly don't understand the psychology behind certain types of responses. The "Let's see if I can be helpful even though I don't know what it's like to actually experience what you have" response mystifies me. I'm guilty of sometimes responding that way myself. But I'm still mystified by it. I'm still frustrated by it when I'm the recipient.
What I wish right now is, if I mention that I'm dealing with vertigo (as in explaining why I can't be somewhere, or wasn't there), just recognize and appreciate that I'm struggling. Nothing more. Just saying "I'm sorry you're dealing with this" or "I'm praying for you" is HUGE. Asking if I need anything might be helpful, though honestly... I'm not likely to need or want anything except for merciful sleep and the spinning to stop, and then for the (this time around) jello-head to dissipate. Once vertigo has run its course, I'm just like you. Capable. Fully functioning. Happy. Until the vertigo strikes again.
When advice comes quickly, I don't feel respected that I am where I am in figuring this all out - in dealing with a hard diagnosis that holds a grim future (that you, random person who's giving me advice, possibly doesn't even fully realize). What we (I include myself in this) don't realize, is that in our well-intentioned advice, we deliver words that too often feel like judgement. Judgement that the afflicted one isn't doing what s/he needs to do. And a lack of recognition over hours spent researching a solution. Trying to find answers. Praying for the courage to take what may feel like a big next step - in treatment, or just looking for what may be the root cause of the problem.
I take comfort hearing from another person who suffers vertigo attacks. There's usually an instant kinship (as long as they don't too quickly dispense advice - lol). Just interacting with someone who understands the ordeal is welcome.
While it may feel slightly comforting the first time I hear that "so-and-so" also has Menieres, or struggles with vertigo, after a dozen or so times of hearing it from second-hand sources it takes everything in me to be gracious about the now redundant information. Please forgive me when I'm not gracious.
This has become quite the long post. Or vent, if it comes across that way. I think it's been something of emotional therapy for me.
I'll wrap this up by expressing relief that another vertigo episode is moving behind me, mixed with feelings of dread that another episode is hiding somewhere on the murky horizon.
I've had my itty bitty pity party of once again being caught in the quagmire of wondering if this is the type of vertigo I might benefit from therapy for (therapy, which frankly means going back into vertigo in order to be brought out of it - a therapist moves your head into positions that will bring on the vertigo, and once s/he has located the correct ear and determined the ear canal that needs treating, might be able to dislodge offending "crystals" and make them go where they belong - and hopefully, sooner rather than later, the dizziness and "jello-head" will stop.)
Or, this could be the Menieres-onset type of vertigo that simply needs to run its course. From my experience, regardless of which type of vertigo it is, it runs its course. So far, it always has. It seems to be again...