During yet another hopeless search through the medical literature, at long last, I found a description of my vestibular symptoms. I could hardly believe it. I was so relieved, I almost started weeping. After all these years, maybe, just maybe, I can get a diagnosis and maybe find a treatment.
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This particular phase of my chronic dizziness has morphed from BPPV and maybe vestibular migraines (I'm not sold on that idea) into something called vestibular paroxysmia. My symptoms are as follows, in case you know someone who has this weird and annoying malady:
- recurrent (for me, that means occurring every 45 to 120 seconds, it could be different for other people)
- spontaneous (I cannot trigger it, but I can make it more intense by moving my head)
- postural vertigo (some people have rotatory vertigo, which would be the absolute pits)
- 10 to 15 seconds in duration (others might have shorter or longer duration)
- Accompanied by ear crackling in right ear (others may or may not have some kind of tinnitus)
My head is possibly affected by changes in air pressure (causing narrowing and widening of blood vessels). That is why I went on that epic roadtrip searching for a place at low elevation that might have less variation in air pressure.
The symptoms are no longer treatable with gravity maneuvers (Epley, Foster, etc.), thus, not likely to be BPPV. My hearing is not affected except for some minor hearing loss in my right ear during an attack, thus not likely to be Meniere's. Vestibular migraines don't come in recurrent waves with tinnitus.
Apparently it is a biomechanical problem stemming from a vascular compression of the root entry zone of the eighth cranial nerve. That means a blood vessel, probably an artery, is encroaching on the vestibularcochlear nerve and wreaking havoc in my balance (vertigo) and hearing (tinnitus). I always suspected it was something mechanical. Why else would the waves of vertigo be synchronized with the ear crackling? Now it makes sense. A stupid blood vessel is interfering with the eighth cranial nerve.
The nerve!
The good news, vestibular paroxysmia is probably treatable with antiseizure medication. In fact, that is how they often diagnose this illness. They give you the drug first and if the vertigo stops, then you have it. If it doesn't, well, then there are other avenues to pursue. The down side is, the drugs can have side effects, so it's kind of like testing for witchcraft by waiting for the person to sink to the bottom of the pond. Oh, well. Guess she had it.
The alternative to drug treatment is brain surgery, but I'm not going to think about that right now. Next step is vestibular testing, coming up this week. I can hardly wait. I'm so excited. From what I've read, it's a grueling, puke-inducing experience.
I can't disclose what I've learned the moment I walk in the door. As a researcher, I know I need to keep my mouth shut and not proclaim my belief that eureka, I have discovered the problem. I don't want to skew the tests. I don't want to influence their reports. I will let the ENT do his thing. Then, when he looks at me and shakes his head and says what I expect him to say, sorry, Carol, we think you need to see a psychiatrist, then I can say, well, have you considered this?
I don't have the energy to fight. Today the barometer nosedived this morning, a steep 16-point decline in just a few hours. My head has been going crazy. On top of that, an old friend of mine has dementia, and it's heart wrenching to see her struggle for words. Plus, the weather in the Sonoran Desert is stupidly, ridiculously, unbearably hot. You can see I have many things to ponder. Meanwhile, the train keeps rolling through my head every minute like someone tapping me on the shoulder reminding me I'm here, I'm still here, pay attention to me.
I can't think anymore. It's late. Tonight, the moon is full and golden. The AC is resting, so it's blessedly silent in the Trailer, and tomorrow will be another day to try it all again and maybe get it right this time.
