I went into some detail in my last entry about it, but not too much. So...
In 2006-2007, I started getting really dizzy and experiencing tinnitus during the day, and had crazy vertigo at night when I was trying to sleep. I went to the doctor who referred me to an ENT. The ENT looked in my ears, talked to me, and diagnosed me with Meniere’s Disease, a disorder of the inner ear. He said the final thing he needed was a hearing test during a vertigo attack, but at the time, the attacks were only at night when no machine or tech was available. He sent me on my merry way.
I went home and researched Meniere’s and while most of it rang true with me, I didn’t feel like I had hearing loss. But he said it was coming, and that scared the living shit out of me, because hands down, I would rather be blind than deaf. Music has such a huge impact on my soul; the thought of losing that was horrifying.
So eventually the vertigo at night pretty well fades away, but the dizzy spells randomly throughout the day continued, plus started peppering in some daytime vertiginous spells. But I dealt with it, just as I dealt with the migraines or tension headaches almost daily, which I have lived with since I was about 7), the fatigue and body aches all the time, joint pain, and all the other shit I live with. It became my normal. I was used to it, though I didn’t like it, nobody could find anything wrong with my lab tests, so clearly I was fine. *eye roll*
Fast forward about 10 years and my PCP (an Internist and the only one who paid enough attention to my symptoms as opposed to my test results, which were always either fine or borderline, and who has since left practicing in his clinic) told me that he suspected I have Secondary Hypothyroidism, and that he wanted me to see an Endocrinologist.
So I went home and I do what I do - I studied it. It was NOT easy to find information on, let me tell you! But what I could find is that a common diagnostic tool for this condition is a brain MRI. I wondered if having one done ahead of time would be a prudent idea, and I don’t remember if I brought it up and he said to see what they wanted to do, or if I just thought about it a lot. I hate that I can’t remember. Not that it matters.
Well, I never did see an Endocrinologist. Life got in the way and I lived with it. It was in the back of my mind, and occasionally I would make steps toward doing so (usually from a push from Kelly), but I never was able to go.
In the mean time, in July of 2016, my dizzy spells and vertigo took a sudden sharp increase. They went from maybe once or twice every day, but for about 5 seconds each, to every few seconds, lasting a few minutes each. I am quite stubborn and it caught my attention but I held off on seeing a doc. I needed to drink more water, I figured, so I did. And it still happened. Well, I must be eating too much salt. That’s it. It’s just the Meniere’s flaring up. Cut the salt and it still happened. Fuck.
But it wasn’t until it happened while I was driving (first time) that I freaked out. It happened twice in as many days and I got really scared. Becca made me promise to see Bee (my new PCP) about it. I did, begrudgingly. She asked me about the Meniere’s and what the ENT put me on for it. I looked at her blankly. “Nothing.” She was appalled. I told her I had no idea there WAS anything I could take for it. Shit, I would have asked about it!
She put me on Meclazine (my THIRD antihistamine daily) and wrote me a referral to see an audiologist. The thing is that the Meclazine pretty much brought me back to baseline for me, so I didn’t know if a trip to the audiologist would even be beneficial. I called their office to discuss it and they said if I was asymptomatic, there wasn’t much point in it, and to call back if I felt worse.
I told Bee and she said fine, for now, but get in to see them anyway when you can. Life happened and the next time I was able was in January. Bee made it clear I had to see them before she would do another refill on the Meclazine, which was making me feel somewhat functional. This scare tactic worked. In I went (amazingly, I was able to get in within 3 weeks, which - for a specialist - is shockingly quick).
We chatted about my symptoms and the audiologist did several hearing and ear-pressure tests. After that portion of the appointment, she said that while it isn’t her place to make or disprove the diagnosis, she truly doesn’t feel that I have Meniere’s.
She also said (to my great relief) that my hearing was really good (averaging 98%!).
Then she took me to a darkened room with an adjustable exam table. She had me sit on the table with my legs hanging over, looking at this long, thin LED light bar affixed to a stand. Kind of like this set-up, except I was on the exam table.
So she put these Virtual reality-looking goggles on my head that have cameras that watch my eyeball movement. I did secretly wonder what my eyes had to do with an audiology appointment, but it turns out there is a fascinating neurological link between the two, in addition to their close physical proximity.
The goggle cameras watched my eyes while she had me do several tests, all of which required me to hold my head and neck still and use only my eyes (or, for the last four tests, don’t do anything but lay still). First I sat up on the exam table and watched the light bar as a single light scrolled back and forth. It was a red dot and I thought about my cats LOL Then the light jumped around. The bar was then moved vertically and the tests were repeated.
Then back to horizontal. For the next test, it had multiple dots evenly spaced and scrolling from one side to the other rapidly and I had to try to count them. The number didn’t matter, she said, just my eye movement doing so. Then I was to choose a dot at where it originated and follow it until it disappeared.
Then she closed the lid on the goggles and had me look straight ahead for 10 seconds, then all the way to the right (I could feel the nystagmus when I did so), then back ahead, then all the way to the left (again, I could feel the nystagmus). She moved my head into several different positions, each time repeating this sequence, then moved my body into several different positions, again repeating the sequence with each. She adjusted the neck part of the table upward and repeated the testing.
Then came the weird part.
I heard an air compressor come on. She explained she would be sticking a tube into each ear, respectively, with cold then warm air. So right cold, left cold, right warm, left warm. Each exposure to the forced air would last 60 seconds and it would induce vertigo. She said the symptoms would resolve in a few seconds. I had to keep my eyes open the whole time (save natural blinking), and in between each test we would play a simple alphabet game to distract me from my vertigo.
In went the tube. The cold air felt so weird! And about 10 seconds in it hit me. I grabbed onto the table to keep from falling off the earth. I could definitely feel the nystagmus. Holy shit. She asked me for girls’ names starting with A, then B, then C, etc. I struggled a bit to concentrate but made it through. We got to M and a tiny light in the goggles turned on for me to look at and focus on to help stop the nystagmus. It was hard to focus on it at first, but it did help. I didn’t have any access to a clock, but it felt like it was about 2-3 minutes before we moved on. My vertigo stopped just in time...
On to the left side for cold air. And same thing, about 10 seconds in, BOOM! Oh shit! Clutching the table. The timer and air go off and she asks me for boys’ names starting with A, B, C... etc. I was more disoriented this time and struggled some, but made it through. This time took me longer to recover. Maybe 3-5 minutes?
Next came warm air in my right side. She said it would invoke the same reaction. The air starts and all 60 seconds go by... without vertigo. I didn’t know if this was a good or a bad thing. The timer went off, she pulled the tube out, and BOOM!!! Oh shit... this was worse than the other two combined! I thought I might throw up. She asked for city names starting with A, B, C... I struggled HARD with this one. I was so disoriented! I got to F and said “France... wait... that’s a country... shit... F... Franklinville. There’s probably a Franklinville somewhere... yeah...” and for G “Georgia. Wait, that’s a country too... and a state... G... I don’t know. I just don’t know.” This one was definitely longer to recover. Well over 5 minutes. I wasn’t completely recovered from it when it was time for the last one.
Thank god it was the last one. Jesus.
Warm air, left ear, and I had no idea if it would act like the cold and be 10 seconds in and zoom, or nothing until pull out and then holyshitzoom, or what. With 10 seconds to spare, my life got flipped turned upside down... I wildly grabbed for the wall with one hand and clutched the table with the other in a desperate attempt to stabilize myself. This time she had me count up by threes. “Oh dang it, why does it have to be math? I’m... crappy... at m... math...” I managed to slur. I could barely control my brain, and it was frightening. I heard the words coming out of my mouth and knew some numbers were wrong. It was as if there was a disconnect between my mouth and anything else. I repeated a few numbers. She finally had me stop. Thank god. The light came on in the goggles and I could barely focus on it. It almost made me feel worse to see it bouncing around so. It wasn’t, of course, my eyeballs were, but hey.
I felt my limbs go cold and my mouth started watering. My eyes teared up. I was going to vomit. I took a slow breath in to compose myself and quietly asked “If I have to vomit, where do I do so, please?” I could hear in her voice she was startled as she said, “Oh no! They just moved us into this room today and haven’t moved in a trash can or any bins! Eek! Try and hold it and I’ll see if I can find anything! Keep breathing deep like you have been!”
SOMEHOW I managed to not throw up. I’m amazed. But this is why they have you go NPO! My recovery time for the fourth one was substantially longer than the others. It was a much stronger reaction, too. I apologized for taking so long to recover and she told me it was perfectly fine, to take my time, and that she didn’t have anyone else scheduled that day. Again, estimating time, I probably lay there for a good 15-20 mins before feeling like I could turn on my side toward her. I took a chance opening my eyes and it was ok.
She rolled back a little on her chair to come into my field of vision and discussed the findings with me.
“The good news is that your hearing is great and your ears are doing really well. Your right side is really close to being considered having a weakness, but it’s right on the border.” “Story of my life, doc. It doesn’t matter how bad I feel, I will test either within normal ranges or borderline. Ugh.” I said. “Well, your left ear is over-performing by about that same amount, so that tells us you may have some equilibrium issues since the ears are sending feedback to the brain at different rates, which can throw everything off.” Then she explained the nystagmus. “When I had you look all the way to the right or left, your eyes did something we call beating, a type of nystagmus.” She went on to explain that it was an abnormal reaction, indicating that the issue isn’t in my ears, but... my brain. She hesitated slightly as she said it.
“I know it’s scary to hear!” she said apologetically. “Eh. Everything is controlled in the brain in one way or another, right? Besides, I’ve thought there was something askew up there for a while now.” I replied, keeping cool for her benefit. “That’s a good way to look at it!” she said; I could hear relief in her voice. “So we refer to it as a central processing issue. Basically, up in the brain. You need to get to a neurologist. I wish I knew more about it to tell you, but you do need to get referred to a neurologist. What’s interesting about this is that the patients who have this also tend to have a history of migraines.”
I’ve had those since I was 7. Huh.
She showed me a video of my eyes during the testing. Cool! I asked her for a copy of that video emailed to me. She said she will do so. She also said that it’ll take her a week or so to complete her report and send it to my PCP, but when it comes through, to see a neurologist. We talked about available neuro docs in the area.
By this time, my head was pounding (it started hurting at the first air test and progressed) and I took some Tylenol. I probably stayed in there with her for another 5-10 minutes chatting before she asked if I was OK to try standing. I said I was, and we carefully stood me up from the exam table. She walked me to the front door and I thanked her again and headed out.
When I got to the parking lot and sat in my car, I allowed the shock to hit me.
“I have a problem in my fucking BRAIN....” I mused aloud, astonished. A million questions flooded my consciousness immediately, and I refused to allow myself to acknowledge or answer a single one of them. First things first... call Chris.
He was asleep and I woke him. I chose not to tell him everything now; he would have bad dreams while I was on the road. I’d wait. Instead I asked him what to bring home for dinner. I then went shopping and got lunch and dinner and headed home.
After eating, I allowed myself to think a little bit about what happened. It was time for copious amounts of research when I got home.
I got home and sunk onto the couch. Chris and I then talked about all that happened as he prepared dinner. I could tell he was startled but being cautious about letting himself react.
Then he made a joke about it really actually being all in my head and we laughed. I love that he knows how to make me laugh when I need it the most. I have a feeling I’m going to need that in the coming days going through all of this.
