A couple weeks back I alluded to a health procedure I was about to go through and promised to share details down the road. I just wrapped up my seventh visit to a health care professional over the past two months, have an idea what is going on, and can finally give you an update on what’s going on with my body.
Sometime last fall I started feeling “different.” I was having frequent headaches, my vision was often funky, I was always tired, I had weakness in my legs, and had occasional spells of vertigo. I figured the headaches were because of new glasses, the fatigue from my sleep apnea, and the vertigo was brief and random. Put all that together and I didn’t worry about it too much. Minor annoyances that seemed to pass and I figured they would work themselves out.
By Thanksgiving they were getting more pronounced, so I mentioned them to S and asked if I should start with getting my glasses re-checked or touching base with my cardiologist. Since new glasses seemed to be the trigger, we started there. My eye doc checked my prescription and made a small adjustment, but didn’t think glasses should be causing me all those issues. I got new lenses right before Christmas and immediately everything got much worse. Crushing headaches, much worse vertigo, and a general malaise. The weekend before Christmas I pretty much sat in bed or on the couch all day because moving around made me feel so bad.
Now S was very concerned. She worked that Monday and talked to my doc on the family medicine side, who said I needed to come in right away. Because a few of my symptoms fell under the large Covid umbrella, I had to see the “sick” doc rather than my normal PCP. He tested me for Covid (negative), had some blood work done, and referred me to a neurologist. Trying to schedule with a specialist around the end/beginning of the year is a huge pain and I wasn’t able to see her until late January.
In the meantime I decided I didn’t have anything to lose and went back to my old glasses. Almost immediately the headaches went away. It took about three weeks for my eyes to adjust, but suddenly my vision wasn’t an issue. But the vertigo was still there, and pretty much a daily, constant occurrence compared the the momentary spells I began with in October.
When I met with the neurologist, she sent me to do both a VNG balance test and a brain MRI. In the VNG testing you wear goggles that track the movement of your eyes while both following moving objects and as you sit/lie in various positions while both hot and cold air is blown into your ears. Weird, right?
When I scheduled my MRI they asked if I was claustrophobic. I laughed and said, “I guess we’ll find out.” I didn’t think I was but I also had heard that an MRI tube can be uncomfortable.
I arrived for the MRI and the techs asked if I wanted to watch TV or listen to music. I figured with my glasses off TV would be useless so I asked for music. They asked if I wanted a warm blanket. That seemed silly – the room was plenty warm – so I declined. They said the tests would take about 30 minutes total. I’d do one without contrast that would take about 15 minutes, they’d slide me out, pop an IV in, and then send me back in for 15 more minutes. Seemed easy enough.
I laid down, they put the gear on my head, and slid me inside the tube. My first reaction was that the top of the tube was close to my face. Very close. I wasn’t sure I liked that very much. The techs were patting my legs to let me know that most of my body was outside and reminded me I had a button to squeeze if I needed anything. I took a deep breath. Then I thought, “I should push that button.” But that’s stupid, I’m safe and it hasn’t even been a minute yet. “Just chill out you loser.”
They called over the intercom and said they were warming up the equipment so I would likely hear some loud noises and we’d get started in about a minute. “I can do 15 minutes of this.” I thought.
But I kept having an urge to sit up, which was impossible with that wall three inches from my face. Fifteen minutes suddenly seemed like a very long time.
After talking myself down a few more times, my body finally said “Hell no!” I didn’t have a full-on panic attack, but I definitely wanted to get the fuck out of that tube. I fought it for another 20 seconds or so then squeezed the buzzer and told them I didn’t feel very comfortable.
They rushed in, got me out, and immediately began comforting me. “It’s no big deal, this happens a lot. Just have your physician prescribe a sedative and reschedule.”
I felt like a big dumbass. I think I was in the tube between 60 and 90 seconds. I texted S to let her know what happened. When she got home that night she said her partners all said, “MRI’s suck! They didn’t automatically sedate him? That’s crazy!” Where was this advice before I went in?!?!
I rescheduled for a day S could drive me, about 10 days later. I’m not exaggerating: at least five times in that stretch I woke up in the middle of the night in a cold sweat thinking about the MRI tube. I saw no way this was going to work out well.
On the day of my second attempt I took one of the two tabs of Xanax my doctor prescribed me 90 minutes before the test. After an hour I didn’t feel any different. The label said I could take the second if needed. When I told S I was still nervous she said, “Take it, you dumbass!” So I popped it and we headed to the imaging center.
Because of Covid she couldn’t go in with me and I was on my own. I’ve heard that Xanax makes some people very mellow and sleepy. Not me, I was edgy and wide awake. I did not see any scenario in which this worked out.
When I entered the MRI room, I opted for the TV goggles, hoping not seeing the tube wall would help me stay relaxed. I accepted the warm blanket. And since I had failed once I think the guys moved a little quicker than normal. I watched ESPN’s NBA show The Jump for about 15 minutes, remained calm, and survived the MRI. When I got home I took a two-hour nap. I guess the sedative effects of the Xanax finally kicked in.
Expert advice: if you need to have an MRI, ask for the sedative!
I should back up for a moment. When things got bad in December, S said she was worried that some of my symptoms were indicative of multiple sclerosis. I was worried I had a brain tumor. On the nights when my headaches were especially painful I would search for brain cancer symptoms, treatments, and prognoses. Uplifting stuff!
I got the MRI results the night of my test. It was pretty clean. No signs of MS or tumors or other red-flags. That was a huge relief.
I had not seen the results of my VNG testing yet, but my neurologist’s assistant called and shared that it showed I have peripheral vertigo. She referred me to a balance therapist. I had my first therapy session last week, and while there was told that I have some fairly significant damage to the vestibular nerve in one of my ears, and that was the most likely cause of my vertigo/balance issues. They started me on a regimen of exercises that are designed to retrain my brain to work around this damage.
What’s weird about that is I haven’t experienced any of the triggers the therapist suggested can cause this damage: a sudden, high fever; an infection; some kinds of antibiotics. And while this is not related to my auditory nerves, I also haven’t had any noticeable hearing loss in that ear. Well, aside from the usual stuff an almost 50-year-old who has listened to lots of loud music would have.
I’ve been doing the exercises three times a day. For the first couple days I noticed an immediate improvement, which seemed too good to be true. Perhaps it was a mirage, because the last three days I’ve been as off-balance as I’ve ever been.
I met with my neurologist’s nurse practitioner this morning to go over everything. She said based on the combination of MRI and VNG results, they were very confident the nerve damage was the explanation. She said she has never seen anyone fail to get better after going through the therapy process. I asked about the causes, since I had not had any kind of traumatic experience, and she said it is kind of a mystery: some people go through a singular event that triggers it, in others it appears without explanation. And it can happen in healthy people just as easily as people who already have issues.
It has been a rather strange 4–5 months. These issues all fall into the “annoyance” category rather than being truly debilitating. There are certain situations that I know will trigger things. When the symptoms kick in I feel very “off,” but it’s not like I am unable to do normal activities. They just feel very different and I have to take some extra care. While I feel off-balance, I never feel like I’m going to fall. I’ve had to cut back my workout routine a bit. Which is annoying in the winter when the extra pounds add up far too easily. I will head to Florida in two weeks at my highest-ever spring break weight.
I’m hopeful my medical team is correct on the cause and that the treatment will in fact get my brain to work around the issue so I can move beyond this.
I also had my annual check-up with my cardiologist two weeks ago. Since I had the two episodes of irregular heartbeat in 2019, I haven’t had any repeats. Or at least ones of the length that sent me in to get my heart tested. Every now and then I’ll feel my heart do something odd, but whether that is truly my Afib kicking in, or it’s just me being more sensitive to normal variances I do not know. My EKG came back clean. Blood pressure probably a tick higher than ideal, but in line with where it has been. She said to stick with my CPAP as it’s the best thing I can do to keep my heart in proper rhythm. I hate the CPAP – S really hates it – but if it keeps me healthy it is worth it.
Bottom line: getting old kind of sucks as your body does weird things. But I know I’m lucky that, so far, all my issues have been identifiable, manageable, and not life threatening. As I prepare to enter my sixth decade, that’s about all I can ask for.