An Unbalanced Life
There is not much that slows me down. After breaking my foot at work, I returned to the office the next day. I use my “sick” time to tackle large projects at home that I normally don’t have time for. And I was showered and dressed minutes after delivering all three of my children, despite being numb from the waist down from my epidural. Where there’s a will, there’s a way.
My can-do attitude met its match in spring 2009, when I began feeling dizzy and disoriented. I had visual disturbances and sometimes felt like I could barely walk across a room. Certain things were especially triggering, such as grocery shopping…the lights, the stimulus- I would grab onto the cart with white knuckles and hope I didn’t crash into anything. In social situations, I became preoccupied with my discomfort. The smallest tasks, such as driving my daughter to her oboe lessons, induced anxiety that was crippling.
I was absolutely positive that I was dying of something, but avoided going to a doctor to have that diagnosis confirmed. I figured at some point, I would collapse, and then it would have to be addressed. In the meantime, I was pushing forward one tentative step at a time.
Some days were better than others. My dizziness was definitely aggravated by allergies and when I had colds or viruses. As time went by, and I didn’t die or get worse, I figured it was safe to start looking for some answers.
I went to an ENT in 2016 with hope that I would finally get some relief. When I told him that my symptoms seemed to coincide with the onset of my asthma, and that they worsened with congestion, he responded “Just tell me your symptoms, not your self-diagnosis.” Um, okay. He proceeded to tell me there was no fluid in my ear, despite the fact that I could hear it sloshing around. “My GP saw fluid just the other day,” I told him. “Who are you going to believe, him or me?” he asked. After I passed my hearing test, he declared that I had no ear issues and that my symptoms “must be caused by something else.” i.e. “You crazy hypochondriac, you just wasted my time. Now leave.” Whatever hope I had when I arrived at his office was gone. Humiliated, I retreated and decided to handle my dizziness on my own.
Living with my symptoms was pretty terrible. I withdrew as much as possible, avoiding obligations or social situations that I knew would be challenging and uncomfortable. Most people just did not understand. “Why are you dizzy? Do you have a diagnosis?” Again, sans diagnosis, it must be all in your head. My own extensive research led me to diagnose myself with vestibular migraine, and Google recommended physical therapy. This was the best, the only treatment that helped. Thank you Dr. Google. I found a Godsend of a physical therapist who was knowledgeable and patient. I always felt better when I left, and I finally had something to feel positive about. My symptoms still ebbed and flowed, but I never felt hopeless once I hooked up with Dave.
Things took a turn for the worse, much worse, when I experienced severe vertigo for the first time in winter 2018. I woke up one morning and could not lift my head at all. I couldn’t stand up or turn my head, and I was vomiting. (In one particular moment that has become the focal point of my EMDR trauma therapy, I was face down on the floor, slithering like a snake, pushing my puke bucket with my nose en route to the bathroom. “This is the most undignified I’ve ever seen Mom,” I heard my daughter say. No argument there.) I spent the entire day on the floor, and that day changed everything. In every other circumstance before, I had been able to at least stand up. I had never, ever been so helpless. This led to the creation of a “vertigo station” that includes a dog bed, meclizine, pillows, blankets and leggings/socks that I keep nearby just in case I ever wake up that way again.
About 10 days after this incident, I went to another ENT. Again, very hopeful. This one asked me a few questions, diagnosed me with BPPV, and ordered tests. He left the room so fast that I was shouting “Do you think I have some type of ear infection?” down the hall as he walked away. He ordered another hearing test (passed again) and a balance test, which was one of the worst things I have ever done. Ever. And I gave birth three times. Basically, the horrifically sick and helpless feeling I had on the floor was induced over and over again so they could measure my response. The doctor never called with results. I finally called and asked that they be forwarded to my physical therapist, who said they were “inconclusive” because I thrashed around so much. Uggh, another dead end.
I had a few more episodes of severe vertigo, and my PT said he had seen enough to determine that I had BPPV, vestibular migraine and vestibular neuritis…the Big Three. I went to yet another ENT. (The first sign of trouble…his office was on the fourth floor of a wide-open, atrium style building. I was literally clinging to the walls. Why would someone with patients suffering from dizziness and balance problems situate their office like that?) He declared that I needed sinus surgery, and when I asked if it would help the dizziness, he said “I’ve already spent too much time in here, Karen will get you on the surgery schedule.” I had also begged him to do the Epley, which he also declined because he was too busy. He did give me a diagnosis of Meniere’s Disease.
My last and final ENT appointment was one week later, at a highly recommended doctor who was supposedly good with patients. He also diagnosed Meniere’s, and declared Meclizine “a stupid drug.” (This man has obviously never experienced vertigo.) He said a low-salt diet would be all I needed to fix my issues.
The cavalier attitude of these doctors was hard to stomach. Dizziness is debilitating. I was afraid to make any plans, as I never knew when a severe episode was going to occur. As a health coach in a medical practice, I had a few episodes when I was with patients that absolutely terrified me. I began having severe anxiety about patient appointments, actually about scheduling anything. I did not want to have to be anywhere. And that was no way to live. My only saving grace was physical therapy.
I continued off and on with Dave until 2021, when he took a job working exclusively for the electrician’s union. Knowing how much I came to rely on him, he broached the news very gingerly, like it was a breakup. “I have something to tell you, but I want you to know first that I will always be there for you.” WHAT? When I was circling the drain with my vestibular symptoms, Dave was always there. Now, I was truly on my own.
So no doctors, no physical therapist…where does that leave me now? I have been reading lots of articles, mainly courtesy of VEDA. In fact, I believe I found an actual, real diagnosis for what I have…Secondary Endolymphatic Hydrops, which is like Meniere’s but less severe and usually caused by a secondary condition (allergies and viruses in my case). I have tried to lower my salt, but that is a tall order even for me as a health coach. I try to do vestibular PT on my own…the upside is I am home and safe, the downside is that I do not push myself the way a PT would.
And recently, I have begun tackling the mental component of my vestibular issues, which is huge. Anxiety became as oppressive as the dizziness, with the ever-present worry about when it would happen and how severe it would be. I began working with a therapist and started taking a half-the-minimum dose of Prozac, which helps take the edge off. Unfortunately, I have also distanced myself from the people who were rude or dismissive about my condition. I have enough to deal with, their judgements and condescension were just adding to my stress.
Having an invisible illness is perhaps one of the biggest challenges life can dole out. Since the world does not recognize it as a true illness or injury, it is dismissed as not real. And it makes you question yourself. When I broke my foot, people were falling all over themselves to help...my crutches provided all the verification they needed to know that something was really wrong. But my dizziness has made me much more impaired than my broken foot, and help is pretty much nonexistent.
I always think of a time in the grocery store when an elderly man dropped something, and looked at me like “You’re young, you pick it up.” I thought, “If I even attempt to pick that up, I’m going to face-plant right here in this line.” After a short stand-off, I picked it up, because that was what was expected of me. And that is why I never make assumptions about others, as you never know what they’re dealing with. I always call dizziness my own, private hell…it’s like being inebriated/incapacitated at a totally inappropriate time, such as at 3 p.m. at Walmart. But to the rest of the world, I look pretty normal.
And honestly, it is so frustrating to see other people on their health journeys, which end up getting resolved quickly and favorably. If you get a knee replacement, a few months of PT and you’re back up and running. For me and other vestibular patients, we look ahead knowing that our dizziness will be there, tomorrow, next week, and next year. The best we can do is to keep seeking things that work for us, to at least minimize symptoms.
I hope that someday, the debilitating effects of vestibular problems will finally be recognized and more research will lead to better treatment options. I will continue to plug away in dealing with my own symptoms, I really don’t have a choice.
And when my dizziness is severe, I don’t fight it anymore. I just wait until the gods decide to unblock my ears so I can get on with my life. I’ve been through it enough to know that flares don’t last forever.
Put it this way…the universe finally found a way to put the brakes on me, and I guess I had it coming.
