Spinning Out: My Invisible Disease

The first time I heard the term, “vertigo” was in the 2004 U2 hit. I wasn’t a huge fan of the song then, so it came as no surprise that I automatically cringed when my primary care doctor told me I had vertigo two years ago.

It started one day after a spin class. I normally went to spin at least once or twice a week, so it was part of my weekly workout routine. Most times I would be light-headed and a bit dizzy after class because it is such an intense cardio workout, but I never thought anything of it because it always went away after a few minutes. That all changed after one class in early November of 2014. I remember thinking it was weird that I was dizzy when I went to bed that night, and woke still feeling light-headed and dizzy when I woke up the next morning. I’m sure it will go away later today, I thought. But then I woke up the next day and was still dizzy. And the day after that. And the day after that.

Finally after about a week of feeling dizzy I went to the doctor. I told her how the dizziness started, and that I felt like I was constantly swaying even when I was standing completely still; I found it very difficult to walk straight and had a pounding headache at times. Almost immediately she told me I had Benign Paroxysmal Positional Vertigo, or BPPV. My doctor explained to me that this type of vertigo is triggered by movement, which is why it started to bother me after my spin class. Sometimes too much movement causes crystals to get loose in your inner ear, which sends signals to your brain that you are off balance. I almost chuckled to myself as she told me this — I had no idea vertigo was something people actually suffered from, or that there were different types nonetheless. She prescribed me motion sickness medication to help with any nausea I had from the dizziness and told me I would need to go to just one or two sessions of vestibular rehabilitation therapy (VRT). This would help train my brain and joints, the other parts of the body’s balance system, to adjust to the off-balance feeling signals from my inner ear. It seemed pretty straightforward to me, and I was excited that I would be cured after only just a few sessions.

My first day of VRT I had an evaluation with a physical therapist. He had me do a few different head and balance movements before informing me that I would most definitely be needing more than one or two sessions. In actuality, I needed to come back come back twice a week for six weeks. Great. At $30 a pop on an entry-level salary in the city I think it’s safe to say my wallet was not happy about this. Determined that the VRT to cure my vertigo, I kept up with my physical therapy sessions very regularly, also making sure I was keeping on track with any home exercises I was told to do. Some days I wasn’t too dizzy, but other days I felt like I was going to fall over because some of the exercises would set me off. My physical therapist said this was normal so I pushed through it and hoped for the best.

By the end of the six weeks I was feeling a lot better. My dizziness was almost gone completely, and I was able to participate in light aerobic activities. Then, a few weeks later, the vertigo came back worse than ever. I woke up feeling nauseous and felt like I was swaying back and forth; when I opened my eyes and tried to look around my room but could barely see because my vision was so blurry. Hoping it would pass I made the trek into work that day, but as soon as I sat down at my desk I was convinced I was going to fall out of my chair. I went to the bathroom to try to pull myself together when the entire room started spinning. As I tried to walk out I crashed into one of the bathroom stalls, grabbing at the stall door to prevent myself from falling straight to the ground. It was one of the most horrifying experiences I have ever had, partly because I didn’t know what caused the episode and partly because there was nothing I could do to stop it. Unsure of what to do, I called my parents hysterically crying, trying to explain what was happening to me in between spouts of heavy tears. They immediately told me to go to the hospital to get checked out, thinking that the hospital would have to run some tests when to figure out what the problem was. I had a coworker help me walk outside of the building and hailed a cab to take me to the closest hospital.

Once I was checked in, I explained all the symptoms I had been having to the nurse. I told her that I had been experiencing symptoms for over two months, and at this point the vertigo had become so unbearable I felt that I needed to go to the hospital. Shortly after, she returned with the doctor. He tried to give me more of the motion sickness medication my primary doctor had given me before, but I told him that it hadn’t really worked that well for me when I had taken it (which was true). So instead, he injected me with valium, told me he would not be doing any additional tests because my vertigo was not considered life threatening or an emergency, and left me with a $500 bill for coming in. After the valium high wore off I sat there for a bit in a state of shock. How did they know my problem wasn’t life threatening? What if I had a tumor? Cancer? What if I had a disease or illness straight out of an episode of House that was causing me to be so sick? They hadn’t even bothered to check. I felt like I was just a patient number to them, not a real human in pain.

I spent the weekend in bed recovering, taking the extra valium the hospital gave me whenever the room started to spin again. As soon as I woke up Monday morning I called my primary doctor and told her what happened. She realized that my issues with vertigo was worse than she thought and got me an appointment with an ENT the next morning. Doctor number four.

As I explained all of my symptoms to the specialist at the appointment the next morning I felt like I was having déjà vu. At this point I was a pro at knowing how the vertigo affected me and how I felt before, during, and after a spell. I went on to tell the ENT that my primary doctor told me I had BPPV, that it had seemed to be getting better with physical therapy and then got so bad I had to check myself into the hospital.

“Okay, so what tests have the doctors done so far,” she asked.

“My primary doctor took standard blood tests, but that’s it. Everything looked normal.”

“….So you’re saying your doctor diagnosed you with something, and didn’t test you for anything before that?”

She had an appalled look on her face as she made a note on my chart. I hadn’t even thought about the fact that my doctor didn’t check me for anything before diagnosing me with vertigo– she just told me what I had and I blindly believed her without asking any questions or having a doubt in my mind.

The ENT ordered a series of tests for me to cancel out any inner ear issues, as that is what she thought was causing the problem. She told me to get a CT scan, MRI, blood tests, hearing test, and an ENG. After the tests were completed I was to come back in to get my results, and was not allowed to exercise in the meantime because that is what triggered my initial spell.

Within a week after completing all of my tests I was back at my ENT’s office, eagerly awaiting my results.

“Everything came back normal.”

I had never been so disappointed hearing that statement before. I wanted her to find a problem so that I would know why I was getting so dizzy and so that I could fix it.

“To be honest I am not sure what is causing this. I really don’t. The MRI showed that your right temporal bone is thinner than your left, which may cause some dizziness when your blood pressure rises during high aerobic activities such as spin class, but I’m just guessing. I’m not sure.”

She stared at me for a minute with a puzzled, frustrated look on her face.

“I am going to keep your case open. If anything continues to happen, feel free to come back. Or you can try going to physical therapy again. Maybe at a different place this time.”

I was most definitely NOT going to physical therapy again. Between my original physical therapy sessions, hospital visit, doctors’ visits, and all of the tests I had done I had almost completely drained my bank account, so there was no way I was going to spend even more money on something that didn’t help me that much in the long run again. Luckily, my vertigo hadn’t been too bad for a while, so I thought I was maybe going to be okay. My ENT suggested trying a low sodium diet, as that can sometimes trigger vertigo, so I made that lifestyle change.

Three months after being relatively vertigo free, it hit me again. Over the summer I had three spells, each lasting for at least one to two weeks. Each day that passed during the spell the vertigo got better and better, so I was able to work and power through it. However in late August, it hit me even worse than the time I went to the hospital. In addition to the room spinning and me feeling sick, I now had severe brain fog. I felt like I was constantly high on too much caffeine, could barely think, and was suffering from short term memory loss. Someone at work would tell me to do something and two seconds later I would forget what they told me. I found it hard to concentrate, getting distracted very easily. Then one day, I couldn’t speak: I opened my mouth, and words wouldn’t come out. I could barely form a sentence — it was almost as if I was having a stroke. In a state of panic, I called my primary doctor asking for a referral for a neurologist. I made an appointment, but they unfortunately could not see me for a few weeks.

After I explained my symptoms to the neurologist at my appointment he was dumbfounded. He couldn’t believe that nothing had shown up on any of the tests I had done so far, and had me take a series of balance tests to make sure my joints were okay and as well as an MRA. All of these tests turned out to be normal, just like the others. When I re-explained my symptoms to him in my follow-up appointment, he said he thought I may have a vestibular migraine, which is when you get vertigo along with a migraine or have headache-less migraines and just vertigo as a symptom. He was wary about this diagnosis, however, as neither I nor anyone in my family had any history with migraines, which is very uncommon for someone with vestibular migraines. He prescribed me a beta-blocker and gave me a list of foods I could not eat, including red wine, chocolate, nuts, caffeine, dairy, and gluten. I immediately cut all of those items out of my diet to see if it made a difference.

After a few weeks on the beta-blocker, I did not see much of a difference in terms of the daily dizziness I would often get in between vertigo spells. When I told this to my neurologist, he switched my prescription over to an epilepsy medication. I was a bit nervous to take this, especially seeing as one of the possible side effects is getting kidney stones, but soon after starting this medication I saw improvement: I found that the combination of the medication and the dietary change had a strong impact on my vertigo spells. I did not get them as often anymore, experienced less dizziness when I was exercising, and, when I did have a spell, and it only lasted three days. THREE DAYS! That was almost nothing in comparison to the weeks I would have it before.

Two and a half months passed after my latest spell and I was completely dizzy free. I was ecstatic, even starting to think that I wouldn’t have to suffer anymore. The very next day after I thought this it came back, and this time it lasted longer than three days. In fact, I am writing this article in the middle of the spell that has gone on for a month now and is not showing any signs of letting up soon. My neurologist still could not figure out what is wrong with me, so he referred me to another doctor, a neurotologist, which specializes in dizziness and vertigo in hopes that he will be able to diagnose me. I have been waiting for this appointment for three weeks, have had to miss some days of work, and have been unable to see my friends because I have been bedridden the majority of the time. And, when I have been able to leave my apartment, the brain fog the crashes down on me has been preventing me from being able to hold a decent conversation. While I have been waiting for my doctor appointment, I have been experimenting with eastern medicine to see if that would make a difference for me, including Reiki and acupressure massage. So far it seems to be helping, maybe even more than the medication has.

Aside from actually having the vertigo spells, the most frustrating part of this illness is that it isn’t something anyone can see. Even though I feel like I am moving and am about to fall over, to a third party I look like I am standing still or walking straight. No one can see, feel, or experience the constant state of dizziness and spinning going on inside my head, making it difficult to explain and diagnosis. I have spent countless hours doing research on vertigo and its causes, even turning to online forums to read about other patients’ diagnoses and experiences. The conclusion? Almost anything can cause it. A stiff neck. Tight muscles. Meniere’s disease. A tumor. Stress. Certain foods or drinks. Exercise. Literally, it could be anything. And that is what makes it so hard to diagnosis — unless something concrete shows up on a test, a doctor will never know what is truly making you sick, causing the patient to experience it over and over and over again with no relief.

When you have chronic vertigo to you live in a constant state of fear — fear that you will eat, drink, or do something that will cause it to come back; fear that you will lose your job if you miss too many days of work for being sick, or from making a mistake while working under brain fog. And when it does come back you get stuck in an endless cycle: you get upset, stressed, and depressed because you don’t know why it is back or how long you will have it, which makes your symptoms worse. So then you take motion sickness medication or valium to help calm the symptoms, but that makes you tired. All you want to do at that point is drink caffeine, but you can’t, because that makes it worse. Instead, you have to power through the day, most likely at work staring at a bright screen under fluorescent lighting (also something that contributes to the severity of vertigo), before going home and going to bed immediately. But, because you go to bed so soon, you skip dinner, which also makes symptoms worse. It’s a vicious cycle that makes it trying to truly recover from a vertigo spell.

I am not writing this so that people will pity me, or feel bad for me in any way. I am writing this to share my story, and raise awareness about what it is like living with a vestibular disorder. So many people suffer from this illness but many of their peers do not realize it because it is something the naked eye cannot see. Being told over and over and over again by multiple doctors that they cannot find something wrong with you when you know there is a problem is one of the most frustrating, upsetting things that can happen to a person. You start to wonder if it is all in your head, thinking that maybe if you try to ignore it the vertigo will just magically go away on its own. That never works. I have read countless stories of people having to retire early, people who unable to ever hold a full-time job, and people who are bed-ridden for weeks just from having vertigo. I have been fortunate so far to work for companies that are accommodating to my illness, but what happens when it gets so bad I can’t walk for a week instead of a couple of days? What happens if I decide to work for a company one day that might not be so flexible? Then what?

I refuse to believe that doctors cannot find a cause or fix for something that affects so many people, and no other vertigo sufferers should settle for that either. We need to demand better.