My nightmare began six months ago. Nightmare is the only word I can use to describe the living hell I’ve been going through. Growing up I’ve always heard the expression, “I wouldn’t wish that on my worst enemy”. Well, that expression couldn’t ring more true than now.
I want to start by saying that I work in an office environment that is not the best kept. It’s one of those office park buildings where there are no windows, a bunch of cubicles and lots of florescent lighting. It was during the winter season that my officemates were constantly getting colds, sneezing and coughing. At the time, the person to my right as well as behind me were the sickest. Unfortunately, I caught the “bug”.
That weekend I recall feeling like I had the flu. My body ached from head to toe. I stayed in bed resting, feeding myself over-the-counter medicine to kick this thing. By Monday, I was at least able to function, get dressed and head to work. There, with a box of tissues and my keyboard, I pressed on. The sneezing and coughing co-workers trotted along, too. Finally, 6:30 pm and time to go. I got home, grabbed my green blanket and hit the couch.
Tuesday, January 18th. It was about 4:00 am and I woke up, still in the same position I was when I laid down. I opened my eyes and did not expect to see the room spinning. I have to mention that for years I would get these bouts of dizzy spells, lasting a minute or two. They were sporadic at first, than grew in frequency. Around Thanksgiving, it was happening several times a week. By January, almost daily.
I got off the couch and headed for the bathroom, thinking that it would pass just like the other times. Something was different…very different. I noticed that I could barely walk, veering to the left as I made my way down the hall. Immediately, I started vomiting. That never happened all the other times. I broke out in a sweat, sat there and waited for it to stop. Nothing. On my hands and knees I waited, vomiting until I was completely empty inside. I remember being home alone that night, and what’s worse than being sick, alone, and scared?
I went into bed and hoped it would pass. The spinning was violent, like a spinning I never felt before. Even with my eyes closed I could feel everything moving to the left. 6:30 am came and time for work. There was no way I could move, let alone sit at my desk for 9 ½ hours. I called in sick, and laid there stiff as a board. My partner got home from an overnight shift and was shocked at the way I looked. I needed to stay hydrated, but trying to drink water was not happening… Nothing stayed down.
By day two we went to my GP. He said it was the flu and gave me an antibiotic, some meclizine for vertigo and said I have to wait it out. It will pass. I never recall being so sick. I barely made it to his office. The ride, which is only a mile or so, felt like it took hours. As soon as we parked, I vomited. I needed assistance walking to the door. Still, everything was moving to the left. Once I got into the examining room, I had to lie down and close my eyes.
I remember not even being able to take my medicine, simply because I could hold a thing down. By the next night, my partner took me to the ER. Thank goodness it was empty, and they took me right in. I have to say that the staff was great. They began working on me immediately. IV, medicine for vertigo, blood work, EKG, you name it. The doctor came in and said that they wanted to do a CAT scan of my brain. Hearing that, I feared the worst. My partner just had surgery to remove a kidney two months earlier. What was going to happen to me?
Hours went by, which, to me, felt like only a minute. I was surprised when they said I was ok to go home. What??? Nothing had changed, except for the fact that I was no longer dehydrated and I had to pee really badly. The ER doctor wanted me to go see my GP again in the morning, which we promptly did.
The CAT scan results stated that there may be an Arachnoid Cyst in the back of my head, so the doctor gave me a card for a neurologist associated with the hospital. Fearing the worst, I went home and hit the bed. I was still feeling dizzy. Not the violent dizzy that I was experiencing, but dizzy enough that it was a chore getting up to go to the bathroom. I remember lying there several times debating with myself if I could get up or not. Should I hold it and not deal with moving? Good idea.
It was around this time that my GP had me go for an MRI which was needed for seeing the neurologist.
I let a week pass, and still the heaviness in my head was there. I felt drugged. The brain fog. I could only be up for a few minutes before I would need that comfort of my bed. Being up took all the energy out of me. I wasn’t even able to look in the mirror. Lifting my head was difficult as I couldn’t focus and made things worse. I finally had the courage to call the neurologist and was able to get an appointment for the next morning due to cancellations from the snow storm that was happening. I was more than scared, but I had no choice.
Off to the neurologist with my friend Susan. Susan took one look at me and couldn’t believe that I was so sick. I could barely walk, was so stiff, lost weight and was white as the snow. The doctor did a thorough examination, read my CAT scan and said my sickness had nothing to do with the cyst. He told me not to worry about it, and that I would be better on Monday. He diagnosed me with Vestibular Neuritis. Thinking that he was right, I felt somewhat relieved. Great…better by Monday. This was Friday afternoon by the way.
Monday came, than Tuesday, than before I knew it another week passed. I still felt exactly the same. Drugged, could barely walk. What was happening to me? I called him again and he said, ok, it will be gone in two days. Nope. Was this guy nuts? This is when I became my own doctor. I do not recommend this for everyone, but I had to do something. Doing the best I can with a spinning head and my iPhone, I did research on Vestibular Neuritis. I finally found a site that described exactly what I was going through, how it happens and the recovery process. Was this it? The site said it will take a few weeks and everything would be fine. That was not the case for me. I couldn’t even walk right, let alone drive. (I was unable to get into my car for 6 weeks.) I had to remain hopeful. At least I knew what I had.
I decided to find another neurologist because those false dates pissed me off. So, off I went. This neurologist did the same testing that the first neurologist did, but took the time to explain what the vestibular system did and how this illness took hold of me. His summation was Vestibular Labyrinthitis, because he felt I had some hearing loss. I knew that I did, too. He suggested I see a specialist that deals with vestibular disorders. One of the names was a doctor at the Neuroscience Institute at JFK Medical Center in Edison, NJ. Sounded like the right place to try next. So I did.
I went to my appointment and met with the nicest doctor. He did a number of tests and confirmed that it was probably Labyrinthitis. We needed more testing to be positive. One of the things he did do was called the Eply maneuver. This is a treatment for BPPV (Benign Paroxysmal Positional Vertigo) which is dizziness generally thought to be due to debris which has collected within a part of the inner ear. That didn’t help too much. He gave me a prescription for a battery of tests at JFK Medical Center, and also for vestibular rehabilitation at Kessler. I was again assured that it would go away soon.
The following week I checked into the medical center for a day of testing, including the rotary chair (really fun stuff), hearing tests, Electronystagmography (ENG) testing, Vestibular Evoked Myogenic Potential (VEMP) testing, and Computerized Dynamic Post urography (CDP) testing. Sounds like big stuff, but it wasn’t too bad… well, except for the chair. Waiting to get the results was driving me crazy. Finally, I got them.
I have BPPV in my right ear and Vestibular Labyrrinthitis in my left. My left ear is only functioning at 29%, and the other is 90 something. That was a shock to me, especially hearing that the nerve damage is permanent. I can learn to compensate, but this is what it is… Wow.
I started PT a few weeks later. I was scheduled twice a week at 7:00 am. Working with one of the best in the area for Vestibular disorders, I must say that this place was a lifesaver. My therapist was amazing, and gave me the encouragement to push through, even when I wanted to give up. One of the things he helped me get over was the fact that I was being too hard on myself. I needed that desperately. I felt as if this handicap was never going to end.
I’m still going to PT to this day. I’m going to continue to go until I no longer need it, can balance myself at the end of the day, and not be so tippy. One of the strangest things this has left me with is what I call the “J” and the upside down “C”. No one can really explain what this is. Every time I move my head up, everything I see moves in a “J” formation. When I tilt my head to the left, everything I see moves in a “C” shape. Driving is still a bit much. Don’t get me wrong, I can drive, but not for too long without going batty and wanting to vomit. Going over bumps makes me feel like those silly bobble-head dolls you see in peoples’ cars. Ever since I got this, I hate those things! Can’t even look at them.
I have to be dead honest. At times, I just want to cry. I cannot believe that such an illness like this exists. It’s a constant feeling in my head, either like a brain fog at times, wobbly, or just pressure. The weather has an interesting effect on it, too. On rainy humid day, I’m more out of it. Sometimes going to public places like the supermarket makes me ill. It’s such a bizarre feeling inside, yet no one on the outside has any clue…
I want to share my journey through this disorder together. This is a perfect and healthy way for me to get this out. I’ve always found my fulfillment in the creative, like acting, making movies and writing. I have to admit, it has affected the acting a bit. I’ve done 2 movies since I got sick in January. The first was a small role in a slapstick comedy where I got to wear over $75K worth of jewelry. Don’t ask…you have to see the movie (The Grand Theft). While filming, I was given some line changes, and for the life of me, I could not retain what the hell I was supposed to say. I got threw it without anyone noticing, or me messing up a take, but it was disheartening to say the least. I was hoping that it was because I worked at my job all day, and then drove two hours to central Long Island for a 10 hour shoot. Maybe…
I then got a call to do some additional filming on a movie I did last September. This one is a mixed martial arts movie. Of course, I play the sidekick who gets beat up, kicked, punched, and thrown about. One of the things I had to do was get flipped on the floor by the main character who happens to be autistic. The director worked with me to make it as realistic as possible without too much “flipping”. Sorry, I wasn’t up for getting picked up over someone’s head and body slammed. Thank goodness we got it in the can in about two or three takes. I saw it recently at a film festival and it looked great. You can’t even tell I am sick. Is this what people on the outside see? Yes… On the inside, however, it’s completely different. Here, too, I had a hard time remembering lines.
I’ll do my best to update this blog on a regular basis. It’s helping me get this out of my system. The biggest thing that I want to get across is that if you have this, you are not alone. You are not crazy. You are suffering with the same thing I am. Together, with support, we can go through another day.
