My So Called Dizzy Life

My Chronicles of Vertigo, Nystagmus, Imbalance & Dizziness

Dizziness Made My Eyes Temporarily Googley…and They’ve Never Quite Recovered…

Prior to my first attack of the dizzies in May 2012, I did not have trouble seeing nor did I wear glasses.  When I was growing up, all I wanted were glasses!  I know, not usually something that you hear kids pining for.  (What can I say?  I’ve always marched to the beat of my own drum.)  To my great disappointment, every time I went to the eye doctor I had perfect vision.

When I had gone to my ex-primary care physician in June 2012 complaining of headaches, dizziness, and trouble getting my eyes to focus, she suggested that I needed to make an eye appointment. (Read more about that horrible doctor appointment here.)  Next thing I knew, I had glasses and my perfect vision went out the window.

After I came down with a case of the dizzies, and as a part of my Vestibular Rehabilitation Therapy, my physical therapist gave me exercises designed to help improve the focus of my eyes.  I performed eye exercises designed to retrain my brain.  These exercises helped and, eventually, I improved.  I became much better at tracking objects with my eyes.  Even better, after months of checking the mirror every morning,  I no longer had nystagmus.   But still, I questioned every doctor about my eyes because they felt so different.   I kept reporting to any doctor who would listen (and even to those who wouldn’t) that my eyes and vision felt strange.  No doctor seemed to think it was that important.  I began to question what my eyes were like prior to the dizzies.  Wasn’t I always the one who could read from far away?  Or maybe I couldn’t remember that I had trouble reading words from a distance?  Were words blurry before?  I doubted myself.

In December 2012, my husband went for an eye appointment with a doctor he had been seeing since he was a kid.  During the appointment, the subject of me and my dizzies came up.  My husband’s doctor kept asking him questions about me and, surprisingly, he knew all about vestibular neuritis (by this point we were quite used to having to explain what it was…even to those in the healthcare industry!)  As luck would have it, this doctor was no ordinary Ophthalmologist.  He is an Ophthalmologist who has experience dealing with patients who have Vestibular Disorders and whose area of expertise includes visual rehabilitation!

I was able to get an appointment with this doctor in early January.  It was one of the best doctor’s appointments I’ve ever had.  This doctor understood what I was going through.  He didn’t discount me or what I had been experiencing.  He believed me!   It wasn’t all in my head!

As a reminder, balance is achieved by using input from the following: 1) the Vestibular System; 2) Proprioception (the sense of the orientation of one’s limbs in space, in other words, your sense of touch and the feeling of the ground beneath your feet); and 3) Input from your Vision.  I already knew at this point that I had a non-functioning right vestibular system.  I also already knew at this point that I had uncompensated vestibular neuropathy (more about that here).  But now I had a doctor confirming that I had become overly dependent on my eyes as a result of my vestibular disorder.  The Ophthalmologist gave me a lengthy written report of my examination, which states the following: “Emily has history of vestibular hypofunction following vestibular neuronitis of the right ear.  She has visual oculomotor dysfunction, convergence insufficiency with visual motion hypersensitivity.  She appears to have developed visual dominance after her above vestibular disorder.”

AH-HA!!  It explained why after my attack of the dizzies, my eyes now feel tired all the time and I frequently suffer from headaches!   It explained why my balance sucks in the dark!  It explained why my eyes feel different!  My little eyeballs are working overtime to inform my brain about position and movement, in order to help me maintain balance.  After all this time of not even knowing what truly caused my vestibular disorder, having an answer to something was like wrapping myself in a large, soft, cozy blanket.  I was comforted.

Having the doctor tell me about my visual dominance didn’t solve anything; it didn’t cure anything.  But it reassured me.   Because Vestibular Disorders are usually invisible to those around you, we can have a tendency to doubt ourselves.  To wonder if we are imagining symptoms.  I’ve learned that it doesn’t matter if a doctor doesn’t think your symptoms are important.  YOU are the expert about your body, not them.  It does not matter how many letters they have after their name, they are not inside your skin and they do not feel what you feel.

Don’t doubt your body and the messages it sends you. 

Trust yourself.

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Vestibular Rehabiliation Therapy Weeks 21, 22 & 23

November 12th was my twenty-first week of Vestibular Rehabilitation Therapy.  November 19th was my twenty-second week.  November 26th was my twenty-third week.

I continued to keep a journal of all my vestibular rehabilitation therapy exercises. I recorded if I encountered any exercises that were too easy or too hard and I recorded every time I performed the exercises.

I continued rotating in the Wii Fit every 3rd day into my therapy (so two days of vestibular rehabilitation therapy, then a day of Wii Fit).   On some days, I completed both my VRT exercises and used the Wii Fit.

Vestibular Rehabilitation Therapy Exercises

Exercise 1: Forward Progression with 360 degree (Full) Turns: On solid ground, walk making a quick full turn in place, leading with head and eyes, toward the right every 4-6 steps while continuing on a straight path forward between turns.  Rest to let any dizziness settle.  I perform this exercise walking up & down a long hall.

Exercise 2: Forward Progression with 360 degree (Full) Turns: On solid ground, walk making a quick full turn in place, leading with head and eyes, toward the left every 4-6 steps while continuing on a straight path forward between turns.  Rest to let any dizziness settle.  I perform this exercise walking up & down a long hall.

Exercise 3Figure Eight exercise: Walk, making a large figure eight pattern.  Perform this exercise while trying to focus on targets.  Rest to let any dizziness settle.  I repeat this 5 times.

Exercise 4: Walking in a Spiral: Walk initially making a large circle toward the right and then progressively decreasing size to a smaller circle.   Perform this exercise while trying to focus on targets.  Rest to let any dizziness settle.  I repeat this 5 times.

Exercise 5:  While sitting in a chair, quickly turn & get up out of the chair and then sit back down again.  Rest to let any dizziness settle.  I repeat this 10 times.

Wii Fit Therapy Exercises

I started each Wii Fit session by performing a “Body Test,” where the board calculates your weight and then gives you 2 games to test your balance.  This test is what determines your “Wii Fit Age.”  My best Wii Fit age was 27, my worst was 48.  During these weeks, the longest I played the Wii was for 70 “Wii” minutes (which doesn’t include time spent doing the Body Test) and the shortest amount of time was 31 “Wii” minutes.

Depending on the day, I played different games.  I always made sure that I played some Balance Games, like Soccer Heading, Ski Slalom, Table Tilt, Balance Bubble and Penguin Slide.

I continued to play Yoga Games, like Deep Breathing and Warrior.  I played Aerobics games like Free Step & Hula Hoop.  I also played Training Plus Games like Snowball Fight and Perfect 10.

 

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Vestibular Rehabiliation Therapy Weeks 19 & 20

October 29th was my nineteenth week of Vestibular Rehabilitation Therapy.  November 5th was my twentieth week.

I continued to keep a journal of all my vestibular rehabilitation therapy exercises. I recorded if I encountered any exercises that were too easy or too hard and I recorded every time I performed the exercises.

I had met with my doctor on October 25th and we discussed how the drug I was on for my Migraine Associated Dizziness was making me dizzier.  I discontinued that drug and began a new one.  In the meantime, because of this medication change and because my physical therapist was going on vacation, I continued with the Static exercises that I had been doing for the past couple of weeks.   As I’ve said in earlier weeks, if the exercises are too hard and they make me extremely dizzy & sick, then they are not effective and do not help my brain compensate.  Because the more Dynamic exercises that I had been doing in earlier weeks were causing my dizziness level to be more than moderate, my physical therapist has decided that we needed to back off of the Dynamic exercises and return to more Static exercises.  Here is a description of the differences between the two types of exercises.

I also continued rotating in the Wii Fit every 3rd day into my therapy (so two days of vestibular rehabilitation therapy, then a day of Wii Fit).   On some days, I completed both my VRT exercises and used the Wii Fit.

Vestibular Rehabilitation Therapy Exercises

Exercise 1: While sitting in a chair, turn my head over my left shoulder and then my right shoulder.  Rest to let any dizziness settle.  I repeat this 10 times.

Exercise 2: While sitting in a chair, nod my head up and down.  Rest to let any dizziness settle.  I repeat this 10 times.

Exercise 3:   While sitting in a chair, bend down as if grabbing something off the floor and then return to a seated position.  Rest to let any dizziness settle.  I repeat this 10 times.

Exercise 4:  While standing, turn my head over my left shoulder and then my right shoulder.  Rest to let any dizziness settle.  I repeat this 10 times.

Exercise 5: While standing, nod my head up and down.  Rest to let any dizziness settle.  I repeat this 10 times.

Exercise 6: While standing,  bend down as if grabbing something off the floor and then return to a standing position.  Rest to let any dizziness settle.  I repeat this 10 times.

Exercise 7: Practice turning with 90 degree (Quarter) Turns.  While standing, turn quickly to one direction.  Rest to let any dizziness settle.  Then turn back the other direction.  Rest to let any dizziness settle.  I should turn fast enough so that it makes me a little dizzy, but not too dizzy.  I repeat this 10 times.

Wii Fit Therapy Exercises

I started each Wii Fit session by performing a “Body Test,” where the board calculates your weight and then gives you 2 games to test your balance.  This test is what determines your “Wii Fit Age.”  My best Wii Fit age was 24, my worst was 52.  During these weeks, every time I played the Wii for 60 “Wii” minutes (which doesn’t include time spent doing the Body Test).

Depending on the day, I played different games.  I always made sure that I played some Balance Games, like Soccer Heading, Ski Slalom, Table Tilt, Balance Bubble and Penguin Slide.

I continued to play Yoga Games, like Deep Breathing and Warrior.  I played Aerobics games like Free Step & Hula Hoop.  I also played Training Plus Games like Snowball Fight and Perfect 10.

In week 19 & 20, I played some new games.  I worked in some Strength Games.  The first was Single Leg Extension.  In this exercise, you have to balance on one leg and repeatedly pull it back and forth.  It requires balance and coordination, which I don’t have much of.  I’ll keep trying this game, but I find myself yelling at the TV when it keeps telling me that I don’t seem balanced (ya think?!?)  The second new game was Torso Twists.  In this game, you twist from side to side and then diagonally, all while trying to maintain your center of balance.  This game was much better for my ego and, while I wasn’t perfect, I did OK.

I’m going to keep working in new games. I love the Wii Fit!

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Another Doctor’s Appointment; Still No Magical Cure

At the Doc Again; Still Dizzy

Back in September I started seeing a new doctor who practices Otology and Neurotology.  This doctor specializes in medical and surgical problems of the ear and side of the skull base and is sub-boarded in neurotology.  I felt fortunate to get an appointment with him (it took a while – he is quite popular).  He was empathetic and seemed very familiar with everything I was going through.  Sure, I was disappointed that he didn’t have that magical cure I was looking for.  And I was really disappointed and discouraged when he told me that I would never get back to perfect.  I guess a girl can’t have everything.  The Vestibular Neuritis has caused permanent damage.  He told me that he suspected that I have a combination of an uncompensated vestibular neuropathy and migraine associated dizziness.

At my September appointment, the doctor instructed me to continue my Vestibular Rehabilitation Therapy and to start working with the Wii Fit to help with my balance.  He encouraged me to continue to stay active.  The doctor also started me on a medication to help with the migraine associated dizziness.  I started taking Verapamil.  Within a few days, I started feeling dizzier and more imbalanced.  I emailed the doctor about my symptoms and he said that this drug could cause lightheadedness.  He also said that it would take 6 weeks to see if it would help the dizziness.  I decided to stay on it for the full 6 weeks because I wanted to truly give it a chance.

In late October I had a follow-up appointment with the doctor where I let him know that the Verapamil was making me feel worse and that I would not be continuing to take it.  He agreed that I gave it a good” go.”  He proposed that I give a different medication a try for the dizziness.  I have been taking the new medication, Diamox, for a little over a week.  So far, I don’t feel dizzier – Yay!  There are some interesting side effects with this drug (which I was warned about ahead of time).  I get tingling in my fingers and feet.  I have to pee all the time.  And all carbonated beverages taste awful now.  Awful.

I am hopeful that this new drug will work.  Especially because if it doesn’t work, then I don’t have many options left.  The doctor said that it was my last hope as far as drugs go.  If this medication doesn’t work, then the doctor says we should consider the intratympanic gentamicin injections to ablate the rest of my right inner ear balance function.  Intratympanic gentamicin injections are also known as “chemical labyrinthectomy” or a destructive treatment.   While tests have shown that I have a non-functioning right vestibular system, the doctor believes that there may be a nerve area that is still active which is why I’m uncompensated.  The doctor believes it’s possible that my inferior vestibular nerve may still have sporadic activity.

The procedure entails the doctor using an antibiotic called gentamicin and injecting it into my middle ear through my eardrum.   The goal is to damage my ear further (but also decrease any vertigo and dizziness).   There is a 20% chance that this procedure would leave me with hearing loss. There is also a 3-5% chance that it would also leave me with a hole in my ear drum (a.k.a. perforated eardrum), which would then need to be fixed with surgery.  Other risk factors include infections and dizziness.  The doctor would administer 4 injections over a period of 4 months.  I’ve read up on this procedure and there is a lot of variance in how doctors administer these injections.  I asked my doctor about it and he said there is no consensus in the medical community and this is where the “art” of medicine comes into play.  He said that the method he uses “seems to minimize hearing loss with a very good outcome.”  I asked the doctor what the percentage of effectiveness is with this procedure.  He said “about 85-90%, minimizing your disequilibrium and vertigo.”  It was also reassuring to know that he has performed this procedure many times (about 3-5 a month) and on people with situations similar to mine.

Back in September when I was presented with this option, I hadn’t made a decision regarding what I would do.  The possibility that this procedure won’t even help, but might cause damage is scary.  The thought of losing my hearing is scary.  I love music.  I listen to it every day.  It plays into my job – I am in charge of selecting the music collection for a Library System that serves a population of over 500,000.  However, living with this dizziness is awful.  In the past 2 months, it feels like I’ve had more bad days than good.  Is the possibility of lessening my symptoms, but possibly losing my hearing worth it?   Is the possibility of lessening my symptoms worth the risk of possibly making my symptoms worse?  It’s a huge decision and I think I’ve made up my mind.

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Vestibular Rehabiliation Therapy Weeks 17 & 18

October 15th was my seventeenth week of Vestibular Rehabilitation Therapy.  October 22nd was my eighteenth week.

I continued to keep a journal of all my vestibular rehabilitation therapy exercises. I recorded if I encountered any exercises that were too easy or too hard and I recorded every time I performed the exercises.

My physical therapist and I discussed how the new, challenging elements that we added in during weeks 15 & 16 were going.  He decided that because my dizziness level was more than moderate while doing the exercises, that we needed to back off of the Dynamic exercises and return to more Static exercises.  Here is a description of the differences between the two types of exercises.

I’m pretty sure that a new drug that I’ve been on for Migraine Associated Dizziness is making me more dizzy.   As I’ve said in earlier weeks, if the exercises are too hard and they make me extremely dizzy & sick, then they are not effective and do not help my brain compensate.  We also discussed how much I was enjoyed using the Wii Fit for therapy and how I felt that was going well.  He prescribed more Wii Fit! 🙂

This week, I asked my physical therapist a question that has been plaguing me for a while.  Did he think I would have to do these exercises for the rest of my life?  Like everything else with this vestibular disorder, there is no set answer.  He said that some people only need therapy for 3 months, some for 6 months, and some people take over a year.

I also continued rotating in the Wii Fit every 3rd day into my therapy (so two days of vestibular rehabilitation therapy, then a day of Wii Fit).   On some days, I completed both my VRT exercises and used the Wii Fit.

Vestibular Rehabilitation Therapy Exercises

Exercise 1: While sitting in a chair, turn my head over my left shoulder and then my right shoulder.  Rest to let any dizziness settle.  I repeat this 10 times.

Exercise 2: While sitting in a chair, nod my head up and down.  Rest to let any dizziness settle.  I repeat this 10 times.

Exercise 3:   While sitting in a chair, bend down as if grabbing something off the floor and then return to a seated position.  Rest to let any dizziness settle.  I repeat this 10 times.

Exercise 4:  While standing, turn my head over my left shoulder and then my right shoulder.  Rest to let any dizziness settle.  I repeat this 10 times.

Exercise 5: While standing, nod my head up and down.  Rest to let any dizziness settle.  I repeat this 10 times.

Exercise 6: While standing,  bend down as if grabbing something off the floor and then return to a standing position.  Rest to let any dizziness settle.  I repeat this 10 times.

Exercise 7: Practice turning with 90 degree (Quarter) Turns.  While standing, turn quickly to one direction.  Rest to let any dizziness settle.  Then turn back the other direction.  Rest to let any dizziness settle.  I should turn fast enough so that it makes me a little dizzy, but not too dizzy.  I repeat this 10 times.

Wii Fit Therapy Exercises

I started each Wii Fit session by performing a “Body Test,” where the board calculates your weight and then gives you 2 games to test your balance.  This test is what determines your “Wii Fit Age.”  My best Wii Fit age was 25, my worst was 44.

Depending on the day, I played different games.  I always made sure that I played some Balance Games, like Soccer Heading, Ski Slalom, Table Tilt, Balance Bubble and Penguin Slide.

I continued to play Yoga Games, like Deep Breathing and Warrior.  I also played Aerobics games like Free Step & Hula Hoop.  The longest I played the Wii was for 70 “Wii” minutes (which doesn’t include time spent doing the Body Test) and the shortest amount of time was 40 minutes.

In week 17 & 18, I played some new games.  The first was Big Top Juggling.  In this game, my Mii has to stay balanced on a balloon, while trying to catch and juggle balls.  I have to shift my weight on the Wii Balance Board in order to stay balanced.  It was a good game to challenge myself with; not only did this game require balance, but also it required multi-tasking.  I definitely need to work on doing better with this game. The second new game that I played was Rhythm Kung-Fu.  In this game, I have to watch a Mii perform a sequence of movements and then mirror those movements.  Timing is everything and my timing wasn’t always right.

Regardless of how well I score in the games, I am loving the Wii Fit!

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