My So Called Dizzy Life

My Chronicles of Vertigo, Nystagmus, Imbalance & Dizziness

Happy Dizzy-versary to Me!

It’s official.  Today is my one year anniversary of having a vestibular disorder!  Life is different once you have the dizzies.  I have come to think of life as Before Dizzy and After Dizzy

Before Dizzy, life was easier.  After Dizzy, life is more of an effort.  Before Dizzy, life was calm.  After Dizzy, life is unsteady.  Before Dizzy, the ground was solid.  After Dizzy, the ground is marshmallow.  Before Dizzy, life was “normal.”  After Dizzy, normal means dealing with fatigue, headaches, light-headedness, tinnitus that won’t shut up!, whirling sensations, and imbalance.  Before Dizzy, life was safe.  After Dizzy, life is unpredictable, uncertain, unsettled.  Before Dizzy, life was comfortable.  After Dizzy life is bumpy.

OK, so I’ve established that life changes after having the dizzies.  So…this may sound weird…I think it’s a day to celebrate.  I’m not saying that I’m happy to have the dizzies and I’m not celebrating the fact that I have the dizzies.  I just believe it’s important to acknowledge how far I’ve come.  Last June I had to use a walker to get around.  Today, I went on a 2 1/2 mile hike, with my trusty trekking poles.  I’m celebrating because I survived one year of dizziness!   Heck yeah, I’m proud of myself!

It is easy to feel down when you have a chronic illness.  It is easy to feel down when you have an invisible illness.  It is easy to focus on the negatives.  In the past year, I’ve learned that one of the keys to coping is to pay attention to the positives in your life.  Like focusing on simple pleasures.  Or focusing on the things that make you smile.  Or focusing on yourself and recognizing your own strength.

I encourage all the dizzies out there to celebrate themselves.  Celebrate your strength.  Celebrate your accomplishments, no matter how small.  Celebrate your bravery.  Celebrate your perseverance.   Celebrate your spirit.  Celebrate you.

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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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I’m Still Hanging In…

OK, so I’ve been MIA for a few months.  Turns out that having a Vestibular Disorder is more than tiring – it’s exhausting!  I don’t think I ever really understood what fatigue was until I got the dizzies.  Between my basic everyday activities and working my full-time job, I’ve just had no energy.  Or time.  I’ve felt drained.  For weeks and weeks (OK, months and months), I felt really guilty for not posting on my blog and writing summaries of my weekly vestibular therapy.  Admittedly, I didn’t respond to comments.  I felt rude.  I felt I was letting myself down.  Then I remembered that I wasn’t Superwoman.  I gave myself permission to take a break.

So what have I been doing?  Well, I saw another specialist in December who practices Otology and Neurotology.  I decided that I wanted a second opinion before proceeding with the intratympanic gentamicin injections that my doctor was recommending. (Read more about that here.)  After meeting with the new specialist, I decided that it was OK to give myself more time to compensate.  Maybe waiting won’t change my uncompensated vestibular neuropathy, but maybe it will.  Maybe I’ll learn to adapt better, maybe I won’t.  The one thing that I know for sure is that I am in control of choosing what path I will take.  I am in charge of the timeline and if I decide to proceed with the destructive treatment it will be when I am ready.

In the meantime, I’m just taking life day by day (I know, sounds cheesy.)  Most days I feel OK, some days I’ve actually felt good, and some days I feel icky.   I’ve actually felt icky the past 4 days.  Normally, my dizziness is always there; present in a turn of my head or a fast movement of my body.  But in the past 4 days, the dizziness has been swirling around my head, making it hard to focus.  I feel sick.  ( I’m sick of feeling sick.)  I feel scared.  (I don’t want the dizziness to get worse.)  But I just keep reminding myself that “shit happens” and I will get past this.  I’m trying to focus on far I’ve come.  I’m trying to focus on good things.  Last summer I had to use a walker to get around.  Now, I have the balance to go hiking (with my trekking poles).  I’m hoping that being positive will give me the energy and strength to get past the bad.

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In Spite Of

I’ve blogged about this before, but after my first episode of vertigo I went to Urgent Care (where they thought I had Benign paroxysmal positional vertigo) and then I followed up with my ex-primary care doctor who COMPLETELY ignored my symptoms and decided that I was just depressed and had high-blood pressure. (You can read more about that here.)  It was after that doctor’s appointment, where my symptoms were disregarded and that I felt I had no voice, that I decided I would do whatever I needed to do in order to get a doctor to focus on my symptoms.  I *knew* something was wrong with my body and I was so frustrated & upset that I couldn’t get my doctor to believe me.

The fact is that I am a larger girl.  As a larger girl, when I go to the doctor, my weight is often what is discussed (although my ex-evil doctor did not bring up losing weight when I saw her).  After being discounted and disrespected by my doctor, I wanted to make a change.  I had no intention of going back to the same doctor.  I wanted to find a new doctor who would listen to me and take my symptoms seriously.  I also wanted my new doctor to be able to focus on what was wrong with me and not a number on the scale.  So I decided that I wanted to lose some weight.  I do not believe in crazy fad diets or diet pills.  I knew that the way to accomplish my goal was through exercising and a change in my eating habits.  I decided to cut caffeine out of my diet and to lower my sodium intake.  I’m not a fast-food eater, but I did cut out things like pizza (unless it’s from Mod Market) and smothered burritos.  It wasn’t rocket science; Erik and I just made healthier decisions when it came to what we were eating.  I was on this new healthy path when I ended up in the hospital, less than 2 weeks after the appointment with my ex-primary care doctor.  It was in the hospital that I was diagnosed with Vestibular Neuritis.   Later I would be diagnosed with uncompensated vestibular neuropathy.

Losing weight and changing your lifestyle is not easy for anyone.  It requires commitment, willpower, motivation, patience, support, and a personal desire to change.  I believe that there is a huge difference between someone wanting to lose weight/knowing that they need to lose weight and actually trying to lose weight.  I have personal experience in this.  You need to be motivated and actually willing to make changes.  You can’t just talk the talk, you must be willing to walk the walk.

Having a vestibular disorder does not make losing weight and changing your lifestyle easier.  When you have vertigo, or dizziness, or disequilibrium, it does not make this easier.  When you always “feel off,” it does not make this easier.  It does not make exercising, sticking to a new way of eating, or losing weight easier.  It does, in fact, make it harder.  Especially when you are prescribed medications that cause weight gain.  Would you feel like exercising if you felt dizzy all the time?  No, of course you wouldn’t.   When you have a vestibular disorder, although it may be beneficial to be active, the last thing you feel like doing is exercising.   If your world moves all around you, staying still is more appealing.  Constant motion sickness, feeling like the ground is spongy & moves beneath your feet, unsteadiness, and dizziness are not good motivators.  But I was determined.

I couldn’t exercise at all after getting out of the hospital.  I was too fatigued and too dizzy to workout.  (After all, I needed a walker to get around!)  My only form of exercise was my Vestibular Rehabilitation Therapy.  I could, however, still stick to a new, healthier way of eating.  It helped that Erik was 100% on board with all of this and he eats what I eat.  And my sister was very encouraging.  Having a strong support network is so helpful.  I tracked (& continue to track) the food that I was eating.  I track things like calories, fat, carbs, protein, fiber, potassium, and sodium.  My goal is to eat a balanced, healthy diet.  I have not felt deprived; I still eat food that I like (including chocolate!) but I watch the portions.  My diet includes having sushi once a week!

Once I grew stronger and was no longer using a walker, Erik & I started going for walks at our local state park and I used my awesome trekking poles.  Since August I have logged many miles.  Now that the weather is cooler, we have joined a rec center that has an indoor track.  Staying active hasn’t been easy.  I am back to work, which is exhausting in itself.  And I still do my Vestibular Rehabilitation Therapy exercises every day.  It’s hard to find the energy to exercise, but I’ve been doing it.  Some days I am still too dizzy to exercise.  Just last week I could barely walk a mile at the rec center (instead of my usual 2 miles) because dizziness and nausea overtook me.  I’ve learned to cut myself some slack, while at the same time staying motivated enough to keep trying.

It took some time for anyone at work to notice that I had lost some weight.  One wonderful woman at work noticed and complimented me.  It made my day.  A couple other people noticed, but made comments that let me know that they assumed my weight loss was because I was ill.  Again, I feel I must stress that having a vestibular disorder does not make losing weight and changing your lifestyle easier.  A vestibular disorder isn’t a free pass to skinny jeans.  (Maybe I should get that made into a t-shirt!!)  I’m guessing that more people at work have noticed my weight loss but are too afraid to say anything because they, too, think that being dizzy means you lose weight.  And, of course, there were the few catty women who made non-supportive comments out of jealousy (Ladies, it’s so sad the way we treat each other sometimes…)

This journey has not been easy and I’m sure it won’t magically get easier.  When you feel dizzy and unbalanced, the last thing that you want to do is get off the couch.  As of today, my total weight loss is 52 pounds!!  52 pounds!!  Am I proud of myself?  Heck yeah!   I’ve accomplished this not because I’ve been ill, but in spite of being ill.

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A Dizzy Girl Copes With Stress

Stress.  We’ve all been faced with it.  Stress affects our bodies and can pretty much make any illness worse.  Start with a little tickle in your throat, add in some stress and suddenly you have a full-blown cold.  Start with a little headache, add in some stress and suddenly it feels like someone is taking a sledgehammer to your head.  Start with a dizzy girl who has balance issues, add in some stress and suddenly the dizziness & disequilibrium are worse.  Yes folks, stress can exacerbate the symptoms of a balance disorder.

It is how we cope with stress that makes the difference.

In the past, I’ve been known as a stress magnet.  I have been doing my best in the past 4 months to keep my stress levels down.  I made a conscious choice to change my outlook and how I react to things.  I may have no control over some of the things that happen to me in life, but I am in control of my attitude.  I’ve learned to not let every little thing bother me.  I’m exercising, doing yoga, eating a healthy diet, visualizing positive things, listening to music to relax, remembering to laugh, and just trying to truly enjoy some moment of every day.

This week I encountered circumstances beyond my control.  I couldn’t avoid stress – it was dumped on me whether I wanted it or not.  It started Monday at work.  Someone who I thought was a friend, who knows about everything that I have gone through in the past 4 months and who knows that I am trying to keep my stress levels down, decided to unleash a hailstorm of unpredictable, destructive rage on me.  I became someone’s emotional punching bag for reasons that I can’t even begin to fathom.  It wasn’t just a little irritation directed my way; it went way over the line into an unhealthy outburst of anger.  This person repeatedly, uncontrollably screamed at me and I was at the mercy of their intense fury.  Rather than an apology after this incident, I have been given the silent treatment.

I was, of course, very upset at first.  After all, I hadn’t done anything to deserve someone angrily lashing out at me and I certainly didn’t deserve to be the recipient of such rage.  I had to leave work early because I was so distraught.  I will admit that this incident left me in tears.  Sometimes the world – and people – suck.  Sometimes you just need to cry.  But then you need to move on and let go of the negativity.  I thought a lot about what happened, about my own life, and about the direction that I want my life to go in.  In the end, I learned some important things.

I am a strong person.  I do not have to let other people bring me down.  I believe that negative things and people will negatively effect your health and happiness.  If there is an aspect -or relationship- in my life that is not positive for my well-being, then I don’t need to maintain that.  I need to learn to identify what is positive and healthy in my life and seek those things out.  I need to identify sources of stress and try to eliminate them.   I need to know my limits and stick to them.  And I can cope with stress.

Some of the Things I Do to Deal with Stress (in no particular order)

1. Hug/play with my dogs.  There is nothing like the sweet, unconditional love of a pet.

2. Listen to music.  Anything from relaxing, quiet music to loud, emotional music.  It feeds my soul.

3. Watch something funny, from stand-up comedy to a sitcom.  And then laugh, laugh, laugh!  Humor is one of the best coping mechanisms that I have!

4. Find a quiet space, light some of my favorite candles, reflect, and relax.

5. Take some deep breaths.

6. Get a good night’s sleep.

7. Take a walk.

8. Blog 😉

9. Share my feelings with my family.  Talking to loved ones, even if there is nothing they can do to make a problem go away, can be very cathartic.

10. Snuggle with my husband.  A hug from him can make the day’s worries melt away.

11. Focus on positive things.  Today I came across a wonderful quote from Wendy Komac :  “Think of your lifestyle as a diet.  You fill it with the fuel that’s going to keep you performing at your highest level.  Supplementing that with positivity can only make you stronger.”

12. Let Go and Move On.

13. Look at the big picture.  I ask myself, does this really matter in the grand scheme of things?  Perspective is everything.

Since I’ve been become a dizzy girl, it has become easier for me to recognize when things are not worth getting upset or stressed about.  I have limited energy now and I am not in a position to waste it.  I would rather focus my time and energy on important, positive things.  Frankly, I am just so thankful everyday that I can walk without a walker, that the things that used to weigh me down fall to the wayside now.  I choose my attitude.

It’s up to you to decide what your attitude will be.

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