A Hard Couple of Weeks

As the title of this article suggests, I have not been having the easiest of weeks. I have been trying my damnedest to recover from a terrible cold that was just teeming with all types of sinus and ear infections, I have been working to build my compensation skills back up to where they once were. I have not been this dizzy in a long time, and to make matters worse, I decided to spend a four day weekend lounging on a floating dock of all places. As you might imagine, that does not bode well for a stabilized vestibular system.

On top of everything, I am attempting a new form of physio therapy that is called IMS which stands for Intramuscular Stimulation. The idea is to have a professional stick needles into muscle and nerve centers that are tight or knotted and need stimulation in order to release. Let me tell you this is one of the most painful things I have ever had to do. Every time they stick the needle in, its like that muscle group (and several others on down the line of your body) instantly cramp. The jury is still out on whether or not this is going to prove useful in my fight against dizziness.

Its times like these that it is easy for me to forget to focus on the things that are good in my life, like my husband, my family and everything else that we have to be thankful for. That’s why I am writing this article; to remind myself that things are always on the way up. I am using this article to remember that it is always important to try new things and hope that they will help you grow as a person. It is also important to remember that rarely in life do we have the opportunity to truly relax which is what I got to do over that four day long weekend. So though I am dizzy and uncomfortable now, I hope to learn to be grateful for the opportunity to overcome my vestibular issues once again.

Thanks for listening. Peace, love and happiness to you all.

What’s Not Helping

During the first few months of dealing with the chronic onset of my vestibular imbalance, I was encouraged to find what my therapists referred to as ‘triggers’. These could be anything that I noticed that worsened the symptoms that I was suffering from. Below is my list of ‘triggers’, and my hope is that by sharing them, then perhaps some of you will benefit from avoiding them as well. Everyone’s journey with vestibular imbalance is different. For me, I am altered to some extent every day, and the extremes depend on what I have done that day.

1. As I have mentioned in previous articles, stress is a huge hindrance when you are trying to recover from a vestibular imbalance. That being said, the number one thing is to try and avoid it as much as possible (which I know is very, very difficult).

2. People with vestibular imbalances are extremely motion sensitive. Not only are we sensitive to being in motion (meaning anything from riding in a car, to being on a train, or riding a carnival ride), but we are also susceptible to motion that we see (meaning anything from walking down the street and catching motion in the corner of your eye, to going to the movies and watching from a first person camera perspective). This is one of the worst triggers for me. Even the shortest ride in an elevator can leave me feeling like I am walking on the moon for several minutes, and don’t even think about asking me to go on a roller-coaster with you!
3. In the beginning of my journey I did an allergy elimination diet and the purpose was to see if anything that I was taking into my body was affecting my vestibular system. As it turns out, I have a rather large sensitivity to caffeine, alcohol and sugar. These three things proved to be HUGE inhibitors. For me, they heightened my vestibular imbalance to the point that I couldn’t function even remotely normally, aka: brought on what I have come to call episodes.

4. Probably the worst trigger for me is too much screen time. That is why I have taken well over a year off of work, because there are very few positions that don’t deal with at least some form of computer work. When I say screen time I mean computers, TV’s, tablets, smart phones, all the fun gadgets we know and love and are so dependent on. For me, I literally cannot stay on the computer for longer than an hour without it heightening my symptoms to where I have to step back for at least an hour. I know some people have trouble even when just reading a book, so much of what I have come to understand is that our vestibular system is fed information buy our eyes, and if our eyes are strained in anyway, then the vestibular system perceives this as imbalance.

5. AVOID BEING SENT TO THE “DIZZY CLINIC” in the South Health Campus Hospital in Calgary, Alberta, Canada. TOTAL SHAM. They made me wait for 6 months after promising I would be seen after 2 months. Then they made me wait another 2 months to be tested and another 6 months to get my results. In the end their ‘specialists’ told me that yes, I was deviated from the norm, but not enough so that they would do anything to help me.

I really hope this information helps. In my experience it is nice to hear from people who are dealing with or have dealt with the same things that I am going through. The most important thing to know, when dealing with something like this, is that you are not alone. This disorder or illness or whatever you want to call it can be extremely isolating, so always try to remember that there are people who are experiencing these things just like you are and you can always find someone to talk to.

What’s Helping

Today I wanted to talk about some of the things that have really helped me in my struggle against my vestibular imbalance. Something I found really helped was eliminating as much stress as possible from my life. As cheesy as it sounds, inner balance is the key to a balanced vestibular system. What has really helped me to regain some semblance of a normal life is a combination of physiotherapy, cognitive therapy, chiropractic therapy and yoga therapy.

Physiotherapy

I did physio with an amazing woman that was honestly one of the only people who could really explain what was happening to me and why. She was the only person to really listen to me, and understand my symptoms. This way, she was able to come up with different exercises I could do, in order to strengthen my balance center. She also gave me exercises and tools to continue on my journey on my own from home.She was incredibly helpful and really the first person I dealt with that had a real grasp of the delicate nature of the vestibular system. I highly recommend getting in touch with a physiotherapist that has a background in vestibular therapy if you or anyone you know is experiencing any kind of balance issues. I know if these symptoms are treated soon enough in the proper way, that it can save you a lifetime of dealing with a vestibular imbalance.

Cognitive Therapy

Cognitive therapy was extremely helpful in aiding me reduce the stress in my life. The number one thing that ties in with a vestibular imbalance is stress and anxiety. If you are experiencing dizziness or any number of the other symptoms associated with a vestibular imbalance, you are going to panic and become anxious because it is such an awful and unrelenting feeling. These two things feed into one another, and if you let them, things spin out of control, literally. A good cognitive therapist with even the smallest understanding of how the body works will recognize this and help you build a foundation and give you the tools and understanding to keep that feedback loop from forming. The key is to find someone with which you can build a strong and trusting relationship, because everything to do with cognitive therapy is very personal and even scary.

Chiropractic Therapy

I only discovered this towards the end of my first year dealing with my vestibular imbalance. IT WORKS WONDERS. I go to a NUCCA practice which is an Upper Cervical Chiropractic Care Clinic. They do not believe in the forceful adjustments or ‘cracking’ that other chiropractic clinics use. This practice is based on the manipulation of only the CI disk, located just at the base of the skull where it sits on the neck. Many people who suffer from a vestibular imbalance tend to hold their heads and necks incredibly tight, in the hopes of avoiding any kind of dizzy spells or associated symptoms. Most of us do not even consciously think about it when we are doing it, it is simply our bodies natural reactions to being off balance. The result of this is an incredibly sore and stiff neck, shoulders and back. A NUCCA practice is gentle and invigorating and I would highly recommend it to anyone, not just someone suffering from vestibular problems.

Yoga Therapy

This is not for everyone, I know, but now that I have finally found a skilled and relaxed practice, I feel that it is really helping me to build back up my balance center. I do both Gentle and Restorative yoga, taking classes from therapy certified professionals who want to know up front what you bring onto the mat and how they can help you. They are open to all kinds of props and modifications and are all about taking your time. Not only is a yoga practice good for balance, but it is a healthy way to stretch out all your muscles that, as I said earlier, can become incredibly stiff and sore from the way that people with vestibular imbalances hold their heads.

Sharing Is Caring

From time to time, I am going to share different pieces of writing that I have done throughout my struggles with my vestibular issues over the last year and a bit. I am not going to lie, some, like A State of Separation are going to be pretty dark. When going through something like this disorder, it is hard not to live darkly and depressed, and let the desperation take hold. I think by sharing these pieces with you, it will let some light back in for me.

Peace, love and happiness.

A State of Separation

I am alone.

Everything is dark, and the darkness is constricting.

My heart is racing and my hands are shaking.

The fear begins to seep in.

I can’t breathe, because to breathe would be a relief, and there is no relief from this.

I am isolated.

Bound by illness, held fast by this altered state.

The waves hit me; sudden and sharp.

Everything is spinning now.

Endless, lingering undulation.

I can’t fight it.

I must give in, let it take me.

As quickly as it comes, it leaves.

The waves becomes furrows then crinkles then ripples.

I am no longer held tight, but my heart still races, my hands still shake.

I no longer fear the present, but the return of the relentless tide.

I can breathe, but breath comes too quickly.

There is no relief.

There is no release.

I am alone.

What Does It Feel Like: A Look Into My Vestibular Symptoms

For those of you that don’t know, a vestibular imbalance is defined as damage sustained in the parts of your inner ear and brain that process the information involved with balance and eye movement, due to some kind of trauma, be that injury or illness. There are many different kinds of vestibular disorders, all ranging in different severities and effects.

I have seen many specialists over the years, been through much testing, and have been diagnosed with everything from Benign Paroxysmal Positional Vertigo (BPPV), Labyrinthitis, A-Typical Migraines that present with visual and vestibular symptoms and just plain old Vertigo. None of which I have learned, really apply to me.

In 2008, my husband and I had been living together in our little apartment for just over 2 years. I was working as an optometrist assistant (having taken time off from college to get some life experience and pay some bills) and my husband was working as a fireplace installer.

One morning I woke up, climbed out of bed and fell to the floor. I couldn’t walk. I had absolutely no sense of balance. My whole world was spinning around me like I had drunk gallons of Jägermeister and was suffering the spins, only much, much worse. I remember this morning very clearly, because until this point, I had no idea what true paralyzing fear felt like. Unable to do anything but crawl clumsily back into bed, I called my husband to no avail, then dialed the office where I was supposed to be headed to work. Bawling, and in a full blown panic attack by this point, practically incoherent, I described what was happening to the office manager and she assured me that a coworker would come and take me to the hospital. Maybe 30 minutes later, I was on the way not to the hospital, but to my family doctor who, after I had spoken with her, advised me I was not in fact dying, and to come to her office instead of waiting in the ER.

At the time, I had a fairly good relationship with my family doctor. She had been recommended to me by an aunt, and because she shared a practice with a co-worker, was able to dedicate more time to her patients. This is the kind of doctor I have always gravitated towards, because I am prone to respiratory problems, and maybe even a hint of neuroses, after growing up poked, prodded, inspected and medicated for one ailment or another.

My doctor assured me that what I was experiencing was ‘vertigo’, brought on by a lingering sinus infection that had made its way to my inner ear. She was certain that with a week or two of rest that I would be right as rain. I cannot recall if she prescribed me an antibiotic, but I highly doubt it because she was always skeptical of their effectiveness.

Years later, I have learned that this was a misdiagnosis, or at best a partial one, and that if I had been properly diagnosed and directed to attend a physiotherapist, then after a few small adjustments my life may have been completely different. But then, I am getting ahead of myself.

Still uneasy, but trusting fully in the relationship I had with my family doctor, I had my coworker drive me home, where I was finally able to reach my husband and let him know all that had happened.

As instructed I took 2 weeks off from work and literally did nothing but sleep. Occasionally, I would grasp my husband’s hands as I shakily made my way downstairs from our third floor walkup apartment, to go for a stroll and try (ineffectively) to regain some of my missing balance. Those were two of the most miserable, lonely and boring weeks of my life. As I mentioned earlier, I didn’t really have any family left in Calgary, so with my husband at work, I was very much alone.

At the end of the two week period, after much rest (if not much relaxation) I was feeling more myself, and able to return to my daily routine and my life.

Over the last several years, I have experienced something similar to that dreadful morning at least once a year, if not for that long of a time period. Every time I would go to my family doctor (who has changed at least three times in the last few years due to everything from patient neglect to said doctor making a midnight run out of the province) and every time I would be told that it was nothing more than ‘vertigo’ caused by a lingering sinus infection, and if I was patient and took time off from work or school to rest, the symptoms would go away.

During these years my husband and I moved from Calgary to Ottawa and then back again. We got a dog, I went back to school and graduated from university, he got a promotion, we bought a house and we finally decided to get married.

In February of 2013, about a month after returning from tropical paradise, in a haze of newly wed bliss, I was once again stricken with my dizzy disorder. I don’t know why, but this time, things felt very different. I can recall sitting in my basement with my husband and saying “I feel like this is never going to go away”. It is eerie how strangely prophetic those words have become.

One of the major differences was that I was experiencing what I have grown to call ‘drop attacks’ which consist of the feeling of your stomach falling out like when you are on some kind of carnival ride. I can do nothing when these attacks happen, for it feels as if the ground has been ripped from beneath my feet. If I am lucky, I am already seated, but sometimes I am not so lucky and have even pulled a sink out of the wall during one of these moments, just desperately seeking for something to hold on to in order to ride the wave. Sometimes the unbearable vertigo that comes with these waves lasts so long and is so powerful that I am unable to do anything but crawl to a safe spot and wait it out.

One of the major triggers that I have noticed associated with these attacks is movement caught out of the corner of my eye. This is definitely not the only trigger, but it is one of the more dominant ones, which is brought on by my extreme motion sensitivity.

The duration of my symptoms is also gravely different. Before, the longest I would experience symptoms would be about two to three days; a couple of weeks at the most. This time, I have had symptoms from one severity to another, from one degree to another, every single day since approximately February 16 2013.

The thing people don’t understand is that every single day is a struggle; to get out of bed, to take a shower without fear of a drop attack, to take my dog for a walk. Each and every one of the things that is needed for me to have any semblance of a normal life is battle. But with the help of specialists and therapies, I am making headway in my skirmish for normalcy and that too I will share with you.

Thank you for listening and I wish nothing but peace, love and happiness for you all.  

What’s It All About?!

My name is Caitlin. People know me as a wife, daughter, sister, auntie, friend, dog owner, animal lover and most recently patient. I am 27 years old and have been married a little over a year.

I grew up in a formerly small town, now practically a bustling suburb of Calgary proper, called Chestermere, Alberta. I had a fairly normal childhood. Grew up in a story and a half home that my father designed and built, with my mother, father, sister, two dogs, and occasionally my brother, who at 14 years older than me, has chosen to live his life rather nomadically. Most of my father’s family lives in Ontario, which is where he is from originally, so the majority of my childhood summers consisted of cross Canada road trips/pilgrimages either East or West depending on which family members we were visiting that year. Until my teens, the majority of my mother’s family lived in Calgary so most of my strongest family relationships developed with them.

I have never been an overly healthy child; born with a boney blockage in my right nasal passage meant I could never breathe out of the right side of my nose. Blessed with chronic eczema since birth, and diagnosed with chronic asthma at age 3 (when my fearful father took his blue in the face daughter to the emergency room because she wasn’t breathing), and a whole host of allergies makes for a relatively doctor’s-appointment and hospital-visit filled existence. I am not jaded or spiteful. I am well aware of the fact that there are kids out there who were way worse off than I ever was, but I also know for a fact, that there are children who grow up not sick a day in their lives.

Despite all of this (and puberty) I managed to make it through those early years with a positive and outgoing attitude towards life. I have had many close friends over the years; many of whom I am still in touch with, many of whom I am not. Though not a star athlete, I have backgrounds in figure skating, and Irish dance. My true passion has always been music; my parents claim I have been singing and dancing since I was 9 months old. The majority of my childhood consists of being driven from voice lessons to piano lessons; wash, rinse, repeat.

At the tender age of 18, I went straight from high school to college, where I was lucky enough to meet the greatest friend I will ever know; my husband. In 2005, at the age of 19 we started dating exclusively, and in 2006 when my family decided to move east, we moved in together. Nearly a decade later in 2013 we said “I do” and that was that. During our first year of marriage however, we have found ourselves faced with the greatest challenges to our relationship yet. 2013 was also the year that I would receive a diagnosis that would change my life forever.

You see, I was diagnosed with a vestibular imbalance. Maybe diagnosed is too strong a word. A few blanket terms that have been thrown around me that may help you to recognize what I am talking about are things like vertigo, dizziness, or even labyrinthitis. I don’t like using terms like these, because they are far too generic, and don’t even begin to describe what it is to have a vestibular imbalance, if indeed that proves to be my final diagnosis.

Even almost two years later, I myself am still struggling to understand what having a vestibular imbalance will mean for me in regards to the rest of my life. I have done nothing but struggle to find what works and what doesn’t, and I will continue to struggle until I am able to find a way to live my life free of the shackles of this persistent disorder. My purpose now is to heal myself; mind, body and soul. At the same time, I would like to be able to connect with others who have gone through what I am going through, and share stories and advice on things that have worked. I want to advocate for a change in our medical system, that allows for doctors to take a look at the ever increasing cases of what they deem to be ‘vertigo’ with more knowledge and an understanding of what actually works, rather than just suggesting bed rest, which though it has its merits, is not a long term solution to an injured and poorly functioning vestibular system.

It is my hope that by writing my story, by letting people know of my trials and tribulations, that I will be able to help someone who is as scared as I was when all this started. Though I cannot say it will all have been worth it, I will feel perhaps all my suffering will not be without purpose. Even if you yourself do not have a vestibular imbalance, but you are curious to learn more about it for either yourself or perhaps someone you are close to who has or is experiencing something similar, then I hope you use this blog as a resource. If this blog will help you to understand that not all illnesses and disorders come with symptoms that you as an outsider can see, then perhaps you can gain some perspective, compassion or empathy for those who do suffer, because believe me, we do. I look completely normal, and I find that the majority of my friends and family, the people that I meet or interact with, have a very hard time believing there is anything wrong with me at all because they cannot see it with their own eyes. Disorders like this can be so utterly isolating, and leave you with a sense of desperation and hopelessness. This blog is for people dealing with those feelings, who need to know they are not now and will never be alone.

Being diagnosed with something that people really have no understanding of, something that they aren’t really sure even covers what you are experiencing but it’s all they have to give you, is the most frustrating thing I have ever had to deal with. If this blog brings me closer to a community of people who are suffering in silence, brings me closer to people that have tried and experienced things that I haven’t, that have worked or not worked for them, then a dialogue towards treatment can begin for all of us.

The final purpose for this blog is simply to write about the things I have experienced, to gain a catharsis of sorts. I have learned over these last couple of years that it is extremely important to talk about what is going on in your life, to feel those emotions, but never to give in. I am not giving in and I hope that through this part of my journey I can connect, learn new avenues, deal with new possibilities, and maybe even make new friendships along the way.

Thank you for your time. I wish nothing but peace, love and happiness for all of you.