I was never afraid to fly before getting labyrinthitis. Now that I’m living with a damaged balance system, I am uncomfortable while in any moving vehicle, so I have a fear of flying. I had to cancel 2 flights after getting sick in 2014, and I have not flown since.
I’m planning to tackle my fear next week, and I have to admit I am TERRIFIED. As the day approaches, I’m feeling more anxious. But I refuse to be a slave to this fear any longer. There was a time when riding the SeaBus was terrifying for me, and I’m glad that is now in the past. I’ve only told a handful of people about my plans to face my fear of flying. I have no real plans other than my flights, and my hotel booking. Worst case scenario, I’ll have Ativan to calm myself, and I’ll rest in the hotel.
UPDATE: I ended up getting sick with the flu several days before my planned trip, and had to cancel my plans. Being sick makes my balance worse, and I’d like my health to be uncompromised when I tackle this fear.
I’m getting used to what I’m able to handle with a compromised balance system. While I am better at listening to my body, I am still sometimes caught off guard by my new normal (like today). I had an epic day yesterday; I did laundry, then I went downtown to meet a friend. We had lunch, went shopping, then ventured to Granville Island. It was a great day spent with a great friend, but I overdid it, so I’m paying for it. I feel hungover. I’m moving more slowly because I’m extra wobbly, so I’m taking it easy today. I’ve already overtaxed my brain today by doing complicated tasks. No more heavy lifting for my brain today with this brain fog.
I used to get down when I felt this horrible. Yes, I’d rather I didn’t feel like crap, but this is part of what it’s like living with a balance disorder. I will rearrange my chores and to do list so I can tackle them at a later date, because this is my new normal.
It is the last day of 2015, so I feel I need to reflect back on how far I have come. This time last year, I did not venture more than a few blocks from my home. I was so ill from labyrinthitis that I could not stand or walk without assistance from my hiking poles. Those things were my best friends! Busy, and loud environments made me feel horrible, and I did not know if I would ever feel normal again. I did not leave North Vancouver for more than 4 months. My goals for 2015 were mostly related to my recovery from labyrinthitis. Here are the ones related to my recovery:
Take a bus to Park Royal
Go to the mall
Ride the SeaBus
Walk without assistance
See a movie in a theatre
Return to work
I am proud to say I accomplished them all, but they were not easy, and came with many tears. Anxiety was so prevalent with my illness; things I used to take for granted became very scary. When your balance is messed up, busy environments, loud noises, and moving vehicles seem scary. I had downloaded an audiobook, and an ebook on anxiety, and they helped me tackle my fears.
I work next to a mall called Park Royal in West Vancouver. Since my illness, I had not ventured there. About a month before I returned to work, my co-worker offered to meet me at the bus stop at the mall. She told me if I could not handle the entire bus ride, to get off the bus, and call her to pick me up. I made it, but I started to cry before I even got off the bus. Traveling to West Vancouver had become this big scary thing. My co-worker met me, hugged me (she is not a hugger, so that is how much I needed one), then we went for lunch. It was a huge step for me to get there.
After lunch, I went into the mall for the first time since my illness. It was January, so not when the mall was really busy. It was overwhelming, and I did not stay long, but I did it. Another item checked.
Then I went for a walk on the West Vancouver SeaWall; it was an epic day.
For tackling the SeaBus, I made plans for a friend to meet me on the other side, and I went for an acupuncture session before I attempted to go on the SeaBus. It was not an easy ride, as my head really did not enjoy it since I got a terrible headache, but I did it. So what if I cried when I got to the other side! My friend picked me up on the other side, and we went for a nice meal in a quiet place.
It was near the end of January when I suddenly decided to try leaving the house without my hiking poles. My vestibular physiotherapist had told me I needed to wean myself off them, and that thought was truly terrifying to me. One evening I decided to go out for a walk without them. I was so scared, but I was determined. I walked about 5 blocks, then walked home. After that, I would carry my poles with me (they are collapsable) as reassurance I could use them if I needed. I think it was a couple weeks before I was walking without even taking them with me. Go me!
I chose a non-action movie to see in a theatre as I had heard action movies had made fellow sufferers sick. I did have to close my eyes during some previews as they were too dizzying, but the movie was a success.
I started a very gradual return to work in February. About a week before my return, I planned a short visit to the office because it had become another huge fear since it had been so long since I had worked. I started to cry as I exited the elevator on my floor, and approached my office. I am glad I did that short visit to get over my fear of going back.
My return to work ended up being more challenging than I had anticipated since I discovered the fluorescent lights make me sick. Because of the damage to my balance system, my brain detects the cycling of the lights even though I do not see it with my eyes. I tried several things to try shielding myself from the effects of the lights, but the only effective remedy was replacing them with LEDs. I am so grateful to my boss for going through with it, as it was not cheap. There are LED tubes that fit into fluorescent light sockets, but they were not readily available in the sizes needed for my office (thanks to my friend in the lighting industry who put me in touch with a company that could order them for us). It was more than 4 months before the lights were replaced in my office; I do not even know how I survived working under the fluorescent lights that long. They gave me a headache, they made me dizzy, the nausea was horrible, but the worst symptom of all was the brain fog; I felt like I could not think under them. When they were finally replaced, I could start working up to a full day, and feeling like a productive member of society again.
I had a bit of a setback in another area recently; I had a lower back injury in 2000 that flared up after a fall (not related to my balance disorder). When my back went out just over a month ago, I popped some back pain pills, and thought I would be fine. Nope. My back refused to let me bend. I was in agonizing pain for quite some time, but I got through it with the help of many medical professionals, ice, swearing, and some prescription painkillers. These days I mostly use ice for pain relief, so that is an improvement. Sitting still causes pain, so on that note, I should finish this up so I am no longer sitting.
I am grateful to so many people for helping me along the way, and I am glad I found other people online who knew what I was going through. That is why I created this blog, so I could share my experience with others going through the horribleness that is labyrinthitis. It is truly the worst, and it can make you feel like you are crazy, but with hard work, and determination, you can recover. I feel like I am at about 90% after more than a year.
This time last year, anxiety had me fully in its grips, and had taken over as my worst symptom. I have never been a fan of anxiety, but the anxiety and panic attacks I have experienced since being diagnosed with labyrinthitis were much worse than what I experienced in the past.
In November 2014, my anxiety became so bad, I could not sleep. I talked to my co-worker (read: cried my face off), and she kindly offered to take me to see my GP. I had suffered from anxiety and panic attacks in the past, and was given Ativan before when my anxiety was severe. This visit, my GP gave me a prescription for a handful of Ativan pills to help me in the short term, and also prescribed an antidepressant for the longer term. In the meantime, someone on the Facebook support group for labyrinthitis mentioned acupuncture helped her, so I set out to find an acupuncturist close to home.
Ativan helped me finally sleep that night. What a relief! On November 18, 2014 I went for my acupuncture session. Wow, what a difference it made. Not only was he able to calm me down, but he also helped my balance. I started seeing him twice a week, and booked appointments to use up my benefits until the end of the year. I had tried acupuncture in 2000 for pain from a back injury, but it didn’t work again after the first successful treatment. That was not my experience this time, and I’m so grateful for that. I never ended up taking the antidepressants my GP prescribed because acupuncture was so helpful. My only complaint would be that the effects did not last beyond the day of my treatment.
I’m so glad I had the people from the Facebook support group during that awful time. I honestly do not know how I would have made it through to the other side without the support of others who knew what I was going through. Balance issues are so odd. They affect so much more than your balance, while making you feel like your world will never right itself. I knew from others in the support group that I would not improve unless I was able to get my anxiety under control. I had a therapist, acupuncture, Ativan, more than one book on overcoming anxiety, and the support of others going through the same thing to help me. I’m grateful to be in a much better place now. I am not fully recovered, but I have improved a lot, and anxiety is not playing a feature role any longer.
I suffer from what I call overstimulation hangovers after I’ve done an activity a little too stimulating for this version of myself. I feel like I’m hungover, but since I do not drink, it is from stimulation, not alcohol. That is how I feel today. I went to a cooking class after work last night. I had originally booked the class last year, but once I got labyrinthitis, I had to cancel it. I finally rebooked the class, and it was a lot of fun, and I really enjoyed myself, but when I woke up this morning, I did not feel well. I had a headache, and generally felt hungover. I’m lucky I thought to ask my boss to come into work later today, but it was still tough after my late start. I hope one day these overstimulation hangovers will be a thing of the past, but for now they’re part of my reality.
Overstimulation hangovers are one of the reasons I do not see friends as often as I used to. I cannot handle the activity level. It is important for me to go for nature walks before work, and several times during the week. Nature, you are my therapy.
Since learning I had a balance disorder, I was advised to stay away from alcohol, caffeine, and cigarettes. I have never been a smoker, so that was not an issue for me. I was never a coffee drinker, but I have been known to use tea for my caffeine fix when needing to function while tired (like almost every work day before I got ill). Well, I have not had any caffeinated tea in a year, and I have managed to operate without it. In the distant past, I was a Coke addict (hee hee). Coca-Cola was my caffeine of choice for many years until my doctor suggested I stop consuming it over a decade ago.
I was never much of a drinker; mostly just a social drinker. I have tried alcohol since being diagnosed with labyrinthitis; as expected, it made me extra wobbly. I decided I do not like how that makes me feel, so for now, I do not drink alcohol. I may change my mind in the future, but I can live without it, so I will stick with mocktails when having drinks with friends.
My computer has decided to be a jerk, so I’ve shut it down, and put it in a time-out. This is going to be short since I’m typing it on my phone. This week is Balance Awareness week, and today marks a year since I became ill with labyrinthitis. What a year it has been. I’d say it has been my toughest year so far, but I have come a long way. I had hoped to have more on my website by now, but for me, part of living with a balance disorder is dealing with fatigue. I simply do not have the ability to do as much as I did before I got labyrinthitis. So, further updates will come as I have the energy to get to them. Please visit the Vestibular Disorders Association website for more information on Balance Awareness week, and on vestibular disorders. Their site has been extremely useful to me over the past year.
As I continued with my recovery, different symptoms would trade places as the worst offenders. My brain fog became so awful, I could not remember things from one moment to the next. For instance, if I put the kettle on to boil, I learned to set a timer to remind me after several times of wondering what the noise was after having forgotten I turned it on. It can be quite scary when your memory is affected to such a strong degree, especially when you used to identify as someone with an awesome memory. The way some people on the Facebook support group talked about brain fog was that our brains were working so hard at keeping us upright, they could not be bothered with little things like remembering what we did, or coming up with the correct word when speaking. I remember one thread on the group where people were sharing examples of things they did because of their brain fog; one person said they put their purse in the freezer. I never put anything in the freezer that did not belong there, but I would consistently use the wrong words when speaking, but would realize right after I had said them that the word was wrong. An example was using groceries instead of garbage (I would say I have to take out the groceries), or using other words that started with the same letter. I also had a very hard time finding my words when speaking; this made conversations very difficult for me. It was very odd, but eventually I got used to it and stopped being so hard on myself. It did freak me out in the beginning, so it took time for me to accept this as part of the illness, and not to be too worried about it.
I also had a very hard time concentrating. There was no way I could do any complicated tasks (like my job). It was the beginning of October 2014 when my GP suggested I may have to go on short-term disability. The idea of not working for an undetermined amount of time scared me for several reasons. Firstly, I had never been this sick for so long, and I was starting to worry I would never be my old self again. Secondly, I support myself, and I was concerned I would run out of savings before I was able to work again. I used up all my sick days by mid-October, so I started the process to apply for EI Sickness benefits. Part of the process was to get a note from your doctor. My GP has been supportive during the whole process, and she kept telling me it was not my fault that I got sick, and that everyone is different, and it lasts as long as it lasts. She knew I prided myself on being a good employee, so she was aware my illness really took a dig at my self-worth.
In the beginning of October I suddenly recalled owning hiking poles, so I started using them to get around while out and about. Those poles helped to steady me while I walked, and took away the fear of falling. Most of my days consisted of some sort of medical appointment, and doing my vestibular rehabilitation therapy (VRT) exercises. Once a week I had my groceries delivered. I’m so grateful that one of my local grocery stores started home delivery just a short while before I became ill. My boss told my co-worker she could help me out during office hours, so several times she came over to bring me things I could not get on my own, or to take me to do errands I could not easily do myself. One of my friends lives a few blocks from me, and would drop things off for me, including yummy turkey dinner in October for Canadian Thanksgiving. I’m so grateful I had such a supportive network of people around me during one of the most difficult times in my life.
Stemetil helped me feel a little better, but the possible side effects were scary. It was originally an anti-psychotic drug that just happens to help with nausea and vertigo. I slept a lot in the first months of having labyrinthitis. I was told to rest by every health professional I had seen. I eventually developed really bad ringing in my ear (tinnitus), and it became maddening. I’d have to stop what I was doing when it came, because it felt like it was taking over my entire head. I remember thinking it would never go away, but it eventually did. I also had a constant headache for months. So glad it finally went away.
A friend who had suffered several times with vestibular neuritis texted me that the only thing that helped her recover was seeing a vestibular physiotherapist. I had never heard of vestibular rehabilitation therapy until she told me about it. I found a vestibular physiotherapist close to home, and started seeing him on October 9, 2014. He recommended going off all the medication I was taking for my symptoms so that my brain could compensate. Vestibular rehab is the worst. No, really. I cried at all of my appointments in the beginning. They first have to test to see where your issues are, and determine which is the problem ear so they know how to tailor the exercises for you. Exercises are designed to make you become dizzy, so that your brain can learn to eventually not get dizzy. It is as horrible as it sounds. But, I believe it is the only reason I improved. Those exercises were so horrible, I called my co-worker crying after I did them by myself the first time. I did not want to do them again; they felt like torture.
I had joined a support group on Facebook for people suffering with labyrinthitis, and the people who were mostly recovered said that the only way to get better was to do VRT. I’m so grateful for the people in that support group. It made me feel like I was not alone. Labyrinthitis is a debilitating and terribly isolating illness. When you cannot even walk on your own, when loud and busy environments make you feel horrible, and you cannot do things once considered easy, you lose your sense of self. So, I did what was recommended, and I eventually started to see improvement.
When you feel horrible all the time, it is difficult to notice any changes, so I started journaling to help see how I improved over time. In my first journal entry on October 29, 2014, I wrote “I’m doing exercises 3 times a day to retrain my brain in the hopes I’ll eventually not feel dizzy. Vertigo sucks. My brain is really fuzzy. It’s not a great feeling. Things are difficult for me right now. I feel like I’m stuck in the movie Groundhog Day or like I’ve had THE WORST hangover for 6 weeks, only I never had any alcohol.”
It all began on Tuesday, September 16, 2014. I suddenly became severely dizzy while bending down to get something out of my filing cabinet at work. I felt so unwell that I did not believe I could manage taking the bus home, so I ended up calling a cab, and asked my co-worker to walk me outside to meet it. I figured I’d sleep it off, and be fine the next day. I ended up going to a clinic close to home, and the doctor I saw looked in my ears, and said I had ear infections in both ears, so no wonder I was dizzy. She said once they cleared up, I should feel fine. She performed a test to see if I was suffering from BPPV, or benign paroxysmal positional vertigo (the most common cause of peripheral vertigo), but determined I wasn’t. She prescribed some antibiotics, but told me to wait a few days before taking them to see if the infections cleared up on their own. When I didn’t feel better, I started taking the antibiotics. I went to my doctor’s office several days after my symptoms started, and they prescribed Serc to help with the vertigo. I had tried the over the counter drug Gravol, but it did not really help my symptoms. I kept being told to rest until my symptoms resolved.
After being on antibiotics for almost a week, I did not feel any better, so I went to a clinic to see what was up. The infections were still in both ears, so the doctor I saw prescribed a different antibiotic to see if it would help.
I had suffered from vertigo several times in the past, but it had never lasted longer than a few days. I was prescribed Serc for vertigo those other times, and it helped my symptoms to the point I was able to function until the vertigo resolved itself in a few days. This time, it was a different type of vertigo. In the past, it felt like my surroundings were spinning (objective vertigo). During those bouts of vertigo, if I looked up at the ceiling, it appeared to spin. This time it felt like the spinning was inside my head, like my brain was spinning incessantly (pseudovertigo). Just thinking about it makes me feel ill. Vertigo really is the worst.
On September 29 I decided to go to the hospital because I just kept feeling worse, and it had been almost 2 weeks. The nausea was terrible, and I could not move my head without feeling extremely dizzy. I live 5 blocks from the hospital, but I had to take a cab because of the vertigo. After looking in my ears, the doctor I saw in the ER said the ear infections had cleared, so he diagnosed me with labyrinthitis after doing a few tests to determine if my vertigo was central or peripheral (central vertigo is caused by issues with the central nervous system, while peripheral vertigo is caused by issues in the inner ear, or vestibular system). He said if I was not feeling better by the end of the week to come back. When he first came to see me where I was sitting, I remember asking him to please stop moving as it was making me sick tracking his movements with my head. Since the antibiotics did not seem to help me at all, the doctor said it was most likely the ear infection was caused by a virus, and had travelled from my middle ear to my inner ear, wreaking havoc on my balance.
I went back to the hospital on October 3. I was so dehydrated because the nausea caused me to completely lose my appetite. They gave me fluids by IV, along with Stemetil for the nausea. With Stemetil, I finally got my appetite back. The doctor and nurse watched me walk to make sure it was okay for me to leave before they let me go. I was in a bed at the hospital for several hours before that. They monitored my blood pressure since it was elevated when I got there. I believe it was because the vertigo caused me to freak out that I’d never be able to function again. My blood pressure was normal after the initial high reading. They ran some blood tests as well to test for other possible causes of vertigo, but everything came back within the acceptable levels. I left the hospital able to walk better than when I arrived at the hospital, so I went to fill the prescription for more of this miracle drug.