My last 3 years with vestibular dysfunction. January 2019

This is meant mostly for people that are new to dizziness/vertigo. I am not a Doctor so please do not take my advice over a physicians. This is only my experience with my dizziness. I will try to keep this short but well…you know how it goes. For those of you that are researching for others I am sorry to say unless you live it you will never understand it but keep the support up because the person who you know that is dealing with this crap really needs you. Every case will be different. This is very much an invisible disease.

Start of my Journey I began my journey into the dizzy world April 2016. At the time I was a middle aged man with fair health. Not too heavy and not too skinny. I was 47 years old. I am a copier technician with 18+ years experience. My work day after commute starts at 8am and goes to 5pm. No Holliday’s or weekends. Copier work for me is relaxing for me. Drive about 250km daily from customer to customer installing, fixing, training, delivering, etc. When there are no calls we go back to the shop.

Before my first attack I knew almost nothing about vestibular issues. Now looking back on it I would probably describe the first attack as Idiopathic Bilateral SSNHL Sudden Sensineurol Hearing Loss with vestibular dysfunction, tinnitus and migraines.

The first week after the attack I did not notice anything but the hearing loss and tinnitus. Because of that I just thought I had some ear wax and treated it with a home remedy kit. After a week the dizziness and vertigo started to kick in big time. I was also having troubles focusing my eyes.

My treatment really started with my first doctors visit about 4 days after my first symptoms. I was started on prednisone oral with a 10 day prescription and told to get a hearing test from a local audiologist. Sudden Asymetric hearing loss. My point of this blog is not about my hearing but they are directly related. Also my eyesight was affected. Trying to focus on anything was almost impossible at times.

My first visit with an ENT(Ear, Nose and Throat specialist) was 11 days after the first symptoms. This was the first time I was told this is an emergency situation (48h window). She rushed me in for an inner ear ejection the next day. She also started to treat me the same as her Menieres patients.

Medication

She started me on betahistine(Serc) 3x16mg daily and meclizine for full vertigo episodes. She also ordered an MRI (5 month wait) and Balance Testing (4 month wait). I had a standing appointment with my ENT every Wednesday for the next month to review meds and symptoms.

Betahistine is a Vestibular inhibitor. When the Vestibular system goes out of wack the balance system sends wrong signals to the brain. Betahistine is thought to reduce the amount of signals from the inner ear. Once the brain is not getting as much information from the balance organ it can trust the information from the eyes more. I believe that it took at least 2 weeks to start working and probably more than 6 months before the full affectiveness was achieved. When I miss a dose I am dizzy within about 3 hours from when I was supposed to take it. Some say it is a placebo but for me it works so placebo or not I have not had an alternative that works that well with no side effects for me so far.

Meclizine I really liked taking this drug when having a vertigo attack or when I felt an attack was imminent. My only issue with it was that it made me drowsy. If I did not have to go anywhere for a few hours this really helped me rest and my balance system seemed to reset very quickly. I could not take this medication and drive.

Medical Advice???

During this whole adventure I could not get any decent information from the physicians. All they would tell me is I had hearing loss and was dizzy because I probably had a virus???

I was too dizzy and had vertigo while driving for the first 2-3 weeks so I sat at home and asked Dr. Google what was happing. Most of my initial research came through Wikipedia as I knew this as a generally accurate source that was not there to pick my pocket. To be honest Vestibular Dysfunction kicked my Ass then and still does now if I am not careful.

My own Research

I found many different things that can cause dizziness. SSHL, SSNHL, audiotoxic medication, Meniere’s, Migraine, TMJ, BPPV, Migraine, Interrupted blood flow, TIA, Cortical Deafness, Labyrinthitis, MS Multiple Sclerosis, Tumor, lime disease, diabetes, blood pressure, Paget’s disease, Servical, etc.

I also found that in many cases there is NO cure. There are a lot of snake oil sales men ready to take your money.

After creating a binder full of information I started to sift through it to narrow down my symptoms to the information I had found. I knew things like MS and tumor’s could only be ruled out by the MRI so I set those aside until I could get my MRI.

The one major problem for me that was lacking was support. I can do my own research but without direction from others with the same issues I was kinda lost. I saw 2 GP’s, 2 ENT’s and a neurologist in my first month and not one had any advice for a support group. I tried to find some locally but could not find any. So I again turned to my computer for more information. I did find a few good sources like www.CHHA-ED.com and WWW.vestibular.org. My biggest recourse end up being Facebook support groups.

2nd Month and trying to get back to work

After my first month I started to feel a “little” better. I was able to go back to work some days…depending on if I could drive or not. Every time I got behind the wheel if I could do 2 quick shoulder checks without a vertigo spell I felt confident to drive for a bit. I had to watch my symptoms very carefully because they could change within a few minutes. I would drive for a while and then not feel good so I would pull over, let my wife know where I was and try to relax until I was stable again. If I pushed myself too much I would get to the point of being nauseous.

I am incredibly lucky that my work was understanding. In the first 6 months of this I had to take about 8 weeks off. Not all at once but I would try to work and have to take the afternoon off or I would have a string of dizzy days and then good for a few. As the only wage earner in the home this also stressed out the rest of the family.

Triggers

I learned that there were triggers that would set my vertigo off. Finding the triggers was not always easy but it is essential to find out what they are and what to do about them. It’s easy to say exercise, eat well and go to bed on time. Vestibular dysfunction is not that forgiving. Sometimes the smallest thing can set off you vertigo. For me it is not about cutting out the triggers but dealing with them in moderation.

Some of My Triggers Stress, lack of sleep, elevation changes, barometric pressure, salt, sugar, heights, glass elevators, escalators, stairs, railings, lack of food, excess of food, fast food, light, lack of light, swivel chairs, slanted floors, carpet patterns, there are many more but too many to name and I am still discovering triggers.

Sometimes it is just really strange. I like to play pool. I have been on a pool team for 18 years. One day I leaned my cue up against a pool table. I could not walk past that pool cue without getting sick. I tried over and over again because I could not believe what was happening.

Another experience I have had is going fishing with my dad. We would go out in the boat and I will be fine. We can spend hours out in choppy water and I will not feel dizzy or have any vertigo. The moment I step back on solid land my world feels like I am walking or standing on waves for hours.

A third and most common for me is when I get my hair cut. I sit in the swivel chair and I am fine. I close my eyes when I get my hair cut because I don’t like hair in my eye. Then the stylist spins the chair I can feel when it starts but not when it stops. My body feels like it is going around in circles until I open my eyes and can see that the chair is stationary.

4 months in

My first drop attack happened while I was sleeping. I went for an afternoon nap…something I do a lot now. When I woke up the room was in full spin mode. I am not talking about a little vertigo or dizziness I mean full spin cycle. I tried to call out to my wife. I tried to get out of bed. Neither was happening. I would lift my head only to have it slam back down on my pillow. To be honest I thought I was having a stroke. My vision was blurry. I was seeing stars. I finally stopped fighting it. I said a little prayer thinking this might be the end. Somehow I fell back to sleep and when I woke later I was back to my slight dizzy self.

Balance Testing Also in my 4th month I got to go to the hospital for some balance testing. They sat me down in a big chair and set me up with some huge goggles. The goggles would display red dots moving in different directions and patterns. I was asked to follow them as best as I could as they recorded my eye movements. After a while the chair was changed into a bed and as I watched the red dots the technician would rotate my body into different positions. The last test was blowing cold and warm air into the ears while watching the dots etc. Sometimes this is done with liquid but because of my earlier injection through the ear drum my ENT did not want the liquid version. Results of the balance testing was a 3 page report that I did not understand. The only thing I saw that made any sense was Vestibular Dysfunction Left 58% and Right 50%. When I had my follow up with my ENT. She said I had dizziness and vertigo…Really????

Month 5

I finally got my MRI. Good News no signs of MS or tumors.

I live in a country with a two tier health system. One one hand I could have paid 5k and get the MRI in the first week but because I waited it was paid for through my government health care.

Month 6

After missing about 8 weeks of work…a day here…few days there…going home early etc. My life finally got somewhat back to normal. I found a weekly routine that seems to work for me. After 6 months of testing my balance system I came to the conclusion that I basically have to follow a weekly schedule.

Diet I drastically cut down on my salt, sugar and coffee.

Exercise This one is hard for me because when I exercise I get dizzy quick but I know I have to because weight gain is one of my biggest side affects since this all started. I make a conscious decision to walk when I can. Even if that just means parking on the furthest parking stall from a mall or pool hall.

Rest I have to rest. This is a make or break for me every week. If I do not rest I will have vertigo.

My week goes something like this.

I know I will be dizzy every day. I will be worn out at the end of every work day. I will have migraines weekly. It has been this way for 3 years. My way to deal with it is to manage my symptoms the best I can. I still manage a 45h work week but only if I follow my daily and weekly schedules of diet, exercise and rest.

Monday This is my best day of the week. I am only dizzy if I am stressed or haven’t been following my diet etc.

Tuesday Starts off ok but gets a little dizzy throughout the day.

Wednesday slightly dizzier that Tuesday but still manageable. This is also usually a night out for me.

Thursday Dizzy by lunch but can make it through the day and am exhausted by the time I get home. Early to bed when I can.

Friday Dizzy all day. I usually try to have a lunch time nap. Even if it is -30c I will find a dark place to park and catch some zzz. If I don’t there is a good chance I have to go home before I have a vertigo spell.

Saturday and Sundays are my rest days. This means recliner, Netflix or computer games. I do live on an average so I plan about 4-8 hours of work in and around the house but I cannot do more than 2h of hard physical labor at a time.

6 months – 3rd year

To be honest from my 6th month to now almost 3 years later not much has changed. My hearing has dropped another 15dB across all frequencies. I have more good days than bad but it is always there ready to take me down. There is always a fear of getting so bad I can’t work or drive. I am happy to report that in 2018 I made it the whole year without taking a full sick day. Up to now I have not had a full vertigo attack since my 4th month. I believe now that is because of the early adoption of betahistine and taking meclizine when I go off the rails.

My Diagnosis After 3 years…I have no actual diagnosis of the initial attack or the on going disease.

Theories are that I had a virus, lack of blood flow or audiotoxisity that created swelling in my inner ear that damaged both my balance and hearing organs.

Treatment I am still being treated as a Menieres patient but are also considering it might be a mixture of PPPD, VM, TMJ, Migraines and Servical issues.

*My ENT will not classify it as Menieres only if I have 2 drop attacks within 6 months. The reason she will not is because if it is Menieres I would loose my drivers licence, job and independence.

Medication I have reduced my betahistine down to 2x 16mg daily but will bump back up to a third if I am having a really bad week. I have not had to take meclizine for a long time now. I have been prescribed propranolol 10mg daily right before bed. That has reduced my migraines quite a bit.

How I deal with other issues that happened at the same time such as

Deafness left profound and right now moderate to profound. I take ASL courses and visit the deaf community every chance I am able to practice. I do wear a hearing aid in my “good” ear and that helps with conversations and balance. I also have turned on subtitles on everything I can. I have applied for a Cortical Implant but have been denied twice so far for funding. According to government funding my “good” ear has to determinate more before I can be put on the 6 month – 3 year waiting list of candidates.

Tinnitus is always there. Sometimes I can quiet it down by listing to music or putting in an ear plug. I know an ear plug is a strange treatment but the way I understand it is tinnitus is an emergency response created from the brain because of lack of sound. When I put in an ear plug the brain knows it won’t hear anything so doesn’t try as hard.

Misconceptions It seems people think my medication so I will not be dizzy. What people don’t understand is the medication is so that I can function while I am dizzy and hopefully it will also prevent me from having another drop attack and fewer vertigo attacks. I also know that people have no idea when I am dizzy until I walk into a wall or stumble.

What I know is Vestibular Dysfunction is a very misunderstood disease. This disease will kick your butt if you let it and sometimes when you don’t expect it. It can be manageable. Most of it is invisible…My wife, I love her, she is an incredibly smart kind person. She will do anything she can to make my day better. I know that even she has no idea how I am doing moment to moment day to day unless I tell her. People around you will not understand what you are going through.

If you know of someone with Vestibular Dysfunction the best way you can help them is to believe them. They will be emotional, confused, tired, cranky and get upset easy. They may not want to go up an escalator or look over a railing. They may have to hold onto something solid when they look up at the stars. They may sleep a lot…..I am talking days.

My advice if you have Vestibular Dysfunction is be patient. Get lots of rest. Test your balance over and over again. Watch your triggers…Everything in moderation is key. Lean on a wall if you have to towel off you head. Tell someone you need help when you do.

Probably my most important advice….You are not alone.

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