Chapter 1: What Is Happening To Me?
It’s been a while since I have written in this blog and I want to explain the journey I have been on. A couple of years ago, I was diagnosed with Meniere’s Disease. No, I didn’t know what it was before either so you are not alone if you do not. It’s been a life changing and alternating diagnosis as there is no cure. I am not dying or anything like that but my quality of life is something I will now have to battle for the remainder of my days.
I have been prone to ear infections most of my life. I really didn’t think anything of it. I just thought it was a quirky thing that I had to endure as they were not terrible, but just annoying. They usually occurred in and around a cold. Maybe about 5 or 6 years years ago I noticed I was getting other ear issues. Sometimes it wouldn’t be an infection per se but my ear would feel full for a few hours and then pop. No big deal.
My first Meniere’s attack happened about 3 years ago. I was lying in bed in the middle of the night and I felt like I had to go use the restroom. I sat up on the edge of the bed in the dark, like I have a million times. Except for this time the entire room was spinning and it wouldn’t stop. Now when I say spinning, I mean violent spinning. Imagine you are drunk, on a roller coaster, and on a boat somehow but you don’t know when the ride will stop and you cannot get off. It’s that violent.
It scared the hell out of me. I had no idea what was happening. I didn’t know if I was having a heart attack or stroke or what, but I knew something was very wrong. I woke up my wife in a panic and because I didn’t know what was happening, I couldn’t really explain it either. She tried to keep me calm and got me to car to take me to the ER.
By the time we got to the ER, and they got me in a wheelchair as they checked me in, the dizziness was easing and I was calmer. They diagnosed me at the time with BPPV or Benign Paroxymal Positional Vertigo. The doctor explained that we all have tiny crystals in our ear that can get stuck in the ear canal and cause mild vertigo. They gave me some meclizine and sent me on my way. I felt like Ok, Benign. That means harmless. I got this.
Chapter 2: It Gets Worse
I felt better after a couple of days and thought I had put it behind me. Then about 4 or 5 months later I felt very off walking down the hall at my work. It felt like I was walking sideways and I couldn’t walk straight. It wasn’t as violent as the last attack but it felt very weird. I decided I needed to see someone else. I went to a more general provider and they confirmed they too thought it was BPPV. They gave me some more anti-dizzy meds and cleaned out my ears and sent me home with some physical therapy exercises that are designed to help move the crystals out of the canal and where they should be. It seemed to help for a bit.
Then a few months later I was talking on the phone. I had the phone to my right ear. And I felt the uneasiness and then violent spiral of my first attack except it was much worse. It was terrible. I literally couldn’t find a position to keep my head in that would stop it. I started getting emotional as by this time I was definitely frustrated and this was worse than before so I started crying. That was a mistake. Then I threw up in a bag until there wasn’t anything left and my animals were freaking out. My wife, was amazing and took care me and calmed me down. She got me into bed and put on a fan and I finally got a little release from it.
At this point, I knew something was definitely wrong with me. I made an appointment with an ENT. When I told him my story, he immediately gave me a hearing test. I hadn’t had one since I was a child. It turned out in my left ear, I had a loss of hearing in the lower tones which isn’t normal. Apparently, when you get older, it’s more typical to start losing hearing in the higher tones first. Lower tones at my age are usually a sign of something else. My right ear at the time seemed fine.
The ENT sat me down and explained that there are few things it could be but the first thing he wanted me to was to get an MRI to rule out a brain tumor or MS. Anytime someone mentions a brain tumor that definitely humbles you.
Chapter 3: The MRI
I went to get the MRI and let me explain that I have had a few before, mainly for my knee. It has never been a big deal to me before. However, this time it was different. This time I was going in head first and on top of that, because it’s the head/neck area, they put your head in a cage and literally lock your head into place before they slide you in.
I was not ready for this. I have never been claustrophobic before but this gave me such a crazy feeling that I basically had a panic attack. I think it was the locking mechanism that really freaked me out. I had to squeeze the bulb they give you and tell them to pull me right out. They unlocked me and I sat up breathing really hard. I had to really work hard to calm myself down. I knew it’s hard in general to get an MRI appointment and I knew I wanted answers so I didn’t want to leave without getting the MRI.
I went back in but this time I kept my eyes closed the entire time, prayed, and counted the songs. I knew that the average song is about 3 minutes and started counting them to know about how much longer I had. I was so thankful when it was over.
A couple of days later I got a voicemail from the ENT that my MRI was normal. No tumors or signs of MS or anything like that. Apparently you can get a benign tumor on the nerve of your inner ear that causes vertigo and if I had had one, they would have had to operate to remove it. That was a relief. But I still had no idea what was wrong with me.
There was something in me that knew that I needed an ENT that specialized more in this area. I scheduled an appointment with another ENT a few months later, after another more mild attack, and sat in another office. After explaining my story and sharing my test results from the other ENT, this doctor looked at me with pity and explained that I likely had Meniere’s Disease. I was like what is that? He said it’s about excess fluid in your inner ear. He told me that a lot of his patients with it go into deep depression because of it.
Something about his eyes told me that my life would never be the same again.
Chapter 4: The Emotional Fallout and Research
I don’t think I was emotionally ready for it and I kind of pushed it aside for a while until I had another mild attack. Then I had to stand up and face it again and say Ok. This isn’t going away. I need to do something. I started researching.
Essentially, your sense of balance comes from the interaction of 3 bodily functions: 1. Your eyes 2. your inner ear 3. Your brain. Your inner ear is basically like your body’s level. If you have ever used a level to hang a picture, that little bubble is the function of your inner ear. It tells your body where you are in space. It works with your eyes in combination and your brain interprets these signals. When your inner ear and eyes are giving your brain conflicting information, it causes vertigo.
Meniere’s Disease is a very confusing disease. It’s not one that you can diagnose through a certain test. It’s a disease diagnosed through the process of elimination. To make it more confusing, there are a few other diseases and issues that have similar symptoms and everyone’s symptoms vary. It’s like chasing a moving target in the dark.
Some of the main symptoms however are 1-2 major vertigo attacks a year, ear fullness, ear ringing (tinnitus), and loss of hearing in the low tones. Check all of those for me. The list below is full of all the possible symptoms, although again, it’s different for everyone. You might get several at once, or just one at a time, or for a while, none at all.
I decided I needed a bigger gun so I found one of the best specialists in the state and made an appointment. Seeing my 3rd ENT in a couple of years is a lot but I learned from my wife, that you need to be your own advocate in our health care system and if this is something I am going to battle for the rest of my life, that I wanted the best I could find and someone I could ride with.
I had been keeping a journal of my attacks and what I was feeling, eating, drinking, etc around them. I tried to find any pattern. I went to a nutritionist as one of the first things they suggest is going on a low salt diet as too much salt is said to increase the amount of fluid in your inner ear. After some trial and error, I have figured out that salt is not as much of a trigger for me than it is for other people. I still try to not eat too much of it and I have learned the hard way as to what to avoid.
I tried to think about my entire health history as to why this might have happened. That’s the other thing, no one really knows what causes Meniere’s. There are theories about genetics, auto immune issues, sinus/dental issues, the wrong kind of ear infection, etc but I really have no idea. It could be my frequent ear infections eventually caused damage. It could be the fact I did have some dental work done near my sinus area. There are some theories tying TMJ to Meniere’s but I don’t seem to have that.
Arming myself with this journal, I went to the 3rd ENT and realized I made the right choice. This clinic definitely is better suited for my needs. I got another hearing test that was a lot more detailed. The ENT’s personality is exactly what I needed. He is a direct communicator and doesn’t sugar coat anything. I decided I needed that. They got me prescriptions to a few things. Finally, I felt like I had a better plan.
I found some support groups on Facebook and tried to find any information I could. It was dark. There are people that go deaf. There are people who cannot function in daily life and cannot work. There are people who cannot drive. There are people who lose relationships and develop depression and anxiety. I literally could not find any positive stories.
I found out they thought that Van Gogh had Meniere’s and historians theorize that it might be why he cut off his ear. It definitely explains the movement in his paintings.
They also think that Martin Luther had it. The Glee actress Naya Riveria also likely had it and had an attack when she drowned. The artist Jessie J has it. UFC owner Dana White has it.
Chapter 5: Anxiety
This sent me down a path of anxiety. I had never had anxiety in my entire life and now I was feeling it. I was afraid of going out in public. I was afraid of doing things like going out to dinner because what if I had an attack? I didn’t know when I was feeling “off” if it was something I should push through or not? It was confusing and scary.
Then there was football. Could I still play? Would this change me? I have always been extremely independent and the idea of not being able to function scared the crap out of me.
I have been an athlete my whole life. Even with my knee injury, I felt more control because there was an MRI, a surgery, physical therapy, a plan. It was long and hard but there was a cause and effect and it was in my control to work on it.
What happens if I have no control? If there is no simple Xray and plan?
Who am I if I cannot control my own body?
The anxiety started getting worse.
I went to the airport, which I now know can be a trigger for me (not the plane but the actual airport with over stimulus), and I was scared. I was crying and sweating and terrified that I couldn’t get on that plane and travel down to not only do something that I love, but something that makes me, me.
I was able to scrape myself together, get on the plane, and practice was fine.
But when I got home I knew I had to talk to someone. I have used therapy a few times in my life for various trauma and issues and it’s been helpful before.
Chapter 6: Therapy and Plans
I made an appointment with a virtual therapist due to Covid.
After a few sessions with the therapist, I started feeling better. She gave me tips in how I could tap into tools I had already actually developed in other areas of my life, to help ease my anxiety. I realized that I had basically three forms of anxiety: 1. The fear during an attack 2. the fear that an attack will come at any moment 3. the fear that I won’t be me anymore.
After some work and trial and error, I have eased each of these 3 areas.
Then I got a secondary diagnoses of Vestibular Migraines when I explained to my ENT that I sometimes was getting headaches and sensitivity to light in between Meniere’s attacks.
This realization was key because I started to understand that my symptoms were coming in phases. If they were coming in phases then I could start planning for each phase and what I do in each phase. For me, and my personality type, having plans and tools I can use for when these things happen, did a lot to alleviate my anxiety.
I now understand that I get 1-2 major attacks a year. The major attack lasts around an hour but it effects me for a weeks after.
I know understand that in between attacks, I might get a Vestibular Migraine, which is not a normal Migraine and also not related to football to be clear. It’s a nervous system issue which causes migraines but also it’s own form of vertigo which is less intense than Meniere’s. A lot of Meniere’s patients also have Vestibular Migraines.
I now understand the different feelings between the two and what I need during them.
My medication, as well as numerous supplements has helped. I bought a Hero pill dispenser that auto dispenses your doses daily which has been helpful called Hero.
But I think the thing that has helped me most is a book that I found on how your brain’s neuropathways work. It is called Rock Steady by Joey Remenyi. Because Meniere’s is a problem between your ears, eyes, and brain, and because Vestibular Migraines also have a brain component, it makes sense to look in this area. I also figured out quickly that anxiety and stress play key factors not only during an attack but in and around them. Too much stress can cause symptoms.
This book talks about how we all actually do have inner sounds our body makes but our brain tunes them out as not important and that’s why we do not usually hear them. When you having ringing in your ears it’s because your brain is sensing that something is happening and it’s a survival reaction. It taught me some exercises I could perform so if I had ringing, I could calm myself down and it usually went away.
I am lucky in that my ringing is usually just around the actual episodes or if I am feeling off. There are people where their ringing never turns off. 24/7 they have music in their ear and some people have even picked up radio signals. I am not sure how that works but it sounds terrible. They have to get white noise headphones to try to sleep or certain hearing aids.
My ear fullness seems to also be based on episodes where others have it full time. It does make me grumpy when it happens though. It sucks when you feel like you are in a tunnel and cannot hear clearly but the book also has given me some exercises for this as well.
I have armed myself now with specialists, medications, supplements, exercises, and tools, in order to combat this.
Chapter 7: Football
And finally what has given me the answer to understand if I can still be me, is football. There have been other points in my life where football has saved me and it has again here. My relationship to football has saved me mentally when going through all of this. I was able to get back on the field and when I am on the field, I feel like me. It has made me feel like I will always still be me, even if I have to make adjustments to my daily life.
I feel free on the field.
I now have things down where it’s not perfect but I now how to treat myself and my functionality at the moment I think is a lot better. I would say that one good thing is that this has taught me to be in touch with my body in a much deeper way than before. I listen to myself. Naps have been a lifesaver. Taking breaks. Walks. Water. Simple things help and add up when you really listen to yourself.
I realized that I am not Meniere’s. I am still me. I am still independent. And even if in the future things happen, I know I am capable of facing them.
It is easy in life to ask why me but then again why not me? I had this dream when I was child. In my dream I am walking on a map that kind of looks like a pop up book in that it turns 3D. I know where everything is, all the mountains and lakes, and valleys. Then God flipped the map upside down. I didn’t know where anything was anymore. I was lost and cold. He took my hand and let me through all the obstacles and to an open meadow. He turned to me and said, “Now you must also help my people as I have helped you through.”
That has stuck with me my entire life.
If this small story, of which I might just be in the early chapters, can help other people, than I will write about it.
Here are a couple of videos where people explain their experiences with the disease.