This week I had the absolute honor of meeting and working with Johan Galeano. I took the opportunity to ask him a few questions to better get to know the person behind the new Podcast series Vestibular TALKS on YouTube.
Johan was in his prime, working a job he loved, excelling in his company, incredibly active, traveling a lot and enjoying life to it’s fullest when he was met with his vestibular condition that has changed his life completely. I got to get to know Johan and his experience, and understand why he is so driven to help spread awareness and I wanted to share his answers with y’all.
A: Johan, introduce yourself, who are you and where are you located?
J: Hello Alex, my name is Johan Galeano, I was born in Medellin Columbia, however I currently reside in Calgary Canada.
A: Based on your profile and your focus, I’ve gathered you have a vestibular disorder. Could you elaborate a bit on your specific diagnosis?
J: Yes, you are correct. The many doctors I’ve seen are still debating on which vestibular disorder to diagnose me with as all vestibular disorders share many similar symptoms.
Some of the common vestibular disorders known are Vestibular Migraine, Vestibular Neuritis, Meniere Disease, BPPD and PPPD.
A: Is your specific condition a result of an injury, illness, or simply an unspecified migraine subtype that presents with vestibular symptoms?
J: Honestly, it’s hard to exactly pin point what may have caused it. I had always been very active through my life; I have had motorcycle accidents and concussions when I was younger but I “healed” quickly and never really paid much attention to any lingering symptoms.
There is also a history of migraine in my family as my mom suffers from migraines. I used to get headaches sometimes but I always tried to dismiss them. However, this one time around in April 2019 the headache and the “weird” symptoms came and stayed for a while now.
A: How long has this been present in your life?
J: Since April of 2019.
A: Were there any signs during your early years – childhood/teen years – that could have been precursors to the vestibular condition you experience today?
J: Excellent question, Alex. I always took pride in being healthy and strong so when this hit me “out of nowhere” it was a shock. However, lately I’ve been thinking about the warning signs my body gave me through the years. For example: I could never watch a 3D movie because I would feel nauseous, or even playing 5 minutes of virtual reality games would make me want to throw up. Riding roller coasters and even a Ferris Wheel would make me feel sick, but I always thought that was normal for everyone so I dismissed those symptoms.
I also started to get light headed while at the gym running on the treadmill but then would say “oh that’s probably normal.” I started to have visual disturbances like seeing flashes of light, auras, halos, dots and spots, but I assumed it was just my eyes being tired. I also started getting more and more frequent headaches but would try to ignore them until this year in April when my life completely changed.
A: You say your life completely changed in April, can you walk me through that and the emotions that go with it a bit?
J: April was when everything hit me at once, the symptoms all came together and I woke up with them all happening at once – my head spinning, headache, neck tension, ear pain, ringing in the ears.
My life changed completely that day because I was extremely active and I would travel and I worked in sales with traveling being part of my job that I absolutely loved. I would drive for hours and spend a lot of time in airplanes. I used to love going camping and to the beach but this has limited me so much I can barely even work now.
I manage to work a few hours, but it’s changed me so much. I don’t do sports anymore, I got into an airplane a few months back and the pressure change made my ears feel like they are going to explode and its terrifying. I’m now afraid of flying because of it.
I used to love going to the movies and watching TV and I can’t even watch TV anymore. I tried to watch a TV show and my eyes don’t follow the images any I start to get nauseous and dizzy so I haven’t been able to watch TV since April.
I basically only eat grass and water and its horrible.
My social life went down the drain. I wasn’t much for bars and clubs but I still enjoyed going out to listen to music with friends and I haven’t been able to do that in months. Managing relationships can be incredibly difficult as well. The intimate and personal aspects of relationships become obsolete when my main focus has been reducing and avoiding triggering symptoms and pain.
A: What are the main symptoms you experience?
J: My main symptoms include a headache in the back of the head, dizziness, unbalance, ear pressure/fullness, visual disturbances, photophobia, sound sensitivity, nausea, neck pain and stiffness, and back pain. I now also have anxiety but I’m working on improving all of those symptoms.
A: What treatments, therapies, and lifestyle changes have you implemented into your life that you’ve found to be beneficial either to your mental health or in addressing symptoms and or frequency of your vestibular condition?
J: I have tried many treatments and I’ve spend around $12,000 trying to find relief and answers. I’ve tried many different doctors, ear testing, vision therapy, naturopath, acupuncture, chiropractic care, upper cervical treatments – NUCCA, massage therapy, and vestibular physiotherapy.
I also changed my diet completely – no gluten, no sweets/processed sugars, no alcohol. I follow a modification of Keto and Paleo diets as well as the anti-candida and anti-migraine diets.
I’ve bought dozens of books about neuroplasticity, headaches, vestibular issues, and positive thinking. I pray to God and meditate a lot; I exercise and do Yoga as well to the best of my abilities, all while working with pain management.
A: You’ve developed a platform called “Find Your Chappiness” that brings awareness to vestibular disorders and spreads encouragement through your Instagram page. With the new addition of “Vestibular TALKS” featuring voices from around the world, you’re making some great strides to bringing awareness to a subtype of migraine that doesn’t get much attention.
How did you decide on the name “Find Your Chappiness?”
J: The name comes from one of my Pitbull dogs I adopted from a local shelter. Her name is Safari but we call her Chapi sometimes. She comes from a terrible background. They used to abuse her and force her to breed in order to sell her puppies. She was underfed and spent many years living inside a cage; she was tortured and physically abused.
When we rescued her, she looked broken and we didn’t think she was ever going to be able to enjoy life… but in a matter of months, with lots of love and caring attention, she completely changed. She started to smile – lol yes she smiles – and she became very loving to people and to other animals. She now lives a happy life and she always wants to play.
Someone said to me “wow look at how different that dog is now. So full of happiness,” and I said “no she has Chappiness.” Her resilient spirit showed me that we can overcome any situation with the right mentality and right environment (love, god, nutrition, and support).
A: What is your mission with this platform and the Vestibular TALKS series?
J: I’d like to create more awareness about chronic illness and health disorders. Many people are living in difficult and challenging situations and haven’t been able to get a proper diagnosis and proper treatment so the world can feel really lonely and dark during those times. But I’d like to show them that they aren’t alone. We can all support each other and overcome difficult situations.
Whether it is cancer, migraines, vestibular disorders, fibromyalgia, or autoimmune conditions we all are carrying our own crosses but we don’t need to fight alone. We can all support each other and share with each other tips that have helped us heal or improve.
A: How has taking on the responsibility of bringing awarenss and helping others helped you, or forced you to grow and step out of your comfort zone?
J: It’s been challenging.
Many people are afraid to talk or simply don’t want to because now that they are in a “better” place they don’t want to bother looking back at their dark times and maybe relate to someone else going through the acute stages of their condition.
I am trying my best to remain positive and optimistic that there are still people out there that want to help me and work together to make the world a better place. People like you, Alex, that without hesitation said “Yes, I’d like help, where do we start?”
A: From your perspective, what are some misconceptions of areas where awareness really needs to become a focal point for vestibular disorders? And where does this awareness begin, is it something we as a collective of people with these conditions must organize and work to be heard or does it begin with the doctors and a systematic change to how we discuss and treat migraine/vestibular disorders as a singular health concern rather than a whole body and lifestyle concern?
J: Awareness starts with compassion. Compassion with ourselves and understanding that healing is a process, a process that takes time, patience, and hard work.
Also, compassion comes from our friends and family to not judge us or make us feel guilty about our new limitations.
And compassion from our doctors where they need to understand what we feel is real and is not just caused by anxiety. Doctors need to validate our concerns and emotions and try to understand us to the best of their abilities.
Awareness also comes with knowledge, that’s why it is so important to educate ourselves and others about the conditions affecting us and our loved ones.
A: Where can we learn more about you and the work you are doing?
J: You can see my work on my YouTube Channel FINDYOURCHAPPINESS or on Instagram @ Find_Your_CHAPPINESS. I’m looking to also make the interviews available on other platforms such as Spotify in the near future.
A: Is there any advice or final thoughts you’d like to leave with readers?
J: Yes. In order to heal we need to believe we are healing. Don’t only focus on the dark side of your illness. Focus on what needs to be done to start experiencing healing. And there are going to be some better days, some dark days as well, but remember that you are a warrior and your body is designed perfectly even though some days it may not feel like it. Allow your body, mind, and spirit to heal by feeding it the right thoughts, the right foods, and the right treatments. God Bless us all.
As a part of his new podcast series, Johan is looking to spread awareness and reach people across the globe by interviewing people with vestibular disorders and related conditions.
Getting to interview Johan has really made this experience well rounded and allows viewers to see a bit of a behind the scenes.
In my Skype interview for episode 2 of Vestibular TALKS we got to really dig deeper into how I experience life with migraine. We touch on how my condition developed, what life was like before migraine and how it is today, the dangers of diet culture as the main solution for migraine, and a shared hope to educate and help connect with people across the world who need support and connection.
Please check out our interview here:
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