The Night That Changed My Life
One perfectly normal night in April 2016 I went to bed feeling healthy. I turned over in my sleep in the middle of the night and felt hard, room spinning vertigo. I was instantly nauseous and vomited for the next few hours but, by late morning the next day, I felt mostly recovered. As long as I was upright I felt normal, but if I laid back I felt hard room spinning vertigo again. I had what seemed like textbook Benign Paroxysmal Positional Vertigo (BPPV). BPPV happens when calcium carbonate crystals located deep in the inner ear get knocked out of position. These crystals usually float in a gel like substance and are there to let your brain know where you are in space. When they become dislodged they can travel into an ear canal and send false signals of movement to your brain resulting in spinning. I was unable to get in to see my primary care physician so I made an appointment with a nearby ENT. The ENT confirmed BPPV and completed an epley maneuver (where they roll you across a table to reset the crystals in your ears). This usually immediately corrects BPPV, but when I sat up, I felt dizzy. Not hard room spinning vertigo but, overall dizzy. This scared me because I felt normal when I was upright before the epley. The ENT decided to send me to a dizzy clinic where they completed a series of vestibular and balance tests and concluded that crystals got caught in my posterior ear canal during the epley maneuver. They said it happens sometimes and that they could fix it. I saw them three days a week for the next three weeks for a variety of epley type procedures in an attempt to reset the crystals but, their procedures didn’t work. In fact, the more procedures they did, the dizzier I felt and the more symptoms began to appear.
Let’s Talk About My Symptoms
The worst symptom for me was that I felt too much motion every time I moved. That sounds like no big deal but I can’t begin to explain how terrible it feels. Walking felt like whirling and the ground felt unsteady below me, like walking on a boat or on a floor made of marshmallows. It was so uncomfortable I mostly stayed as still as possible but, even that didn’t relieve my dizziness. While sitting perfectly still, I had the feeling I was rocking and swaying. While standing perfectly still I’d suddenly feel a dropping sensation. You know the feeling you sometimes get right as you’re falling asleep where you feel like you’re falling? That’s the dropping sensation that would continually come out of nowhere.
Have you ever been sitting in a row of buses and one bus begins to move and for a moment your brain cannot distinguish if your bus is moving or if it’s the bus next to you? I was in that constant state of confusion when I moved and when I saw something moving. My brain couldn’t determine if I was moving or if it was the object I was looking at. Feeling like I was moving while I was sitting still made me have to constantly react and have to brace myself from falling when it wasn’t really happening at all. I had difficulty focusing on and visually tracking objects and had increased dizziness from seeing moving objects like ceiling fans, trees swaying, water rippling, computer scrolling and tv screens. Moving objects appeared to have a stop start, glitchy, robotic motion.
Along with the dizziness, feeling too much motion & confusion I had pain at the base of my skull. I had sensations of temple squeezing, brain zaps, head tingling and crawling (like bugs crawling under my scalp). I had head pressure, neck pain and jaw pain. Sometimes the jaw pain hindered my ability to talk and to chew. I had ear pressure, ear popping and ear ringing that fluctuated in volume. Sometimes it was quiet, other times it was screaming loud. I had heat intolerance and almost constant nausea. I felt physical pain from the scent of fragrance, cleansers and candles. I had pain from natural light and from noise. Hearing loud sounds would trigger that startling dropping sensation. I had constant ticks and twitches in my head, eyes, lips, face, hands and legs. I had painful spots (called allodynia) that felt like bruising all around my face and head. I had foggy vision with areas of my visual field blacked out. I was weak, so weak talking felt like an effort. I had positional vertigo. I couldn’t lay flat, tip my head back or down without hard room spinning so I held my head ridged every day, all day… for months!
Except to go to the doctor and to attend a family birthday brunch, I didn’t leave my house for 3 months. Because when walking feels like whirling, it’s SO hard to function. I was too dizzy to drive. Just walking to the end of the driveway to get the mail made me nauseous because of the exaggerated movement I was feeling. I tried SO hard to hide the extent of how bad I was feeling from my friends, family and my partner fearing it would be too much for him. But, by the end of the third month I was drowning in symptoms. I was drowning in depression and anxiety and I was losing hope. I wasn’t dying but I was so miserable that, for the first time in my life, I wished I was.
How I Got Diagnosed
I feel so lucky to have landed with doctors who heard and believed me, doctors who could see my symptoms because explaining some of them sounded strange even to me. But, they could see the ticks and twitches and the rapid weight loss. They could see nystagmus (eye rotation that happens when you’re spinning & when your brain thinks you’re spinning even when you’re not) and they could see test results that verified my complaints, for that, I am thankful. But, even with the test results, they had difficulty accurately diagnosing me. Here’s what’s important about that… doctors can’t successfully treat you without a diagnosis. So while they pondered or had me try a treatment or passed me on to the next specialist, I continued to suffer.
It took 3 months, 5 doctors, 4 faulty diagnoses and a load of uncomfortable procedures to finally receive an accurate diagnosis and treatment plan. I lost 17 lbs. while I waited for diagnosis. At 100 lbs. on a good day, that’s nearly 20% of my body weight! I nearly lost my job. Doctors said scary things during that 3 months, things like “We’re going to look for a brain tumor,” “maybe it’s viral,” and “I think you have early onset MS.” I didn’t have any of those things. Finally, after a round of antiviral medication didn’t help me a doctor said “I want you to see a guy in Tampa.” That’s when I drove an hour from my home to meet my 5th doctor, a neuro-otologist & skull base surgeon who I have the deepest admiration for. Doctor Danner at Tampa Bay Hearing and Balance in Tampa, FL finally diagnosed me with Vestibular Migraine. Vestibular Migraine! I mean seriously…what!? I had SO MANY symptoms…really weird & debilitating symptoms but never a headache. In fact, at that moment, I’d never really had a headache ever in my life and I have migraine. A rare and variant form of migraine. My symptoms were not episodic and they were not dizzy spells. I didn’t “get migraines” with dizziness. I had 24/7 dizzy torture…every day, all day for months. Like somehow a migraine switch turned on in my brain and I couldn’t turn it off. If you take nothing else from my story understand this, migraine is not a headache… a headache is just one symptom of the neurological condition called Migraine.
There are many different types of migraine and seemingly endless ways to suffer from them. Migraine needs to be rebranded. It is not just the worst headache ever. Migraine is a debilitating neurological condition for which there is no cure. Migraine disrupts normal neuronal activity. Think of it as an electrical storm in the brain. Symptoms vary depending on where these storms of abnormal activity occur in the brain. My migraine disrupts communication between my brain & vestibular system & makes all of my senses feel amplified and like they’re not working simultaneously together ever. When the system is disrupted, balance, control of eye movements and sense of orientation in space are all adversely affected. It has made my brain hyper responsive to movement, light, noise, chemicals and scents. Even now, with my symptoms under control, the world feels brighter, louder, more fragrant and busier. On the evening of my diagnosis, 3 months after my 24/7 symptoms onset, I got my first “migraine” (the worst headache ever that lasted about 4 days start to finish) just to add to the fun.
My Treatment Plan
My treatment plan includes three well outlined strategies: a preventative plan, an abortive plan and a rescue plan. My preventative plan is the most detailed & includes supplements, diet restrictions, exercise to restore balance, adequate hydration, a regular sleep schedule and a preventative medication. I follow a liberated Heal Your Headache diet and I was strict with it until I determined my food triggers. My everyday supplements include magnesium glycinate and threonate, ginger and turmeric and B complex. Each one is taken with purpose to help suppress a specific symptom. For example ginger and turmeric help with pain and B Complex & magnesium threonate help to minimize fatigue caused by my preventative medication as well as brain fog. My abortive plan includes a triptan and an anti-nausea medication just like an abortive plan for more typical migraine would. My rescue plan includes a low dose benzodiazepine. I used it short term in the beginning as a vestibular suppressant, to dampen dizziness. Now I use it to kick out dizziness that occasionally creeps back in. After 3 months of being so dizzy that I was unable to leave the house and another two months of implementing my treatment plan, it slowly began to work and I found relief… finally! Dr. Danner saved me and I will forever be grateful to him for it.
My Life Today
I have had Vestibular Migraine now for more than 2 years. I work full time as an Early Intervention Specialist and I live an active life with my sweet guy and our three dogs. Walking no longer feels like whirling, my weight has stabilized and my symptoms are less severe, but I’m not cured. I still struggle to suppress symptoms every day. I still have daily ear ringing, ear pressure changes and popping sensations. A year after symptoms began my ear symptoms moved bilateral from only my right ear to my left ear as well. As a result, in 2018 my neuro added Meniere’s disease to my VM diagnosis. Both are very closely related (but, that’s another post). I still can’t tip my head back or upside down (to blow-dry my hair) without dizziness & nystagmus and I still get vertigo if I lay on my right side but, I’m working on it. I have dizzy moments usually in busy, noisy, fragrant or hot places or after eating hidden triggers but, I am no longer dizzy all the time. Yay! The head pain part of my VM is episodic and comes about one to three times a month.
I found support and people just like me on Facebook. That’s also the place where I met some of the most amazing and strong men and women fighting their own migraine battles that I now call my friends. I share this blog with four of them. I’ve learned that vestibular migraine is a fairly new diagnosis and because of it doctors are not swift in reaching diagnosis. Most vestibular migraine patients wait months for diagnosis even though it’s the second leading cause of dizziness. Let that sink in. Vestibular Migraine is the second leading cause of dizziness yet we… wait… months! Let me be clear in saying I’m in no way bad mouthing doctors. Doctors saved me and honestly, they can’t know everything but, because of my personal experience, I am passionate about raising Vestibular Migraine awareness and helping others who are still drowning in symptoms to minimize the days they spend suffering.
If you have migraine or vestibular migraine, please feel free to follow Migraine Strong on Instagram & Pinterest or join the group Migraine Strong over on Facebook where you can talk with me (and the rest of the Migraine Strong team) directly or message us right here anytime. You can also find me guest posting on The Dizzy Cook blog once a month baking up yummy head safe treats. If I can help you, let me know how. Xo
Photo credit: Late Flower Photography
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