If you follow me on Instagram, you’ve probably seen me post about migraines from time to time, more specifically vestibular migraines. I thought I’d finally take time to share a bit (or maybe more than a bit) of my journey with you. Perhaps you, or someone you know, are battling similar symptoms and struggling to find answers. After all, it was this journey that forced me to stop writing and blogging for 2.5 years.
My journey begin in January of 2014. I woke up one morning and felt very dizzy. The dizziness was unique in the sense that I could function in and through it. It felt like I was walking around drunk from too much wine. You know the feeling where you move your head one direction and it feels as though the room (vision) is slow to catch up? That’s the one! It was awful and there wasn’t anything that I could do to make it go away. If I stayed really still, not moving my head, I was okay. Sleeping was okay, but anything that involved movement of my head was NOT okay. Oy Vey!
At first I just thought it was a virus affecting me in a funny way and so I waited about five days before I began to slowly freak out. I called my mom (a nurse) and talked with her about my symptoms and their onset. She was worried that due to my age (30 years old at the time) and symptoms that it was the start of MS. So she sent me back to our family friend, a neurologist. I’d seen him in the past for traditional migraines that started in college, but hadn’t seen him for years. My traditional migraines went away after conceiving my oldest and are rarely an issue for me now. Which has been an incredible blessing!
After seeing the neurologist, he sent me in for a MRI with contrast, a hearing test (which I’ve had performed multiple times over my life because, due to an accident at birth, I’m deaf in my left ear), an Auditory Brainstem Evoked Response (ABER) test, and some blood work. All of which were mostly normal (with the exception of my hearing test, but that was to be expected). However, when the ABER and hearing tests were performed and a particular frequency of sound was hit it sent me into a dizzy mess. I was so dizzy that I had to put my head between my legs to prevent myself from being sick.
Following the results, I was given an anti-dizzy medication, a diuretic (MRI showed some fluid in my left ear) and vitamin D (my levels were on the low side). The doctor was hopeful that the combination of these meds would give me some relief. I began taking the meds and after several months, nothing had changed; I was a mess. I could no longer sit in church for worship because the loudness of the music sent me into a dizzy spiral and I stopped writing/blogging because sitting in front of the computer screen would intensify the dizziness, too. My life was slowly being taken over by these symptoms and it was triggering new symptoms – symptoms of anxiety.
Somehow I continued to function in the dizziness and newfound anxiety. Looking back I can’t figure out how. But I guess when you’re a mom, you don’t have much of a choice. Right?? You push through, always putting your family’s needs above your own. I continued to see my family doctor and as the symptoms continued to take over more and more of my life, I was sent to an ENT for a more extensive inner ear workup.
While I was having the workup done by the ENT, I also started to see a therapist on a weekly basis for the anxiety that had gotten so bad that I was having full blown panic attacks. My family doctor tried to put me on anti-anxiety meds, which I had REALLY bad reactions to – almost landed me in the ER twice! I began to feel hopeless. Nothing worked and no-one had an answer. I would plead out to God daily and although I felt His presence, I wasn’t getting the relief that I was praying for. There were so many days when I didn’t leave my house unless I absolutely had to and slowly I began to fear that this was just how I was going to feel for the rest of my life. It truly was awful and something that I wouldn’t wish upon anyone.
Finally after having the ENT workup done, the doctor suggested that I needed to see another doctor who specializes in the field of otology and neurotology, including hearing and balance disorders, chronic ear surgery, facial nerve disorders, and cochlear implants. He was concerned that my issue was a cracked cochlear. I was nervous for what was going to be found, but at this point I didn’t care – I just wanted answers! Convinced that I had brain cancer, I kept saying to my mom,
“There is something VERY wrong with me…the doctors are missing it!”
It was a very scary and trying time for me for many reasons. Aside from the obvious, I grew up in a medical family with lots of medical family friends and anytime I needed anything, someone always had an answer. Granted I was a pretty healthy kid, but I always had 100% trust in the doctors. I trusted that if something were wrong, I could walk into their office and walk out with a diagnosis and treatment plan. This 2.5 year journey of going from doctor to doctor with no diagnosis and treatment plan rocked my world. I still struggle with the fear that if something is wrong the doctors won’t be able to help.
We finally made it in to see the new specialist in June of 2016. I carried in all of my records from all of the testing that had been done. He took one look at the records, chatted with me about the dizziness and other symptoms (sound sensitivity, anxiety, panic attacks, shoulder weirdness), and asked about whether or not I’d ever had migraines of any kind and after listening to my story he said…
You are having vestibular migraines!
Um, WHAT?!?!? I’ve never heard of these. I’m not kidding when I tell you that I responded to him with, “No, you must have misunderstood, I no longer have headaches!” To which he explained that vestibular migraines come without traditional headaches. It’s all in the form of dizziness and sound sensitivity and when left untreated for a period of time turns into anxiety and panic attacks. OMGness!! That was ME!!! I literally almost broke down in the doctor’s chair with joy for finally having a diagnosis. So many doctors tried to tell me that I was just struggling with anxiety and although I was struggling with anxiety, I knew that it didn’t start there, but we just couldn’t get to the bottom of it!
He handed me a piece of paper (see image below) and told me that I needed to go on a migraine diet. He also scheduled me for a series of balance tests that would determine whether or not I needed any vestibular physical therapy. The balance testing was AWFUL! But the migraine diet – for real?!?!? A change in my diet was going to relieve my symptoms?!?
I was beyond skeptical and a little irritated, because although I am normally a “let’s try holistic approaches first before meds” kind of person, I was SOOO ready for some meds! I needed a quick fix for my 2.5 years of misery. (And yes, I realize there was nothing quick about that!) But he refused to give me any meds until after I tried the diet for 4 months. I underwent the balance testing (special shout out to my sweet friend, Andrea, for taking me, waiting through the long testing, and driving me home, because I was in no shape to drive after that!), started PT, and went all-in on the diet. And wouldn’t you know, within just 2 weeks of the diet, my dizziness was gone! GONE! 2.5 years of dizziness completely resolved with a change in diet. Now that diet is not for the faint of heart! It’s for real – HARD! But…WOWZERS! Of course it took my body another 6 months for my anxiety to calm down, but I couldn’t complain because I finally had answers and a (fairly) simple solution.
Whew! It’s been quite a journey and one that I don’t ever want to have to take again. After seeing the doctor for a follow up in November (2016) he said that I could most likely add some foods back into my diet, but I needed to give it 2-3 years. He explained that it took me 2.5 years to get myself into the migraine cycle, so I’d need to stay migraine free for the same amount of time to break the cycle. He also explained that the foods (although they may be triggers) didn’t start the migraine cycle, but they act like inflammatory inducers and keep the migraine going. I basically was walking around for 2.5 years in a constant migraine. Oh Boy! The diet hasn’t been the easiest, but it’s doable. I miss my onions (they are in EVERYTHING!), avocado, nuts, chocolate, and donuts the most. 🙂 Oh sweet Jesus, give me donuts…and lots of grace!
I share all of this because I know that God didn’t bring me through a journey like this to keep all that I learned to myself. I hope and pray that you aren’t suffering from the same symptoms, but if you are, I hope that my story will give you some helpful insights. Vestibular migraines aren’t very common, and are hard to diagnose, but that doesn’t mean that you aren’t struggling with them just like me.
Also I want you to know that God was 100% faithful through this incredibly trying time. I didn’t share much about my faith journey in this post, because it is long enough as is, but I will one day soon. There were so many God moments along this journey. Just know that no matter what you’re struggling through today that God is with you, He sees you, and He hears you. His timing is not always our timing as made obvious by my story, but that He does have a plan. I can’t say that I’m 100% healed, it’s still a daily battle to make the right food choices and sometimes I still struggle with the anxiety that began with these migraines, but God loves me and is with me and because of this I have hope for tomorrow.
Do you get migraines? Traditional? Vestibular? Ocular? Another type that I’ve never heard of? How do you cope? Have you tried the migraine diet? If you feel lead, leave a comment below. Please know that you are not alone through your journey, something I felt so many days. I’d love to pray for you.
P.S. Sorry for the long post. If you made it to the end of this novel, get yourself a cookie (or a donut) – you deserve a treat! 😉