This is my vestibular migraine story - how it began, what my symptoms were, how I was diagnosed, and how I managed to cope and find my path to healing.
My Vestibular Migraine Story - How It Started
In March of 2016 my husband and I took a trip to Japan, Thailand, and Hong Kong. While in Thailand, I started to feel lightheaded at certain moments, but I figured it was because of the heat and the jet lag. When we arrived home from our two week trip, I noticed I still felt off, but powered through by going back to work. The next weekend we left for a wedding in Arizona and I noticed on the plane that my ears were killing me - it felt like I was coming down with a cold. I spent the weekend sick and when I got back home, the dizziness started to get worse.
I eventually saw my PCP who said I was just stressed and tired. She prescribed a steroid pack and sent me on my way, but I knew something was off. I contacted one of “D’s Best” ENT’s and made an appointment. By the time I saw the ENT, it had been almost a month of minor dizziness that would come and go, but still enough to make me uncomfortable driving. I remember one time I drove all my coworkers to lunch and as I pulled into the parking spot I slammed on my breaks - I felt as if we were still moving even though I was stopped.
Wanna talk about invisible illness? In this photo I felt so sick and lightheaded, like I was about to pass out. This was the last picture I took for the next 6 months.
The “D’s Best” ENT ran a few tests and stated I had no hearing loss so it was most likely vestibular neuritis and it would go away. After pushing him for more answers, he sent me to a chiropractic clinic that focused on vestibular rehab. They ran more tests and said I had a slight weakness in my left ear - they confirmed either vestibular neuritis or a perilymph fistula. I did my exercises diligently, but only seemed to be getting worse.
Walking on Marshmallows and Rocking on a Boat
On my second check up with the ENT, I had regressed so much I could hardly work. The floor felt as if it were moving up and down and I had to climb my way on every step. Sometimes it was like walking on clouds or marshmallows and I got an odd "floaty" feeling in my head. I couldn’t look at a computer for more than 5 minutes without getting ill and my memory was shot. I couldn't think of simple words that used to come so quickly. My boss at the time was very understanding and allowed me to work from home for a week so I could try to rest. The ENT prescribed me a very strong steroid 2 week steroid taper and I continued vestibular therapy. All of a sudden I felt almost normal! I was acing my dizziness tests at the vestibular clinic.
Then my taper ended and I plummeted back to where I was before. My ENT had run out of options and said my illness was beyond his expertise, I would have to go somewhere else. I pleaded with him to sign my short term disability forms, which were highly questioned by my workplace since I had no real diagnosis and technically no longer had a doctor. At one point, I remember eating dinner with my husband and everything around me started moving severely. Then the violent spinning began. I could hardly keep my head up or keep anything down. I thought for sure I had a brain tumor. What else could cause this kind of hell? We went straight to the ER where after a clean MRI they diagnosed me with “vertigo” and sent me home with meclizine.
Finding The Right Vestibular Migraine Doctor
When I told the vestibular rehab clinic what happened, they asked their neurologist to look at my MRI and he suspected I had a perilymph fistula. They stated I would most likely have to get surgery and would be deaf as a result. At this point I went on a grand search for a new doctor. Another neurologist told me it was stress and to give it some time. A few of the highly recommended ENT’s declined to see me after being faxed my lengthy paperwork. I had one hope - a neurologist that specialized in unexplained dizziness at the research clinic, UT Southwestern.
Unfortunately there was a 10 month wait to see him, I still could not drive or really even function for that matter, and I was slowly running out of time that I could legally be away from work. I pleaded with receptionists to let me in and called constantly to check on cancellations with no luck. Finally I reached out to friends on Facebook, sharing my story to try to get any help. A close friend called some connections and got me into Peter Weisskopf, an ENT at the Mayo in Arizona.
Misdiagnosed with Perilymph Fistula
Because of the potential perilymph fistula diagnosis, my husband made the 16 hour drive with me and the dog in tow. After a day of many highly professional vestibular tests, I met with Dr Weisskopf in hopes he could help me. He looked me straight in the eye and said “All your results came back normal. You have no weakness in any ear. You have vestibular migraine.” I laughed. No, you’re wrong, I don’t get headaches. I’ve never had a migraine in my life...clearly if I'm calling it a "headache" I hadn't! He explained that a vestibular migraine was different in that many didn’t experience the severe head pain, but had light sensitivity, vertigo, ataxia, and dizziness. He then said I needed to go back home and find a good neurologist that knew how to treat this. Back to square one…but at least I had answers! Another miracle happened while I was in AZ - a friend’s mother happened to work with the “dizziness doctor" at UT Southwestern, Dr Beh, and emailed him about my case. He made an effort to squeeze me in over lunch one day.
After all this time, I didn’t place much trust in doctors so I was curious if Dr Beh would agree with Dr Weisskopf’s diagnosis. He proceeded to run some similar vestibular tests and finally came to the same diagnosis - vestibular migraine. As he explained, some people are always prone to getting them, but they can be triggered by many things - stressful events, hormonal changes, a head injury, etc. He also said many people who get motion or car sickness are also prone to them. Considering I always got car sick and had been under major stress with my job for the past 2 years, I had hit a breaking point that unleashed this terrible chronic illness. He gave me many options. I could do topamax, nortriptyline, or start with ativan and then try a more natural route.
Treatment Plan
My mom, an RN for 20 years, was terrified of me being on ativan, but Dr Beh assured us it was such a small dose (.5mg at night) and we could wait till things calmed down and then wean me off. I started supplements, which he stated would take about 3 months to start working - 2 Migrelief (which contained magnesium citrate/oxide, B2, and CoQ10), and vitamin D in 5000 IUs. I supplemented with magnesium glycinate 240mg in the evenings.
He gave me timolol eye drops, a beta blocker, that absorbs quickly and is such a small dose that it doesn’t greatly affect blood pressure and can be used as an abortive. He also asked me to get FL-41 lenses and limit my stress level at work. I started to feel a bit better after a month and returned to my job, but it was clear I wasn’t ready for the amount of work I returned to.
My full vestibular migraine treatment plan is worth a read!
Adjusting to a New Life
Over the year my company slowly moved everyone on my development team to other brands until it was down to just me. I was overwhelmed, and the company hadn’t responded to my pleas for help that began the year before I started feeling bad. Then all hell broke loose when I returned from short term disability. I lost my great boss and was transferred under a department that was not familiar with my brand.
They moved my desk to face a busy walkway under bright fluorescent lights. On top of the outside triggers, one of the new people I had to work with was verbally degrading to me, calling me "stupid" during some of our discussions. I struggled to keep up with my work and my health. Coworkers would joke about my colored FL-41 lenses and I laughed it off even though it stung every time. I started seeing a counselor to help me manage what I was feeling with a new chronic illness and the struggle to keep up with a job that was challenging before I became ill.
The FMLA Process
I even took advantage of Cigna’s free call-in counselors. When I went for my follow up with Dr Beh and his awesome NP, Diana Logan, they advised me to take one day off a week for my brain to rest. All the paperwork was filed for FMLA and I looked forward to my day of not having to glance at a computer. Unfortunately HR continued to question my illness and were harsh on the requirements I had to meet. In fact, they first denied my request because they didn’t read the fax from my doctor properly. I spent a day trying to prove to them that the paperwork was correct. Since I looked fine on the outside, many questioned my illness, but they couldn’t see the times I had to place my fingers on the cubicles to steadily guide my way to the bathroom. With my decreased pay and having to call my insurance any time I stepped away from my desk, my stress levels skyrocketed and I could feel myself sliding back from any progress I had made.
I remember one particularly bad week where there were some brand changes and things got heated at work. At the same time, HR informed me some of my time off for intermittent FMLA hadn't been approved. It triggered my symptoms so much, I spent 2 straight days in bed, never once leaving. At that point, after much discussion with my family (and even a suggestion from my neurologist), I put in my two weeks notice. Many coworkers said “you’re so lucky” not understanding what it was like to give up the career you had worked hard for because you suddenly had a chronic illness that no one understood.
A Breakthrough with VM
About a month or two after I left my job, I noticed a huge change. I was able to drive again for short distances and I dedicated my free time to finding an exercise program I liked to do. Pilates and ballet were just as good as vestibular therapy for me, and helped my balance get back on track. I weaned off ativan and now only take .25mg for emergencies, usually after or around air travel.
After about 4 months I felt better, but not good enough for my liking. I continued searching for answers and found the Heal Your Headache book by Dr Buchholz from Johns Hopkins. His diet plan is based on the migraine triggers of msg, nitrites, histamine, and tyramine. Once I started following the diet strictly I noticed a difference in that I could go longer between dizziness episodes. At one point I had wondered if it was really working or just a load of garbage and I tested yogurt. I remember just a few minutes after finishing my meal I felt like everything was moving on me - yogurt was a trigger! The same yogurt that I had eaten almost everyday a few months ago was noticeably causing my dizziness!
For more information on the Heal Your Headache diet.
See how this migraine diet relates to vestibular migraine.
For more information on being diagnosed with Vestibular Migraine.
Recovery
I have gone from being bedridden to around 90-95% in a little over a year with limited meds and lots of lifestyle changes. Sometimes I occasionally have 100%, symptom free days! I'm fortunate to be able to travel and fly again, even internationally. While I still believe I could possibly be 100% all the time with a preventative medication, this is the perfect plan for me right now as I could potentially have children in the near future and most medications for migraine you cannot take while pregnant. I hope that my tips, tricks, and recipes can also help you to get to a place where your migraines are being managed successfully. I also hope that I can provide a safe space for you to learn and feel accepted so you don’t punch the next person that tells you they get headaches too.
How I "Cured" My Vestibular Migraine
While there is technically not an official cure for this disorder, I am updating this post as of August 2021 to share that most of my days are dizzy free, even after going through IVF and having a baby. While I do get some attacks here and there just from stress, not sleeping, or not managing my trigger load well, they are few and far between. Not only that, but they are SO much more manageable than they used to be. My bad days now were really good days a few years ago.
Can I completely go back to what I was doing before? No! I have to keep up with my diet although I've reintroduced many foods and don't have to be as strict. I continue my magnesium, other supplements, still get regular massage therapy, and practice CBT and mindfulness. But I can drive, workout, fly, and work without being miserable all the time. I hope you read my story and have a renewed hope that you can do this too.
More vestibular migraine posts.
