I was 30 years old and on top of the world when I became completely debilitated by vestibular migraine. Just returning from a trip to Asia and getting back to work, I was barely sleeping and stressed out. I had been working really hard for the past year to get promoted to a senior product manager at a large watch company. Although I was exhausted, I couldn’t miss any more days so I powered through even when I wasn’t feeling well. I had mild dizziness, a fuzziness in my head, but it was more annoying than debilitating.
First I tried my primary care doctor, who just said it was a head cold and I was probably stressed. I gave it a few more weeks until I realized this “head cold/stress” wasn’t going away and seemed to even be getting worse. At one point, I was driving my coworkers to lunch when I slammed on the brakes, feeling like I was moving forward…but my car had already been parked.
I bypassed going back to my PCP and went straight to an ENT. He ran a few tests and after he didn’t find hearing loss, he suspected I may have some kind of neuritis or infection. He sent me on my way saying it would get better.
A few weeks later I was sitting at dinner with my husband when I got hit hard with an aggressive spinning sensation. I couldn’t hold my head up or keep much down. We went to the ER where I was convinced I had a brain tumor. They found nothing on an MRI and sent me home with meclizine (Antivert) with a diagnosis of “vertigo”.
** While Migraine Strong writes about the latest in migraine treatments, this is not medical advice. We are patient educators and all information you read should be discussed with your doctor.
Searching for a doctor
It was suggested I see a neurologist so I looked up one that was highly rated in Dallas. She told me I was just stressed and had anxiety – that I should see a therapist. I saw a few other doctors who mentioned everything from depression to MS – all of them telling me it would probably just go away since I was young. When I returned to the ENT to let him know what happened, he suspected a neuritis and prescribed a high dose of a steroid. He also sent me to a balance center to work on vestibular exercises.
The dizziness center ran some vestibular testing – a VNG/ENG and VEMP test. Many with vestibular disorders hate these tests because they can make your symptoms worse, but they’re necessary to figure out if you have a weakness in your inner ear. The person performing my test messed up on one, the one where they blow air into your ear, and I actually had to go back to get retested – pure hell.
The tests showed I had a weakness in my left ear so they suspected it was either vestibular neuritis or a perilymph fistula. Nothing was ever mentioned to me about vestibular migraine. At this point, my mild dizziness had grown into a constant 24/7 state. I was forgetful, not even being able to recall the name of simple things like “computer” or “pen” at work. I could hardly stare at any screen for more than a minute without wanting to vomit. Scrolling on my phone was torture. Often it felt as if I was walking on clouds or in a bounce house. I went to vestibular rehab regularly – at least 3-4x a week. I started to feel a little bit better, but once I got off the steroid, all the progress I made went away and I felt even worse than before.
After about a month or two of having my husband drive me to these appointments and getting nowhere, I was fed up. We had spent thousands of dollars seeking answers, but no one could give me a solution. My manager at the time was really understanding, allowing me to work from home for a while, but we ended up having to involve HR as the weeks went by and I could still not drive. Since I didn’t officially have a diagnosis and “stress” would never cut it on an FMLA form, I went to the ENT one last time where he admitted my illness was out of his scope of treatment. He suggested a neurologist at UTSW, Dr. Shin Beh, who specialized in unexplained dizziness. The only issue with that was Dr. Beh had a 5 month wait list.
I had to beg this ENT to sign off on my FMLA forms so I could have 2 more weeks to figure it out. It was like pulling teeth and I had to constantly call their office to make sure they were working on the paperwork. Under the pressure of losing my job, I asked the dizziness center their honest opinion and they seemed almost convinced I had a perilymph fistula. They explained that I would need a surgery that would leave me deaf in the ear that I had the weakness, and even then there was no guarantee it would work.
Frustrated and hopeless, I made a plea on facebook for guidance. Many people suggested I go to the Mayo, but one of our close friends knew a neurologist who worked at the Phoenix location. He was able to get me into to see Dr. Peter Weisskopf, who is extremely familiar with perilymph fistula cases. We drove out to Phoenix since everyone had warned me that flying may forever damage my ears even further. I spent one full day in testing where my hearing, balance, and vestibular tests were performed again, but this time it was all done with better equipment by doctors and specialists.
Dr. Weisskopf walked in the next day and told me I had vestibular migraine. “There’s no way”, I thought. In my 30 years, I had never experienced a migraine – really bad headaches maybe, but never what I envisioned to be a “migraine”. Plus I wasn’t getting head pain! My symptoms were vertigo, light sensitivity, constant dizziness, ataxia, ear/head pressure and brain fog. He explained that there are many different kinds of migraine, and this one affects your inner ear which is responsible for balance. In order for me to heal, I had to break this 24/7 migraine cycle, but I would need a neurologist to do that. I was thrilled to finally have answers and by some miracle, Dr. Beh’s office called me the next day to let me know I could see him the next week.
Dr. Beh had me fill out a questionnaire that had to be at least 30 pages long. It had my entire medical history, my family’s history, and a checklist of symptoms that was so very long, I never thought it would end! After reviewing my MRI and reading through my survey, he also came to the same conclusion as Dr. Weisskopf. We ended up doing a few similar VNG/ENG tests to further confirm the diagnosis of vestibular migraine. I felt relieved to finally have a neurologist who understood me and wasn’t just telling me that I was “stressed”.
My migraine treatment
He presented several preventative options for me, but I explained that I was hoping to have a family in the next few years and was curious as to what that meant with medications. Instead of telling me it wasn’t possible, we figured out a base plan that would be fairly easy to wean off of when I was ready to have children. This included a very low dose of ativan, timolol eye drops, and the supplements – magnesium, B2, and CoQ10.
Within a few months I was already feeling a little bit better and decided to wean off the ativan with the intention of trying for a baby. It was then that I decided to look into natural treatments a little bit further to see if there was anything more I could be doing, especially if I couldn’t lean on a benzo to suppress my vestibular system. I tried everything, from massage and acupuncture to essential oils and chiropractic care. All of it helped to varying degrees, but it wasn’t until I found the Heal Your Headache book by Dr. David Buchholz that a light went off.
Although the title is deceiving, the Heal Your Headache book (and diet) is for all types of migraine, including VM. Eliminating foods based on additives and tyramine made sense to me, and I figured it was worth a try. At the time I ate a lot of avocado, yogurt, and nuts, so it was a tough change at first. I remember reading all the labels in my pantry and finding hidden MSG in almost everything…and here I thought I had been eating healthy!
A month or two into the diet, I still had not seen a major difference. I was fed up. Why was I putting all this effort into a stupid diet that was not giving me any results?! That evening I decided to try yogurt with my dinner. Within the hour, I had a bad attack where everything was moving on me again! I still had dizziness, but had not experienced a bad attack like that since before I was diagnosed. At that point I decided maybe there was something to this diet and I should probably stick with it a little bit longer.
It was really 4-6 months in that I noticed a big change. I began to have breaks in my dizziness and they would get to be longer and longer between each week. Finally, I could work out and drive again and I even felt more like my old self. As time went on I was able to reintroduce foods I missed and loved, like avocado. I figured out that walnuts, almonds, and yogurt are all big triggers for me. And I can get away with eating a lot of the “no” foods now that my head has calmed down so much. I’m an expert at reading labels, which is just healthier for my family overall.
Now I have mostly 100% days, with a few dizzy or “floaty headed” ones mixed in between. What I’ve learned is that vestibular migraine is a fairly new diagnosis, so there’s no single path to healing. It’s a lot of trial and error, as well as stepping outside your comfort zone. But it’s not necessarily a life sentence. Myself and several of my friends have recovered enough to live full and happy lives. And while I did end up losing my job because they weren’t willing to accommodate my illness, I found my way to a new passion.
I had been a member of Migraine Strong for a few weeks and was already well into my trial of Heal Your Headache when I realized I was tired of having to edit recipes or double check ingredients. The ladies did a wonderful job of providing ideas! But as sick as I was, I wanted to have an actual recipe given to me where I knew it was safe. I loved food blogs and cooking, but often got discouraged looking at beautiful photos that were chock full of ingredients I could no longer eat. Plus there wasn’t a website out there that had a positive outlook or natural treatments specifically for vestibular migraine. I longed for a site that felt like these fun food blogs I was reading, but geared towards someone with my illness. That’s how The Dizzy Cook was born!
The Dizzy Cook lifted me out of the depression that vestibular migraine and the loss of my job caused. I had put a lot of my self worth into my career and my social life, but in less than a year I had lost it all. It’s funny how life can change like that so quickly. I was lucky to find a different place to be social – through the Vestibular Disorder Association and through Migraine Strong. Several of my closest friends have come out of these groups, and they encourage me and support me through the ups and downs of what can be a horrible chronic illness.
If you’re lost or struggling with the loss of your job or even yourself due to migraine, know that we have also been where you stand and we are here for you!
Main photo by Megan Weaver.
8 thoughts on “My Journey with Vestibular Migraine”
What a beautiful story. Thank you for sharing. May sound silly but I do feel better after reading it. Helps me remember I am not alone and am well on my way to feeling better.
You are never alone, Nancy! Thank you for being such an amazing reader. 🙂
Thank you for sharing your story. It’s hard when your waiting for a proper diagnosis. When you’ve seen what feels like specialist after specialist and getting no where or brushed off with ‘vestibular neuritis ‘ cause they’re not sure what’s going on. But mostly how alone you feel, cause it’s not well known and ‘you look better/fine!’ Very hard as a sufferer to understand as well as the on lookers (family, friends, co workers). Good to know there is a light at the end of the tunnel.
Thank you for writing about your experience w what u were going tho Cuz My daughter’s bf of 7.5 yrs Started going tho all that y saying here & Its been hell for him & for our daughter not knowing what was happening to her loved one w so much confusion going on w him & him always feeling lik he should go lay dw after going from Dr to Dr & hospital & urgent care They found nothing…When he knew smthing was wrong w him he even had to stopped wking it was affecting him this bad but he didn’t give up on (HOPE) 🙏 Maybe now he can be @ more ease… “Glad” that he’s gonna be okay in x So happy to hear of your story cuz it’s been a nitemare for them…Thxs ❤🙏❤🙏
Thank you for sharing your experience! I was also diagnosed with vestibular migraines however, no tests were done since 2 years ago when I was told I have PPPD and possibly Meniere. I have been okay for more than one year but in June 2020 I began having violent attacks, different from what I have experienced before. Very frustrating! How could I find a local neurologist or neuro-otologist that can actually take my case more serious? I am struggling daily? I live in Southern California.
Try goggling neurotologist followed by the name of your county and see what comes up or ask your primary care physician for a referral. You can also search practitioners on VeDA’s website.
Jenn (For Alicia)
I just did a 2 year adventure of eliminating all sorts of diseases while I had classic VM symptoms. I finally saw Dr. Steenerson at The Stanford Neuroscience Center in Palo Alto CA. I have just started PT for balance and dizziness in San Jose and just started Gabapentin. Based on my response to PT and my myriad of symptoms It’s thought to be VM. It’s too soon to know if the Gabapentin will work. Unfortunately, it takes 2-3 months to get an appointment there and a referral is needed. The wheels turn slow but their equipment is state of the art and the doctors are very thorough and skilled.
Thank you for sharing your story! I was diagnosed two months ago after a slow descent into disability- couldn’t drive or do my job. I have vertigo attacks often and in between I’m dizzy and nauseous, not eating for days at a time. Luckily, I was referred to a neurologist who had me do an MRI and from the results of that and a discussion of my symptoms, came up with this diagnosis. She said I should go to an ENT to look at that side of things and he too gave me the vestibular migraine diagnosis. Now I’m in the stage where we find the right medications for prevention and come up with a plan.
I read your story every day. It gives me comfort reminds me that this illness is real and there is a way to cope.