My Vestibular Migraine Journey
If you have been following along on my Instagram over the last few months, then you have probably seen me talk about vestibular migraines. It continues to be the most talked about subject in my direct messages (DMs), so I wanted to put together a blog post about it. It took me about a month or so to really accept that I have a chronic health issue. I even tear up just writing that. I am in my mid-thirties and what I would consider very healthy. I never imagined something like this could come out of nowhere and literally turn my life upside down. As I am doing my research now, I realize all the signs were there. Migraines run in my family (in all shapes and sizes) and I have always suffered from motion sickness — two things that make me susceptible to migraines.
Looking back, I have had symptoms for about six months. I started noticing things like feeling faint, like I might pass out, or just getting nauseous from scrolling through Instagram, but I really wasn’t thinking much about it. Then, one Friday afternoon I stood up from being on the computer for a few hours and it hit me — I was so dizzy I could hardly stand. I immediately thought vertigo and I didn’t panic, just thinking it would pass in a couple of days, at worst, maybe a week. Well, after all the maneuvers and trying things that didn’t work, I started thinking maybe it wasn’t vertigo. That is when I contacted the team doctor and he put me in touch with an Ears, Nose and Throat Specialist (ENT).
Since that one Friday afternoon I have not gone ONE day without symptoms. However, some days are better than others. The best way I can describe it is always feeling like I am hungover. On the good days, it feels like maybe I only had a few beers the night before and then on the really bad days, it feels like I drank an entire bottle of Tequila. My head pounds, I am constantly dizzy and if I lay down and close my eyes, the room spins. I am nauseas, I am always tired and my mind is often very foggy. I am having a hard time remembering things and staying focused. It is scary and at times I get worried if I am the only one home with the kids. Another part of this is that it has taken a toll on me mentally, on my state of mind. I am usually a very positive, optimistic person, but I am finding it more and more difficult to maintain that positivity. I have broken down into tears quite a few times from pure exhaustion and from feeling like there is no end in sight. Everything I read says this can go on for months or even years. I have to say though, I am very lucky that for the most part my symptoms are bearable. I have read and spoke to so many people who can’t drive a car or even walk to the mailbox. I have only had a handful of days where this illness has prevented me from doing daily tasks like that.
ENT Appointment
At the Royal Victoria Hospital I saw Dr. Mijovic. She tested me for vertigo, which she did not think I had and said she thinks I am suffering from vestibular migraines. She sent a request for me to see a neurologist that specializes in these migraines, but I am still waiting to get in to see him. She also sent me for a balance test, which was done at the Royal Victoria hospital as well. I am still currently waiting to hear back about the results. She also sent me for an MRI, I never heard back on this, so I’m just hoping no news is good news.
I spent about two months just waiting... waiting to hear back from the doctor and waiting to hear back about test results. I finally got to a point where I couldn’t just sit and wait any longer, so I dug in and started doing some research on my own.
Luckily, Carey has his Chiropractor, Michael Prebeg, come in to town from Toronto every couple of weeks, so I have seen him a few times. We have done some acupuncture which seems to be helping, at least in the days following. He has also examined my jaw and has recommended seeing a TMJ specialist, so that is now on my list.
I also found a physiotherapist that specializes in these types of things. I am seeing Michele Roy at Kinatex Sport. This was my first appointment (other than with Carey’s Chiropractor) where I felt like they cared and truly wanted to help me figure this out. It sounds silly, but even after seeing doctors and specialists no one has really sat down and talked to me about vestibular migraines and what I could be doing to help. Michele thinks a lot has to do with issues I am having in my shoulders, neck and bad posture. You can see this in the photos below. The photo on the left is my natural resting posture and the photo on the right is what it should be. She gave me exercises to help correct my posture. She gave me things to help work on my balance — just easy stuff (or what should be easy) like walking forward and backwards with my eyes closed, as well as some eye tracking movements to do. She also gave me tips to help keep my symptoms at bay.
For example:
Taking time off from the computer every hour; closing and covering my eyes. Really giving everything a rest.
Wearing a hat and sunglasses in the grocery store, since it is a big trigger for me
Putting tape on my glasses (google Shannon Mcguire)
I will continue to see Michele once a week while we are in Montreal.
Other things I am doing to help my vestibular migraines:
I have noticed that my vision is something that has been a big issue during this journey. I have trouble getting my eyes to focus, things are blurry and I get motion sickness from simple actions like scrolling through Instagram. So, I did go in for a basic eye exam and it turns out my right eye is pretty weak (along with having cataracts and dry eyes). I did get glasses, which should be coming in this week or next.
I am currently reading Heal Your Headache: The 1-2-3 Program For Taking Charge Of Your Headaches. They recommend removing certain “trigger” foods from your diet which I am working on, but finding it very difficult to give up my morning coffee!
Working on the computer has been — or can be — a trigger for me, but it is pretty unavoidable. So, I purchased these glasses from Migraine Shields, which I think are already helping! The Physiotherapist suggested a cheaper way, which is to go to Staples and by colored, see-through like plastic sheets of paper and put them over your computer screen. You can try the different colors to see which one helps the most.
Medication: There are medications that can help with the symptoms and even treatments like Botox that I can explore. Right now I am breastfeeding, so I’m trying to find other ways until that stage ends. I have started to consider giving up breastfeeding though, so I can really explore some of the other options. We will see.
That is it for now. I am literally trying anything and everything to find what works best for me and my vestibular migraine journey. I so appreciate everyone who reaches out with tips or suggestions on things to try and I am so sorry that so many of you guys are going through something similar, it has not been easy! I will continue to update you if anything changes or if I find more things that help to make life a bit easier.
Much Love,
