Every day, an estimated 10% of the world’s population has to deal with the pain and frustration of living with a neurological disease called Migraine. The extent to which this condition affects their day-to-day life really just depends on what type of Migraine they have, how often, and how severe they are.
Women are 5 times more likely to suffer from a variation called Vestibular Migraines than men. Since June is Migraine Awareness Month, I wanted to share my story about living with Vestibular Migraine and how it affects my day-to-day life as an artist. I hope that in sharing my story I can help others feel less alone and bring some understanding and awareness to this condition.
I want to express that this post is not meant to be medical advice and that you should always work with a medical professional when trying to diagnose or treat any condition affecting your health.
How it Started
I remember getting my first aura when I was 14 years old working as a cashier at a grocery store. I was ringing a customer through and all of a sudden I felt like I had blind spots in my vision. I couldn’t read the screen with the grocery totals very well and my vision started to get a bit spotty. I thought maybe I just needed to sit down or eat something so I asked to go on a break and took a Tylenol for the slight headache I was also having.
Back then Google wasn’t a thing and cell phones weren’t in everyone’s pockets, so I had to go to the doctor the old-fashioned way to find out what was wrong with me. My doctor confirmed that what I had experienced was a migraine. Since everyone else in my immediate family also had migraine this wasn’t a total shock. Migraine is known to have a hereditary component. Having two parents with migraine basically meant I had little to no chance of escaping the same affliction.
For the most part through my teens and my 20’s I didn’t get them super often and when I learned how to identify them right away I would take over-the-counter pain medication, still get the aura, but usually would be mostly fine. I was luckier then. As troubling as losing my vision for about 20-30 minutes was, at least I knew what it was happening to me. At that point in my life, my only obvious trigger was coffee, which I didn’t like very much anyway. I always carried pain meds just in case, but for the most part, my migraines were manageable.
Fast forward to my late 20s and through my 30s and the migraines had decided to evolve. I didn’t know it at the time, but the frequent occurrences of dizziness, lightheadedness, and vertigo I was experiencing would eventually be diagnosed as Vestibular Migraines. I say eventually because it literally took me seeing every type of doctor you could imagine (sometimes twice) and getting a variety of blood work, CTC, and MRI scans. (All of which came back normal by the way.) It has been a long and frustrating process, especially because for a long time Vestibular Migraine wasn’t even acknowledged as a real condition by many people in the medical community.
My diagnosis initially came from a vestibular therapist who kindly tried to pass on her findings to my doctor. Unfortunately, my doctor didn’t seem convinced. It wasn’t just her though. I had other specialists also basically make me feel like I was wasting their time, and even had one suggestion that I just needed a psychologist. This is a typical story for people with Vestibular Migraines as they often have to see many doctors and have a laundry list of tests done before they get an accurate diagnosis.
What is Vestibular Migraine
It’s important to note that dizziness and vertigo are symptoms of many types of medical conditions. It was critical to go down the list and rule out things like, brain tumors, anemia, allergies, dehydration, and so on to make sure nothing was missed. The problem with coming back with “normal” all the time from a results perspective is that it never answers the question of what is actually wrong with you.
Vestibular migraines oftentimes will be diagnosed after everything else has been ruled out. I’m thankful to live in a country where this didn’t cost me a fortune from a financial perspective, but many are not so lucky. The back and forth to doctors becomes cost prohibitive and they may even have to leave their jobs because of it. Often there is no disability compensation since the condition does not qualify by many insurance companies.
Here are some of the key vestibular migraine symptoms:
- Vertigo-like symptoms, dizziness, loss of balance
- Throbbing side on one side of the head
- Sensitivity to light and smells
- Sensitivity to motion
- Visual aura commonly associated with migraine with aura
- Ringing or pressure in your ears
- Tingling or numbness in your face or parts of your body
In short, the symptoms of vestibular migraine can appear to be anything like Ménière disease and even potentially a stroke. This is why it’s important to see a doctor and not self-diagnose because in some cases you’re talking about a potentially fatal condition if not treated correctly.
How it’s Going
One of the things I would consider a huge side effect of having this condition is anxiety. If you haven’t been officially diagnosed or don’t know what your triggers are, it’s easy to live constantly in fear of another episode. For me, I rarely know when I’m going to get an attack. My brain is incredibly sensitive to things like not getting enough sleep, stress, caffeine, and sudden or severe weather changes.
Related: Using Art to Get Through Anxiety
As I write this now, this is the first day in the last 25 days that I haven’t had an uncomfortable amount of lightheadedness and dizziness. I’m not sure what prompted this last ongoing attack, but it’s required me to reevaluate how I’m treating my migraines and adjusting my work-life balance in the process.
The only thing I have been thankfully able to comfortably do in this last month has been create art. Computer screens have been painful for extended periods of time, I’ve had a lot of brain fog, a lack of being able to focus, nausea, and of course anxiety.
After an aura, I often have trouble with cognitive tasks like reading, writing, and sometimes even speaking. At times I can’t find the right words or need to say a word over again because I will pronounce it wrong the first time.
Related: Finding Work-life Balance
These episodes have had a lot of consequences for me. I’ve not been as consistent as I would like with things in my art business, making silly mistakes in spelling that bother me more than they should, and turning down social events with friends.
At times it feels like my independence, social life and ability to work on things I’m passionate about are being taken away all at once. During an attack, it takes me hours to do some tasks on my computer that normally would take minutes because of needing to take breaks.
The Outlook
Part of bringing awareness to a cause like this is telling my story like it is. Until now I have been relatively private about this and have tried my best to not ever use it as an excuse for anything. I’m not looking for sympathy, but hoping to shed some light on a condition that is often misunderstood, misdiagnosed, and is very underfunded from a research perspective. Despite the prevalence of Migraines, there is still not a lot that is not known about them.
There is no cure for this condition, though many have found ways to manage it with diet, supplements, and the aid of prescription medications. There are many great websites and organizations out there that are trying to bring awareness and share advice and best practices for those living with this. Migraine Canada is one of them. They have a great selection of free downloadable resources available and support for people looking to understand more about it.
My story is not even the most severe case, but it affects my life on almost a daily basis. For many people, the stigma surrounding this condition affects the care they are able to receive and as a result, has a host of mental health consequences.
There’s a quote by Brad Meltzer that says “Everyone is fighting a battle you know nothing about. Be Kind always.” I like to think about this quote when I see someone who’s maybe not at their best. Not everyone wants to share what they are going through and it’s their right not to.
I’m grateful migraines have not taken away my ability to create art, but it has not been kind either. It does not discriminate and chances are someone you know has had their life changed because of this too.
How You Can Help
Migraine is an extremely frustrating, debilitating, and often excruciatingly painful condition for those living with it. Often times a little compassion, patience, and willingness to help can go a long way. Offer to run an errand for your neighbor who is housebound during an attack. Be mindful of planning events that your migrainous friend can be included in that won’t be a trigger. You could even go one step further and donate to charities that help fund research and resources for people living with this condition.
For more information, resources, or to donate to a migraine charity visit one of the links below:
MigraineCanada.org
American Migraine Foundation
4 Responses
Hi Barb,
I always enjoy listening to you on the CP podcast. When I heard you say you wrote a book, I came to your website to check it out which led me to your blog. I did all this while I was recovering from…you guessed it…a migraine. (Except I was reading your blog post on a very dim phone screen, because I couldn’t tolerate the regular computer!) I am so very sorry you are dealing with them as well, but reading your story makes me feel like I’m not alone and that helps so much. I actually have CVS, which is kind of like a migraine in your stomach. And then that triggers a more classical migraine. So it’s like having a double whamie. They usually put me out for 5-7 days and I’ve had the condition most of my life.
I just thought I’d share that the Stanton Migraine Protocol may be helpful. It is based on the fact that people with migraines burn through electrolytes, and it is important to keep a good balance of salt and potassium in your diet. They have a very active Facebook group, and she wrote a book if you’re interested. I don’t follow it to the letter and am not in the FB group, but increasing the potassium, magnesium and salt in my diet has helped significantly for me.
Sorry for the long-winded comment, but I thought your post was very well written and helpful. Your new collection is beautiful as well, as is your website! Take care!
Hi Michelle! Thank you so much for advice and for taking the time to write such a detailed and thoughtful comment. I’m sorry to hear you experience migraines as well. It’s really quite debilitating for a lot of people and I wanted to shed some light on my experience with it. I was hoping that someone else reading it wouldn’t feel as alone so it warms my heart to hear it resonated with you. I’m doing much better now through some diet changes and alternative treatments. May was a bit a bit of a nightmare for me and I just thought if I could find a way to turn it into something positive then maybe it wouldn’t feel so bad. I’m on some supplements including the ones you mentioned now that seem to be helping so far but I think they don’t real effect until you’ve taken them for a while so I’m crossing my fingers! Thank you again for the lovely comments. They definitely brightened my day!
I’m really sorry that you’re going through this. I don’t suffer from migraines but I have severe ME/CFS and I learned the hard way that as soon as someone says the condition affects primarily women the following will be true:
– poorly researcher and inadequately funded
– lack of effective treatments
– painful, humiliating, and too long diagnostic process
– patient not believed to be a reliable narrator of their own experience
– referrals to psychologists and psychiatrists despite lack of symptoms of mental health issues
– lack of empathy and understanding from friends and family
The sad thing is we mostly don’t have contact with each other and either believe we’re personally doing something wrong or that we’re unlucky with our disease, when there is systemic sexism in medicine that is present worldwide.
Women should really unite and tackle this issue together. Feminists are tackling pay-gap when in reality a lot larger income inequality exists from so many women being unnecessarily sick and disabled, and not being able to work as much as healthy people or at all.
Hi Jane, thank you for the response and for sharing your thoughts on this. It is definitely very tough.
I had an older colleague, who has now passed on tell me about how when she would go to the doctor, they would talk to her husband like she needed to be committed. She also suffered with migraines and the way she was treated was appalling.
She gave me some great advice for dealing with the condition, but I’m sad to say some days it seems like very little has changed in terms of how the patient is treated.
Something definitely needs to change and it starts with not accepting the dismissive treatment we are receiving.