Our next blog comes locally from Ottawa - a fierce warrior who masks a lot of her pain by helping others with pain. Melissa, can you introduce yourself to our readers?
Hi there, my name is Melissa Cunningham. I’m 35 years old and I live in Ottawa. I’m a self-employed personal trainer and mobility specialist. I work with all kinds of different clients; some extremely fit, pregnant, older with balance issues, and some are just starting out, looking to get fit, healthy and active! I absolutely love my job and am extremely passionate about it. I always say the more people I can help the better! However, beneath the surface of all my enthusiastic energy is someone who suffers in silence from chronic migraine pain and dizziness on a daily basis.
“It was as if a million cameras were going off around me. There were flashing lights everywhere. I had no idea what was going on; needless to say, I was very scared.”
Can you share how you got diagnosed with migraines?
I remember being absolutely terrified at 13 years of age in grade 8 gym class when all of a sudden, I couldn’t see properly. It was as if a million cameras were going off around me. There were flashing lights everywhere. I had no idea what was going on; needless to say, I was very scared. I sat down in the hall outside the gymnasium waiting for whatever was going on with my vision to subside. In about 20 minutes, my vision returned to normal, BUT the worst headache that I’ve ever experienced in my entire life was setting in. I thought for sure I was going to throw up. I went home from school early that day and just rested. I never threw up but was convinced I would. The nausea was just as severe as the throbbing pain in my head. I could hardly get up from my bed.
The next day, the pain in my head was significantly better unless I bent over or did something physical, so I went to school. My parents had told me I had a migraine. “Oh well I thought. I’m sure this was just a one-time thing.” So that being said, I carried on and just assumed I most likely would never get another migraine. After all, I hadn’t drank a sufficient amount of water, it was an extremely hot day and I was overexerting myself in gym class, as I always do due to my competitive, athletic nature. “I’m good, I said to myself.”
Fast forward to the following year and I unfortunately ended up with another acute migraine attack with the same frightening visual aura beforehand. From then on, I started suffering from a terribly debilitating migraine headache about once a year. Although the pain was like nothing I’ve experienced before, and the visual aura being pretty darn scary to say the least, I thought to myself “this seems to happen about once a year so I can live with that.” Little did I know, however, that in May of 2020, these migraines would become chronic and strongly affect my daily life.
The dizziness hit me first. We’ve all had acute bouts of vertigo so I just assumed it would pass but there was something different about this particular dizziness. It made me feel like I was rocking on a boat. I was very unsteady on my feet and it just wasn’t going away. After a few days of feeling this way I got a headache. I knew then (and no I’m not a doctor but I had a strong feeling) that this dizziness must be linked to my migraines somehow and that something different was happening to me. I’m not sure how I knew this, but I just had a weird feeling. Most people would probably have gone to the hospital or made a doctor’s appointment at that point, but not me. I continued working with clients as well as exercising and working out on my own time, hoping that this dizziness would eventually vanish. The head pain came and went, but did become very frequent; much more frequent than I’ve ever experienced. Let’s just say that having a headache was becoming “my new normal.”
After a few months, I finally made an appointment with my doctor. She diagnosed me with “cluster headache” and put me on a daily medication to take as a preventative. I initially presented with cluster headache symptoms - red eye including in and above my eyebrow, tearing, watery eye and constricted pupil. I asked her about the dizziness and she said it was completely normal. Ugh. The initial dose of this new medication did nothing to help alleviate the pain so after a few months, my doctor increased the dosage. I finally had a bit of relief. Not enough to be satisfied with however. I continued doing as much research as I possibly could and was realizing that I most likely had something called vestibular migraine as opposed to cluster headache. I told my doctor this and she said that I shouldn’t worry because the medication she put me on is also used to treat vestibular migraine. I needed more relief as I was still living in such terrible pain with debilitating unsteadiness. The headaches became so severe they would actually make me cry. Toppled with the dizziness, I honestly don’t know how I was getting by every day. Did I stop working with clients or exercising myself? Nope. Never. My doctor ordered an MRI just to rule out anything else that could potentially be life-threatening like a tumor or some sort of brain infection. Once again, I knew that this was not the case but nonetheless, I was still a bit nervous for the MRI. (I’d like to add that I don’t like hospitals or doctor’s offices, although I’m sure you already figured that one out!). Results were normal but showed several little white spots on my brain indicating migraine scarring. My doctor then decided to refer me to a neurologist (who, I still have yet to see as the wait list is so long).
So frustrating!! Not only has it been years battling this diagnosis but there is yet a drug that has affected you greatly. Was there anything you could do in the alternative therapy realm that helped at all??
At this point, I started seeing a chiropractor who specializes in cranial adjustments specifically for migraine patients. After about 3-4 weeks of seeing him twice a week, I did start to notice a difference in my headaches. The pain was becoming much less severe. I couldn’t believe it! I didn’t remember what it was like to not have a debilitating headache! Although the head pain was starting to subside, the dizziness was still lingering. I asked my doctor if she could prescribe me something to help treat my vestibular symptoms. She did, but of course this medication did absolutely nothing.
It wasn’t until I recently started seeing a vestibular physiotherapist that I started to see a drastic difference in my life. The trouble with vestibular migraine is that you are dealing with two separate enemies. The head pain, as well as the dizziness. I discovered that each has to be treated distinctly. I have been seeing a vestibular therapist for two months now and I cannot get over the difference in the dizziness. I’m feeling much more stable on my feet and significantly less like “I’m rocking on a boat.” I’m finally starting to see some light at the end of the tunnel. I’m not 100 percent but I’m hopeful that I’ll eventually be back to my old self.
The head pain also continues to remain on the mend, thanks to my chiropractor who I still see for maintenance (cranial adjustments) as well as my own research. I recently started myself on a very strict vitamin regime. These are vitamins and supplements that are specifically recommended for vestibular migraine. I’d also like to point out that I am no longer on my preventative medication prescribed to me by my doctor. We’ll see what the neurologist has in store for me come November when I see her!
Most people are probably reading this thinking, ‘I know what a headache feels like”. Can you describe what your pain feels like? Is it just in your head or are there other parts of your body that are affected?
The pain is like nothing else I’ve ever experienced. It’s often unilateral, around my eyes and in my temples. My neck often hurts as well. It can be exacerbated with certain movements and physical activity. I’d best describe it as a very deep, pulsating pain that makes me want to scream and cry.
Have you ever been told ‘its just a headache?’
Thankfully I’ve never been told “it’s just a headache...” that definitely would not go over well. Lol. Although, as mentioned above, I did have a friend tell me that I’d probably feel better after I ate something. Not helpful. Hence why I like to stay quiet and rarely discuss symptoms.
Does having migraines limit your ability to do certain things? Has it affected the way in which you can socialize, do your job, etc? I can only imagine the constant feeling of being imbalanced… oh and the nausea!
Yes, having migraines most definitely limits my ability to do certain activities. Especially vestibular migraine as the dizziness is so debilitating. My tolerance for a migraine or headache without the dizziness is much higher, of course. Being in chronic pain makes it terribly hard to socialize and I used to have such a difficult time saying no to my friends as I knew they would not understand the pain, anxiety and stress I was feeling from all this. I had one friend say to me “maybe have something to eat to help the pain? Text me after you eat, I’m sure you’ll feel better.” Um, nope, I won’t actually. My family often says “breathe through the pain. Try and breathe to calm yourself down. Deep breaths will relax your central nervous system.” It’s very difficult trying to explain to someone how much pain you’re in when it’s invisible so I usually keep quiet and suffer in silence. With my symptoms improving, however, I’m now starting to get my social life back.
For others who are just starting to do research on migraines, what are some of the things that have helped alleviate symptoms?
I highly recommend the book Victory Over Vestibular Migraine if you are suffering from vestibular migraine specifically. This book provided me with a great deal of information on how to successfully overcome such a brutal condition. It was in this book (written by a neurologist who specializes in vestibular migraine) that I learned about all the vitamins, minerals and supplements to take as well as the exact doses. The author also recommended alternative therapies such as cranial chiropractic adjustments and vestibular rehabilitation therapy. Both of these therapies were and currently are extremely helpful!! In fact, I’ve learned that medication can often just be a coverup or bandaid to help temporarily relieve pain but does not take care of the root of the actual problem.
Melissa this is truly eye-opening. Anything you would tell your younger self, or last words to our readers?
I would highly recommend making a doctors’ appointment right from the get go. If you are suffering from migraines, do NOT wait to disclose this to your family practitioner. My symptoms in grade 8 at only 13 years of age really should’ve been discussed with my doctor right away. No, migraines are not life threatening, however, there is definitely a reason you are getting them that should be considered! The sooner your symptoms are addressed the better.
Also, as mentioned above, do NOT count on medication being the answer. Seek alternative therapies!! They can often be much more effective and are easy to find.
I’d like to conclude my interview with a few of my own personal recommendations to help with migraine and vestibular migraine:
Stay hydrated! Always have your water bottle full (of water) and handy.
Avoid alcohol!
Don’t let yourself get too hungry! Stay on top of your blood sugar levels. Have snacks nearby. Healthy snacks I might add.
Avoid refined sugars as much as possible.
Take your vitamins and supplements!! Specifically, a B complex vitamin containing B2, B6, B9 and B12, vitamin D3, magnesium and Co Q 10 enzyme.
Know you’re not alone and you’ll get through this with the right mindset!!