Lights, Camera, Migraine - Invisible Disease Week

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.”

— Melissa Cunningham

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:

1. Stay hydrated! Always have your water bottle full (of water) and handy.

2. Avoid alcohol! 

3. Don’t let yourself get too hungry! Stay on top of your blood sugar levels. Have snacks nearby. Healthy snacks I might add.

4. Avoid refined sugars as much as possible. 

5. 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!! 

Neurological Pain Is Not Made Up Pain - Invisible Disease Week

We continue with a bang - a second Patient Advisory Board member - Andrea. Andrea, can you introduce yourself to our readers?

My name is Andrea Banks and I live in Orleans, Ottawa. I’m a 34 year old wife and mama to a three year old and five month old. I’m a reader, writer, friend, sister and daughter. I love coffee, dogs, music and laughter, and I am a chronic pain warrior. 

I started getting migraines around the age of 9. I got my period a year later at the age of 10, and they stuck around consistently, ever since then. At 14, my doctor recommended putting me on birth control to help manage my periods as they were extremely painful and debilitating. When I was in university the migraines started to get worse. I was young, in constant pain and eight hours away from home - my support system. I fainted in our dorm showers multiple times and was throwing up from nausea almost daily. My doctor put me on amitriptyline to help manage  the migraines, and this began my journey with chronic pain medication. I tried everything from muscle relaxants, Triptans, and anti-seizure medications to narcotic painkillers and anti inflammatories. Nothing worked long term. A few years later I began to experience horrible insomnia and fatigue and my body started to ache all over. I started to get a burning pain in my limbs and muscle twinges and spasms all over my body. I’d get what I, and many others have described as “brain shocks” which felt like short bursts of pain and confusion. It left me zapped of energy and unable to leave my bed most days.

After years of trying different medications, and a doctor who didn’t seem to believe me or ran out of options to try, I was finally referred to a rheumatologist who diagnosed me with fibromyalgia after a lengthy physical exam and many questions. She suggested sleeping pills (which I took for several years), a breast reduction (which I never got) and also put me on medication to help with nerve pain (it didn’t work). For years I dutifully took my medication, gained a ton of weight, and slept with the aid of sleeping pills. I was miserable.

About three years later I decided to make a change. With the help of my new family doctor I devised a plan: I would decrease my medication and increase my activity level. We would wean me off the sleep meds and use alternative therapies to help me get better and more consistent rest. Shortly after, I met my (now) husband who had been active all his life. He introduced me to fitness, and in particular Muay Thai kickboxing. I got into yoga, and learned how to work out at the gym. I had to be careful to find a balance of moving my body but also taking it slow and recovering. I ate better. I established a consistent bedtime routine and ritual.

During this time I also saw a neurologist as I could no longer afford my emergency migraine medication. It cost me about $120 for 6 pills and I was running out of them every few weeks. Thankfully, my neurologist recommended a vitamin regime which helped dramatically. I continue to follow this regimen almost 10 years later.

Introducing other alternative treatments over the last decade has helped tremendously. I see a chiropractor, massage therapist and psychotherapist regularly. While the chiropractor and massage help with my physical pain, the work I’ve done with my therapist has helped me heal, and continues to provide me a safe space to talk about my pain.

“My doctor was away on holiday and I saw her replacement who immediately mentioned fibromyalgia and asked if I’d been tested. She referred me to a rheumatologist almost right away.”

— Andrea Banks

These are two really interesting and puzzling illnesses. Those who have not yet had a diagnosis for migraines or fibromyalgia often wonder ‘is this what it feels like?’. Can you describe what your pain feels like?

My migraines are usually a throbbing that starts at my temples but eventually migrate to my eyes, and down my neck. I get terrible nausea and have sensitivity to light and sound.

My fibromyalgia pain is much different. Nowadays, most  of the time it’s manageable, and feels like a dull ache in the background of my body. I’ve learned to live with the day to day pain. However, fibro flare ups are another story. They always start the same way - burning and throbbing pain in my legs. If I don’t intervene quickly enough (through extra sleep, stretching, stress reduction) and it turns into a full blown flare, the burning ache spreads to my arms, neck, shoulders and hands. I feel depleted of all energy but unable to sleep. My muscles spasm.

Can you tell us a bit about how you were diagnosed? 

I was diagnosed with migraines from a very young age, but the diagnosis changed to chronic migraines in my late teens. A neurologist diagnosed me with chronic migraines based on their severity and frequency. I had migraines almost everyday for months.

My fibromyalgia took much longer to diagnose. When I started telling my family doctor about the pain she suggested it was related to my migraines and kept trying new medications. I tried so many I’ve lost count. I went in to see her after I ended up in the emergency room after a week-long migraine that left me unable to eat, sleep, or move much. My doctor was away on holiday and I saw her replacement who immediately mentioned fibromyalgia and asked if I’d been tested. She referred me to a rheumatologist almost right away.

Three months later I visited the rheumatologist who performed numerous physical tests and asked me a ton of questions. She diagnosed me with fibromyalgia and suggested another medication, sleeping pills to “get me back on track” and suggested buying a high quality mattress, pillows and sheets. I was in my early twenties and off work, so needless to say this was a luxury I couldn’t afford.

After years of treatment and tons of side effects from the medication I was taking, I found a new family doctor who was super supportive and very up to date on fibromyalgia treatment. We worked on weaning me off all medication (this took over a year) and switched our focus to lifestyle treatments and alternative therapies.

Did the doctors ever suggest your migraines were linked to your fibromyalgia or are they completely separate?

My childhood family doctor believed this to be the case, but every other specialist and doctor I’ve been treating them as separate issues. My migraines seem to be hormonal, while my fibromyalgia was believed to have originated from a virus. 

Truthfully now, we have heard amongst the spoonie community that fibromyalgia is often used as a catch-all diagnosis. How did you feel when you were given the diagnosis?

Oh my goodness, absolutely! I still believe, even ten years later, that fibromyalgia is an umbrella term for a set of symptoms that a doctor can’t fully understand. Basically, widespread, chronic pain and sleep problems that have no “cause”.

At the time of my diagnosis, fibromyalgia was rarely diagnosed. I knew a couple of women who were middle aged or older with the diagnosis but no one even remotely around my age. As time went on I met other young women with the diagnosis and I think many of us felt it was a label that was used when doctors couldn’t figure out the cause of our pain. However, at the time I felt relieved. I had spent years with no one being able to tell me what was wrong, and I felt like no one really believed my pain was real. So to have someone confirm I had an illness and to give it a name brought me relief at the time.

Your honesty is so refreshing. I know that there are two sides to that coin: having a diagnosis you can name, while being diagnosed with something others don’t necessarily understand. With these types of diagnoses, does it affect the way you view yourself? Or how others perceive you?

It used to dramatically affect both of those things. When I was first diagnosed I had a terrible experience at a very unsupportive workplace. I confided in the HR specialist that I was diagnosed with Fibromyalgia and she advised me never to tell anyone, as it would make me seem weak and incapable. I was in my early twenties and this woman was middle aged so I believed her, and for years did my best to hide my condition. Her words made me see myself as useless and unreliable, and I started to resent my body and it’s inability to let me live life the way I wanted.

I started an online community for young women diagnosed with fibromyalgia and it helped me realize I wasn’t alone. It made me feel more confident and I started to advocate more for myself and found different and better treatment options that worked for me. I let go of relationships that weren’t serving me and focused on those that looked to understand and help support me.

A decade later, I couldn’t feel more different. Having a supportive husband, family and close group of friends has made all the difference. Therapy, yoga and meditation also helped me realize my body is trying to send me a message to slow down and take better care of myself. I learned to listen to my body and stopped resenting it. Pregnancy and motherhood also really helped me view my body as strong and capable and helped me realize my illness and pain does not define me.

Instead of hiding my condition, I try to talk about it when I can. I want others to realize they can live a full and happy life despite chronic pain.

Generally speaking, are you open to alternative therapies such as osteopathic, pelvic floor, myofascial massage, acupuncture?

Absolutely! I’ve tried acupuncture, osteo, massage, and  chiropractic care. These fragments in combination with yoga, meditation and therapy are my tools of choice for living with chronic pain.

You are a warrior! I am so happy to hear they are working for you. What would you tell our readers in order to help them consider alternative therapies?

These therapies are 100% what help me to live a full life with my chronic pain, and have helped me connect deeper with my body’s needs. When I was first diagnosed, medication was always the focus. Numbing the pain or masking it with pain killers never addressed the root issue and came with so many additional side effects. Alternative therapies offered much more relief and addressed the pain instead of covering it up. Please know that using these techniques can change how you see yourself and experience life.

And lastly, what would you tell your younger self about pain management?

Oh goodness…so many things! I would tell her to advocate for herself sooner. Not to let others define her illness and treatment plan. I would tell her to educate herself on alternative treatments much sooner, and reach out to those who have seen success using them. I would tell her to adjust her lifestyle and that surrounding herself with love and support is more beneficial than trying to bury the pain under mountains of medication.

Anything else you want to tell our readers?

You are not alone. Chronic pain affects so many, and as women we experience additional challenges defined by social and gender norms. We shoulder such emotional burdens and labour, and we often lose touch with ourselves and what our body is trying to tell us.  We so often fight for others, but rarely for ourselves. You deserve a beautiful life. While it may not look like the one you envisioned, it can still be amazing. Take care of yourself, ask questions, and find your people. Get curious about treatment options and serious about committing to yourself. You don’t have to be silent, and you are so very, very strong.