Living with chronic migraines – resources

It’s Monday morning and I’ve been at the computer for several hours already. I have my coffee and it’s almost time for a lunch break. My feet are swollen again and I can’t seem to sit still for very long these days.

I was supposed to go in for my COVID vaccine this afternoon, but unfortunately, a glitch happened in the system. I had booked an appointment for today. Then cancelled it to change the time of the appointment. I guess the second appointment never went through. So, I’m booked to go in next Friday.

What have I been doing since 9:00 am you asked? That’s a good question. I’m working on gathering evidence to prove that migraines are indeed, a disability that’s impacting my ability to work a full time job. I’m also desperately trying to get some kind of support where I can work remotely from home – but this has been an impossible feat.

I did some research on the weekend and I wanted to share with you what I have learned about migraines and what information you need to take with you to your medical appointments. Diagnosing severe or chronic migraines can be challenging. And this is why it’s crucial to document your daily symptoms, headaches and migraine activity in great detail.

This is in part why I started this blog. I use it as a daily check in for my anxiety, mood, weight loss progress and of course, the migraines. All I have to do is search the blog for “migraines” and it will pull up all my dates. The other option is to use wordpress as a diary, and categorize your posts as migraines. I think I’m going to do that going forward.

Stay tuned for part 2 – I’ll be creating a separate post with how to tips on migraine journaling.


Background

This is something that I learned in 2018 when speaking to my long-time family physician about migraine care. Migraines are something I’ve struggled with since I was a teen, but they have progressed in frequency and severity in the last few years.

Like many other migraine sufferers, migraines were my number one reason for calling in sick to work. And as many employers do, mine started citing performance issues even know they knew that workplace conditions exasperated my symptoms. I’m convinced that the smudging in the workplace triggered the migraines which have now been diagnosed as severe chronic migraines. I went on medical leave in the fall of 2019 and I’m struggling to return to work of any kind.

I’ve decided to help this blog grow and to attract the right kind of audience, I’m calling upon migraine sufferers to follow this blog and reach out. I’m interested in setting up an online support group where we have a safe space to discuss new research and treatment options. If you’re interested in something like this, let me know. It will probably be a Facebook group.

I thought I would share some of my favorite resources for learning about migraines and some new information I’ve learned in my research. If you have any sites you’d like to share, please type in the name the comments.

The reason I’m being so open about this in my blog, is not only to help spread awareness around living with chronic migraines, but also in hopes of connecting with employers who may be willing to provide employment for people with these types of conditions.


What is chronic or severe migraine?

Chronic or severe migraine is when a person suffers from more than 15 days out of the month. This time frame can include what’s known as the migraine hangover. Diagnosing chronic migraines can be difficult and time consuming – this is where journaling your migraine and headache activity is crucial.

One of the dangers of chronic migraines as I have experienced, is that long term use of medications will work for a while and then stop all together. I’ve tried many treatments and prescriptions over the years. I’ll list them all later in this post – but eventually, they all stop working. The other risk is that some drugs like Toradol can cause stomach ulcers which is the last thing you need on top of migraine activity.

Likewise, taking too much medication can also make the migraines worse and prove to be ineffective while causing other health issues.

The important thing when it comes to treating and minimizing the frequency of migraine activity, is keeping a meticulous record of your migraines, treatments and medical appointments. Why is this important? Because knowing what triggers your migraines is key to learning what to avoid. It also helps in diagnosing what kind of migraines you may have.

Migraines and Disability

According to this GBD study shared on the Migraine Canada website, migraines are now considered to be as debilitating as terminal cancer. Yet even though chronic migraines are a disability, it’s often difficult to find financial support. I find it helps to gather research like this chart to share with medical practitioners who do not take migraines seriously.

Credit to migrainecanada.org

I had no idea that migraines were considered to be as debilitating as terminal cancer. I don’t feel so bad for canceling social gatherings because of the migraines. I wish I had taken my health more seriously in my younger years. But I don’t know if that would have helped.


Migraine Pathology

According to the NCBI website, a migraine is one of the most disabling neurovascular disorders that affects people around the world. Older research suggests that migraines were thought to be a vascular disorder. The throbbing sensation you feel on the side of your temple for instance was said to be caused by changes in arteries and vessels. According to newer research, it is now believed that migraines are associated with neural imbalances.

Migraines are quite common among the general population, however, chronic or severe migraines only affects about 5% of migraine sufferers. One of the most popular treatments for migraines is to prevent them from occurring in the first place. Medications like Maxalt can aid with this.

Migraine auras are warning signals that tells a person they are about to experience a migraine. This varies from person to person. Some people see colours or flashes of light. While others become dizzy, experience vertigo, or feel waves of nausea. And then there are people like me, who don’t get auras at all. It’s nearly impossible to use preventative medication when you have no warning signs that a migraine is about to attack.

One of the first medications I tried was Maxalt which is a pill that dissolves on your tongue. I tried this back in 2008-2010. Unfortunately, much like massage therapy and sacral massage, the Maxalt did nothing.

I think when it comes to treating migraines, it’s important to get to the root cause of the attacks. This is where a specialist like a hematologist or neurologist would be most helpful.

Here’s an interesting study if you want to read more in depth about the pathology of migraines.


Migraines vs. Headaches

One crucial distinction to note is that migraines will often attack one side of the brain. For me, it feels like a pulsating or vibration in the side of my head. I can feel the artery which is sort of like a lump. It often feels warm to the touch.

I’ve also experienced cluster headaches which I’d argue are worse than migraines. These headaches attacked the top of my head. I remember calling my mom on the phone one day years ago crying because the pain was so intense. Even the magical powers of a mother’s love couldn’t stop the pain. It felt like there was a dozen jackhammers on the top of my head.

Along with the throbbing pain, comes the nausea, sensitivity to light and even worse – the vertigo. Nausea can be mitigated using natural supplements like ginger root or ginger gravol. Some teas can help. But for me – once the migraine hits – it’s a day or two in bed.

If you wake up with a migraine – you might as well just roll over and go back to sleep if you can. Medications don’t help with these kinds of migraines. Even if you had eight hours of sleep the night before. Morning migraines are seriously the worst.

Something I’ve noticed in the last couple of years as my anxiety worsened, was that I suffered from severe mood swings with the migraines. I didn’t know that migraines could alter your mental health too. There are drugs that can help with this. I’ve tried Amitriptyline and Mirtazapine which are mild-antidepressants. Unfortunately, these drugs just made me feel like sleeping all day. I might try the Amitriptyline again as you can take it as needed.


Prodrome

This is something I just learned in my research this morning. Prodrome are the symptoms you might feel days or hours leading up to the migraine attack. These symptoms may include:

  • Constipation or stomach issues in general
  • Mood changes or swings
  • Weird food cravings
  • Neck stiffness, fatigue and general “soreness”
  • Increased thirst and urination (I had no idea!)
  • Increase in yawning and feeling tired

I don’t have much more information than this on prodrome. But I think I may add this to my own journal from now on.


Migraine Hangovers

In addition to the blinding migraines and all the symptoms that come with it – what follows can often be worse than the migraine itself. We call this the “migraine hangover,” otherwise known as “postdrome.”

If you’ve ever had too much booze, then you surely know what a hangover feels like. The postdrome is very similar. It can last for several days following the migraine. Your entire body may be left with an overwhelming feeling of fatigue or weakness. It leaves with you with a sort of brain fog – where the world around you feels hazy. Like you’re watching it from a distance. Other symptoms can include dehydration, body aches and mood swings. Depression is often linked to migraines.

The most important thing to do during the postdrome, is to learn the art of self-care. Sleep definitely helps. But make sure to drink plenty of water, or other fluids like herbal and caffeine free teas. I’ve added mint, ginger and chamomile teas to my pantry supply. Some people find caffeine helpful – I’m one of them. I also try and drink at least one litre of water daily to help prevent being dehydrated. It’s good for the skin too.

Here’s an interesting timeline that was created by the American Migraine Foundation when it comes to migraines and hangovers. You can click on the image to read more about it.


Migraine Triggers

This list is not complete. These are some of my own triggers that will most definitely cause migraines that I try and avoid. Some triggers can be environmental as in weather changes, hormonal changes or something as simple as not getting enough sleep.

  • Alcohol like red wines, some beers or drinking excessively
  • Auditory or sensory stimuli – bright lights, loud sounds, smells
  • Lack of sleep
  • Dehydration
  • Some foods can induce migraines

I can’t stress enough how important medical journals are with this. I’ll be creating one and selling it on my Etsy store.


Migraine Treatments

I’ve already touched on a few treatments that I’ve tried over the decades. I could list all the medications I’ve been on, but that would take up an entire page and one wants to read that. Or do you? Instead, I’ll list some alternate treatments that have been recommended by others. Some are quite costly, like butox injections and acupuncture. These aren’t always covered by insurance plans.

Before one can begin treatments, I urge you to record your migraine activity for a few months. If you can pinpoint your triggers this will be most helpful in discussing treatment options with your doctor. If you have suffered for migraines for more than one year without successful treatments, I would suggest asking your doctor for a referral to a neurologist. You may need a brain scan to rule out any major medical issues like a tumour. A full lab work up should be conducted as well. Ask your doctor to test your hormones, thyroid, iron – anything related to the brain function.


Resources


If you have any other references, please let me know the comments. Links may however be treated as spam. Please just type in the name of the website.


Related Posts

If you’re a fan of this article, I have lots more like it. I write about my struggles with migraines often and use this blog as a diary. It has helped connect me to so many great people who also struggle with migraines. Know that you are not alone and we are here to offer support!


Follow Blog Now!

Make sure to follow this blog for more articles like this one. I’m getting back into spiritual practices and learning about alternative healing methods which I will be sharing here. If you’re a fan of new age “stuff” like crystals, readings, past life regressions – I’ll be exploring these practices at least once a week and reviewing them. If you’re like me and tired of popping pills, then you know how important it can be to focus on meditation and inner healing.

Donations

Consider donating to help cover the costs of this blog. Ads have been disabled and the only products you will see are the ones I created myself. Additionally, you can check out the products I sell on this site, and on my Red Bubble store!

WJM Logo

Donations for mostly single

Help cover the costs of the business plan for this site. Or buy me a cup of coffee. I love coffee so much! I also accept Amazon gift cards.

CA$5.00

RedBubble Merch

Check out my online shop! You can order gym bags, pillows, phone cases, masks and all kinds of neat products with my artwork.

https://www.redbubble.com/i/mask/Black-and-White-Waves-by-jenwenartshop

5 Comments Add yours

  1. Hilary Tan says:

    Ugh, I need coffee. I’m struggling to stay awake today. As for swollen feet, I’ve been getting that too, especially in my left foot. I just bought some compression stockings for mild edema which I plan on using soon. I’m at my computer desk 8 hours a day so blood circulation isn’t great. These socks are 8-15 mmHg strength and Betsy Johnson.

  2. Wendy says:

    Yeah I need to order socks too. I find it starts after an hour and gets so big if I dont take breaks.

    Mine is partly hormones too. I have a minicycle that is sometimes helpful. Tensor bandages can also help.

    I hear you on the fatigue. This is the first good day in over a week here.

  3. Hilary Tan says:

    I bought mine from a nursing store in the south of Calgary. You can order them online too. There’s a lot of pretty designs! I think the koi website has a bunch of options!

    Migraines suck. I get them a lot but they are mainly triggered by stress. Now that the NCLEX exam is done, the frequency of my migraines has decreased. I still work but am currently working from home instead of at the hospital. 8+ hours behind a computer screen is a bit much though…. wish I could sleep lol

  4. Wendy says:

    Migraines do suck in deed. I never used to get them this often. Thanks for the suggestion on socks. I need to order some cleaning supplies in too. Working from home is so great! I really hope I can get part time work too down the road. I have an exercise ball that helps with swelling. I lay down for 30 mins with my feet rested on it.

  5. Hilary Tan says:

    Especially these days where I don’t feel safe or fit enough working at the hospital. Currently 36 weeks pregnant and can barely walk. Since I don’t qualify for mat leave, I figured I would continue working from home. I deal with CDC and contact tracing. The only good thing that came out of COVID-19 was employment!

Leave a Reply