Holding on to Hope

By Brittany

Our theme at The Migraine Mantras this month is “Hope, Health and Holidays” and it rings true for where I’m at on my journey of chronic migraines.

It’s approaching the three year anniversary of my TBI that started my chronic migraines. I’ve gone through many waves of hope and let down over the last three years as I work on my recovery and healing.

In the first two and a half years, I tried almost everything under the sun from acupuncture, therapeutic massage, NUCCA chiropractor, regular chiropractor, physiotherapy, psychologists, yoga, mindfulness, countless medications (all with side effects), changes in birth control medications, naturopaths, Botox injections every 12 weeks for over a year and various other programs within a Chronic Pain clinic.

All of these things, all of the medical professionals I worked with, inspired me with hope in recovery. Sometimes I would get some relief, but it was always short lived. My body quickly and easily develops a tolerance to any treatment, and as you can probably imagine, that can wear down my hope.

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I recently read in a BBC article that “Chronic migraine is in the top seven conditions for lifetime disability and yet nothing much is done about it…”

In another article by Global News, they state “The World Health Organization recognizes migraines as one of the most disabling conditions and a top three cause of days of life lost due to disability.” 

Now, those are some pretty bleak statements, and you might have lost hope based on what I’ve shared in this post thus far, but I assure you, there is hope!! Both of these articles are recently reporting on a new migraine drug that could cut monthly migraine days in half! 

About 6 weeks ago, I was at my specialist’s office, Dr. F., for my weekly occipital nerve block injections and he had a drug rep shadowing him that day. A new migraine drug was soon to be released. When I asked him about it the next week, he said this drug likely wouldn’t be out until the third quarter of 2018, but he was really excited and hopeful about it.  

The third quarter of 2018 is still almost a year away though, and lots of things are still unknown, such as cost, whether or not it will be approved by insurance companies, and the possible long term effects — but let me tell you, I’m hopeful!!

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I have had 5 days in the last eleven months without a migraine. Those 5 days are as a result of 7 occipital nerve block injections over the course of almost three months. Dr. F. injects a local anesthetic (like what they use to freeze your mouth at the dentist) and a steroid medication into the back of my skull, top of my neck around my hairline, tops of my shoulders into the trapezius muscles, temples, and forehead, just above the start of my eyebrows.  

I walk out feeling like the top of my head is floating and I can’t feel the coldness of an icepack on the back of my scalp when I get home. That numb feeling lasts for a couple hours, then it wears off. Post-injections, my scalp became too tender to even wash my hair in the shower, so baths became my best option. Sleeping is also a challenge with an extremely tender scalp.  

You might wonder why it’s worth it to go through such torture. Most people cringe at the sound of “injections in my skull.” Believe me, I cringe, squirm, and swear every time too. The American Migraine Foundation explains how these injections work in what I like to call “normal human terms” that really helped me understand the procedure better:

Residing in those areas of the skull base are the occipital nerves. Irritation/inflammation of those nerves may cause a specific type of “neuralgiform” pain: occipital neuralgia. More commonly, however, those nerves serve as major “on-ramps” to the “superhighway” upon which travel the pain signals that produce migraine and other types of headache. If one can block traffic on these busy on-ramps, then it may be possible to halt the flow of pain signal on the superhighway and thus—at least temporarily—halt head pain.

As uncomfortable as this procedure is for me (sensitivity and “discomfort” varies depending on my pain level at the time of injections), I can’t even express how amazing it feels to have had 5 days without migraine in three months of getting these injections.  

That brings us back to the theme of Hope. I held onto hope, and I’m seeing results!  

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I have been blessed with an incredible medical team throughout the last three years. I have nothing but rave reviews for 90% of the professionals I’ve seen. I feel heard, accepted, supported and excited for most appointments. I feel like most have become good friends of mine, and they truly care about me and my recovery. I know a lot of people can’t say the same about the countless medical professionals they’ve been through, but I want you to know, there is hope! There are exceptional people out there who want to help you!

My hope drives me to get out of bed, continue meeting with new professionals, trying non-conventional practices, and growing a support system. We live in an incredible time with new research constantly being conducted and people having success in ways it never seemed possible before.  It takes a team, and a lot of trial and error, but I believe it will all pay off one day.

If your hope is wavering, if you’re feeling like you’ve exhausted all options, you’re not alone. However, it’s important to keep moving forward. Try the next thing, see the next professional, don’t give up on hope. Remember, what works for one person might not work for the next, and vice versa.

Dig deep, hold onto your hope, and know I’m standing on the sidelines cheering you on!

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Sources:
http://www.bbc.com/news/health-42154668
https://globalnews.ca/news/3889396/newly-tested-drugs-could-cut-monthly-migraines-by-half-study/?utm_source=GlobalNews&utm_medium=Facebook
https://americanmigrainefoundation.org/understanding-migraine/occipital-nerve-blocks/

 

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One thought on “Holding on to Hope

  1. Deborah says:

    I have been a migraineur for over 45 years and they are chronic daily migraines now. Migraines have been a huge trigger to the depression I have struggled with during my life, and coping has been frustrating and feels neverending. Last year, surprisingly, I started graphic designing products which led to selling via online marketplaces (Amazon, Redbubble etc.). The black hole days seem to lessen as an art design idea pops into my head working as a distraction. Amazing, and true coping mechanism!

    Like

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