MYgraine Story: Invisible Injuries Can Be the Hardest to Handle

MYgraine Story: Invisible Injuries Can Be the Hardest to Handle

By Lynn Julian Crisci

Editor’s note: June is Migraine Awareness Month, and we think it’s a great opportunity to increase awareness. That’s we’re collaborating with U.S. Pain Foundation, to raise public awareness in an effort to take a step towards creating better outcomes, increased access to migraine care and empower those diagnosed with migraine. We will be collecting reader submitted migraine stories between now and the end of June, and publishing them as “MYgraine Stories”, one-per-week until June, when we will publish as many as we can, along with our regular daily content. Click here for more information on submitting a story for consideration.

I was known as Cookie Cutter Girl, 21st Century Pop Superhero. I packed “Girl Power Pop” with a punch on 500+ radio stations and 30+ CDs Internationally. “Rolling Stone” called me “Nashville’s Version of Fiona Apple.”

I started the night of my accident very excited, as I was about to play a popular, 40-year-old Boston club—but I ended in an ER. In 25 years performing on stages, I’d never fallen, until I slipped on an untapped stage cord and knocked myself out. It left me disabled, in a wheelchair, due to an undiagnosed TBI in the base of my brain. I also suffer from Migraines, Fibromyalgia and Ehlers Danlos Syndrome (EDS). I slowly, painfully, learned how to do many things over again, including walking, over the next 5-6 years.

What I lost:

  • My job and all present and future income from music performance and merchandise sales.
  • My personal and social life, as having chronic conditions sorts your friends out for you.
  • My patience with my fiancé, my dog and people because chronic pain makes you cranky.

In the fall of 2009, I moved to Boston to be closer to all the major hospitals. There I saw a kind, caring neurologist, who diagnosed me with a brain injury. Finally, it all made sense: I had a mild Traumatic Brain Injury (TBI). As if that wasn’t enough, I suffered weekly migraines too.

Supplements, like CBD oil and tumeric, can reduce migraines by decreasing stress and inflammation.

Yet, from the end of 2011 through March 2013, I found a new passion to pursue, acting. Since I’d been on stages since I was five, acting was a natural transition. So I began taking classes and acting in regional short films and commercials. Migraines made it MUCH more challenging, as they do almost everything. The bright lights and tiny print on the scripts made my migraines more frequent and more painful. The 12–16 hours days were exhausting and took me days to recover. Yet, it stimulated the part of my artist’s brain that needed to be creative. I was nominated as “Best Actress” for a New England Actors Best of Award (NEABO), slowly earned a substantial acting resume, garnered good press, and built a new website, BostonActress.org.

On 4.15.2013, I became an injured “survivor” of the Boston Marathon attack. I felt more like a “victim,” and needed to do something empowering. So, I trained every day, despite migraines and body pain, for five months to run the 2014 Boston Marathon. I completed that race, in the Mobility Impaired division, along with the Boston Athletic Association’s (BAA) Half Marathon, 10K and 5K races, collectively called their “Distance Medley.” I am so honored to be named one of the “Most Inspirational Women to Ever Run The Boston Marathon” by “SELF Magazine.” SELF MAGAZINE, http://www.self.com/fitness/fitness-news/2015/04/boston-marathon-runners-female-inspiration/ and Most Resilient by MORE MAGAZINE, http://www.more.com/health/i-didnt-know-i-had-it-me?page=2.

HBOT (Hyperbaric Oxygen Therapy) reduces inflammation and heals tissue.

In 2016, my migraines reduced in severity and frequency after HBOT treatments. I also started using CBD oil to successfully prevent and interrupt my panic attacks, and reduce my stress level, inflammation and chronic pain.

Lessons I’ve Learned:

  • YOU are your own best advocate. Only you know what symptoms are “new” and “normal” for you. The foundation of your medical team is your primary doctor, so be sure to have one who will fight with and for you for your medical rights. Keep fighting for treatment of new symptoms, and don’t stop until you are fully diagnosed!
  • Your primary care physician is not a TBI specialist. See a neurologist for migraines.
  • Try to take only one new medication at a time. This allows you to see how you react to it and what side effects you have from it.
  • Your migraine brain needs more rest and less stress than a healthy one! It is critical that you limit access to fluorescent lights, computer and phone screen glare and low light reading.

 

We are ALL Pain Warriors… Strength Through Unity!

I chose to do volunteer work because it gave my life purpose again. I chose advocacy because it gave me my voice back, not to sing, but to speak for those who cannot. The lesson is to find what speaks to you, and channel what energy you have towards it. Only you can decide what gives your life “purpose” and will make you feel good about yourself again.

 

My message is one of INSPIRATION and HOPE. I fought my way out of that wheelchair, and I fought my way across that finish line.  If I can do it, so can you.  Never give up HOPE!

Strength Through Unity…

Lynn Julian Crisci wears more hats than a Hydra has heads. In film, she’s an actress in dozens of movies. In music, she’s a Pop Superhero on 30+ CDs Internationally. In tech, she’s a website SEO guru and a press release and article marketing writer. In health, she’s an “Activist, Ambassador, Speaker, Consultant.” Her daily struggle with chronic pain inspired her to volunteer as the Director of Medical Marijuana Advocacy for Leaftopia (Leaftopia.com), which includes overseeing all their social media and fighting for patients’ rights.  She is the Massachusetts Ambassador for the US Pain Foundation (USPainFoundation.org), and the Advisory Panel of the Massachusetts Resiliency Center (MAResiliencyCenter.org). Her message is one of Inspiration and Hope. 

You can follow her at:

http://Facebook.com/BostonFilm

http://Twitter.com/PopSuperhero

http://Instagram.com/BostonActress

Subscribe to our blog via email

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Authored by: Lynn Julian Crisci

There are 5 comments for this article
  1. Danny at 9:25 pm

    I can only wish that I had diagnosable, medication treatable “migraines”. With my electrical injury, TBI & permanent brain damage, I can maybe play golf 3 or 4 times a year. Training for a marathon?! I get nauseated just thinking about trying it.

    This is a great, inspirational article. Good for the writer! I hope this helps many migraine sufferers to fight the condition and be able to do great things while managing their pain. Good luck!

  2. Jean Price at 4:35 pm

    Great article! And so inspiring! When I think of headaches…of ANY kind…a scene in an Indiana Jones movie comes to mind! The one where he’s getting in an airplane and finds out there are snakes…and says, “SNAKES! Why does it have to be snakes?!” When I have a headache, that’s similar to the thought I have…WHY does it have to be a headache!?! I suppose it’s because I find headache pain almost impossible to scoot around, and to just keep going!

    With most headaches…I think it’s harder to get relief, too! It’s like all bets are off, most coping evaporates, all activity comes to a standstill…and pure survival mode MUST click in! You are forced to give in to whatever helps THE PAIN….or it will often become worse! And what will help can vary from one headache to another! So it takes a while to remember any further options which had previously helped, when the standard ones don’t cut it!! I really don’t like headaches!! They are right up there with nausea and vertigo, on my list of what I’d like to avoid most in life!!

    Both my daughter and my granddaughter, (her daughter), have migraines! I’ve seen a budding migraine grow to overwhelming in a matter of minutes, and totally incapacitate them! I know from being with them then, (and from my own history of times with severe daily headaches, from a variety of causes!) everything they WANT TO DO comes to a screeching halt! (Let alone the things they NEED TO DO!!) They may be out of commission for the whole day…regardless of what they are going to miss out on! Like when it’s Christmas Day with presnts still left to open, or a special event they had meticulously planned and waited for excitedly! Headache pain takes center stage! Yet when the pain is strong, you don’t even care what you’re missing right then! (Have I said I really don’t like headaches? Because, I so don’t!)

    There can be many levels of headache pain, too. Life seems to stop completely when the pain gets to a certain point, no matter what the cause is!! The nausea, the light sensitivity, the sound sensitivity, and the unrelenting waves of pain make you want to curl up into a ball and disappear! So, anyone who can “weather” these types of pain attacks without becoming a serial killer has both my supreme empathy and my resounding applause! Not only is there the pain to cope with, it also takes a lot of adjusting schedules and plans, since you rarely can see them coming! Migraines seem to happen at random, usually at the worst possible times…and disrupt life even MORE because of this! It takes being flexible, and rolling with the punches, which I also highly admire!

    Then it’s not really over when the headach relents either! You can be left feeling “wonky”, sometimes from the migraine medication…and feeling like you’re still fragile, and perhaps right on the edge of a repeat! Hoping and praying it doesn’t whomp back up once it starts to fade! Some headaches do this, without much warning! My own latest headache experiences are from my cervical spine issues…and they are 100% positional. Too many mornings, my first waking realization is…Uh oh! I’ve somehow moved during the night, (despite my multi-pillow barricades to prevent this)…and I now have a headache. It will take at least two hours to get the pain down to a dull roar! (Or more, if I was laying on my back for an extended period!).

    Many days, my headache does go away totally, yet some days I’m left with a residual tinge of pain…which can quickly escalate if I’m not careful! On those days, returning to bed at any point is the worst possible thing I can do!! It will always get worse then! So if my “other” pain issues happen to ALSO be flaring up, getting in the position of more comfort for THAT pain will definitely result in increasing my headache pain! Not something I’m ever willing to risk! Luckily I find I’m more able to tolerate the “other” pain, and my medication helps more with the other pain, too! Whereas with my positional morning headaches, usually only time and repositioning helps! Sometimes I will additionally need a heat pack or an anti-inflammatory gel before it will start to subside. And, YES, I really do detest headaches!

    By giving us a glimpse of how your headaches and pain have affected your life, Lynn…and how you’ve worked to rise above so many hardships resulting from your injuries, you have been really inspirational!! So your message comes across pound and clear! And it also speaks to how for EACH of us, our unique giftedness can help us find enough joy and enough purpose in life to excel…despite the pain and any disabilities we have! And OUR PAIN can actually HELP US find those gifts we each possess! I think this is what counts most for in life for EVERYONE, really…to be able to know yourself AND give of your special gifts and talents….whether you have hurdles to overcome in life to do it, or not! Thanks for the hope you inspire…it’s something we each need!!

  3. Carolyn at 12:40 pm

    A wonderful, inspiring story!

  4. Annette at 11:44 am

    IF THIS IS HELPFUL. ……I’VE GOT CLIENTS WHO ATTEND CHIROPRACTIC RELIEF FROM DR. HOLLENBERG IN MD. ..HE’S ABSOLUTELY AMAZING! . IT’S ALOT OF POSTURE AND COMPRESSION IN THE NECK. …HAVE MULTIPLE CLIENTS WHO ARE HEADACHE FREE. …IT’S BETTER THAN CONSTANTLY TAKING PILLS N NON STOP PAIN. …

  5. Bob Schubring at 8:36 am

    That was truly inspirational. I applaud Lynn’s commitment to the scientific method: Change one thing at a time. It’s slow. But it gives us confidence when we know what worked, and what didn’t.

Leave a Reply

Your email address will not be published. Required fields are marked *