Hit by a MAC Truck

Have you ever been hit a MAC truck? I was five the first time it happened to me. I was on my way to my best friend’s birthday party when I saw the blinding light followed by the worst pain of my life. I screamed for my mom and she did her best to console me but I cried for hours. The slightest noise reminded me of the truck’s blaring horn. My whole body, even my hair hurt. And then I vomited and the recovery process began. I hadn’t been in an actual car accident, no head on collision with an 18-wheeler. I had just experienced my first migraine. At age 32, I still refer to the experience of a migraine as getting hit by a tractor trailer. I even get a chill up my spine when I have to pass one on the highway.

At this point, I’ve been hit thousands of times. Growing up it would happen as often as once a month or sometimes I’d have a 6-month reprieve in between. But always the same pattern. An aura of flashing zig zag lights impedes my vision for 20 minutes. Once it dissipates the real pain begins. It took me years to master how to refrain from screaming and crying during an attack. After 4-6 hours, I’ll vomit out the demon and the wounds of the collision will begin to heal. It then takes two or three days to return to “normal.”

I’ve worked with a neurologist my entire life and have always tried the latest and greatest thing- Imitrex shots, DHE, Magnesium, Beta-Blockers, Depakote, Feverfew and Butterbur, Amitriptyline and even Botox treatments. I’ve kept food and pain diaries, changed my diet and reduced stress. But somehow no matter how many seatbelts I use, I can’t escape the inevitable car crash that is always around the corner. Then two and half years ago, I was hit like never before and I have never been the same since. I couldn’t get over one migraine before another aura would hit me and the process started all over again. I missed 2 straight months of work. The migraines were now chronic.

My hours at work reduced to 4-6 a day when I could manage it and maintaining a social life became a challenge. I went to dozens of specialists to find a cause with no concrete answers. After a while, I realized I needed to focus my energy on managing the pain and making the best out of the hours I felt well. All the medications I was now taking suppressed the auras, but my brain was constantly getting run over by a fleet of MAC Trucks on a regular basis. With that going on in my head, it was a constant battle to keep up appearances. I was exhausted from working late at night and on weekends to not get behind, but I was failing. For every social invite I declined, I felt I needed to go to another event so people didn’t think I had fallen off the face of the earth. But too often I would sit in the corner, miserable, because it was too loud or I didn’t have the energy to keep up a normal conversation.

I was getting nowhere. So with the support of my doctor, my boss, my boyfriend and my family I made the bold move to go on Short Term Disability in March of 2013. If I was going to get better, I couldn’t have any distractions. During this time off, I’ve eaten healthier, gotten a trainer at the gym to build up my strength, done dry needling with a physical therapist, taken a pain management class, used meditation and worked on setting a more consistent sleep schedule. These were all things I knew were in my power to control. While I’m proud of my accomplishments and will continue my efforts, these lifestyle changes haven’t made a significant impact on the daily headaches or the number of times I need to visit the ER to break a cycle. I also had a set-back when one of my medications caused significant hair loss and weaning off it has increased the severity and frequency of the migraines. Frustrated that time off work wasn’t the quick fix I had hoped, I was nearing my wits end.

Short Term Disability has now turned into Long Term, but it is my goal to get back to work in some capacity. With this in mind, my doctor is sending me next week to the Jefferson Headache Clinic in Philadelphia. Besides looking into an Occipital Nerve Stimulator, this Clinic is a last resort. I’ll go for a one day evaluation and then they will schedule me to come back for at least a week-long hospital stay when a bed is available. I’ll be receiving lidocaine and/or ketamine treatments to try to “reset” my brain. These are some heavy meds that will cause hallucinations but the hope is that I’ll leave with 50% fewer migraines (life changing!). Depending on how I respond, this could be a one-time only visit or it could be as often as once a year if it helps me to maintain some level of comfort.

I’m nervous and hopeful about this prospect, but also cautiously optimistic. I just know that I’m not ok with getting hit by a MAC Truck every day for the rest of my life.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (9)
  • Star71
    5 years ago

    Katie,
    I’ve just read a few of your posts and WOW!!!
    It’s like reading my life… No one understands a chronic migraine sufferer, no one! I suffer daily and without insurance, I am able to at least get my Topamax (400mg daily) free.
    It helps to some degree, but doesn’t completely take them away.
    I can only handle working 4 hours a day and it feels like I’ve worked a HARD 12 hours and that’s not even the end of my day. I have to come home to my 2 boys, my boyfriend and dog. So my role as mommy kicks in and as you know mommies don’t get sick time, so even though most days I walk around with a slamming 8 migraine I don’t get the luxury of laying down and sleeping it off.
    I’m working with my doctor and hoping beyond hope we can figure out how to get some type of disability or something for me, because struggling like this everyday is miserable and my boys don’t deserve this kind of mom.
    Any suggestions on what to do?
    Things to keep track of?
    Hope your treatments are working, I’ve been a sufferer since 11, so I understand.

  • Katie M. Golden moderator author
    5 years ago

    Star71,
    Thank you for reading! Yes there are definitely some things you should look into that will help your chances of getting some benefits for your disability. It really sounds like you are at the point I was before I left work. So before you do take the time to get this under control, you should be really smart about the financial choices you make. You can apply for Social Security benefits (which would include access to Medicare if you are approved). But there are also some private disability policies that you can purchase now (at under $30 a month) that would help while a Social Security claim is pending. Take a look at this article I wrote about what I’ve gone through and feel free to ask me any questions!

    http://migraine.com/blog/disability-income-preparation-guide/

    -Katie

  • Newdancerco
    5 years ago

    I gather it helped somewhat, at least. I’m walking the same edge Janet describes, though I continue to work as well- nothing helps, and I’m ready to give up. Pretty much every day is a fight- to get out of bed, to do my job, to handle everything else that has to get done. I haven’t been grocery shopping in over 6 weeks, for example. I have to go and get my son from school, and will have to pick up food on the way because there is nothing but water and Crispix.
    I can’t give up while he needs me, but if there is no end to the pain and darkness, why keep suffering?

  • Katie M. Golden moderator author
    5 years ago

    I understand the daily struggle. I don’t have kids and I can’t imagine how you are able to take care of yourself and your son- it must be exhausting. If you don’t have family or friends around that can help you with running errands, maybe there are some resources in your community you can lean on. I have a hard time asking for help, but it can be a great relief when I can just focus on what I need. This disease makes us all stronger than anyone else realizes. You are an amazing person for dealing with your pain AND raising a child.

  • MissMary
    5 years ago

    Katie-I love your posts and tried looking for your blog to no avail. Do you have a blog outside of Migraine.com?

    Your posts & treatments are very similar to mine. I was also referred to the Jefferson HC for IV lidocaine but my cardiologist said, “No”, too big of a risk with high BP & arrhythmia. I’m at over 30 drugs tried & failed, plus botox=failed, plus cervical block=failed. The only things that worked for me where Cymbalta & trigger point injections but I was very allergic to both.

    I’ve been on disability for 3.5 years and chronic migraines for 7 yrs. now. Anything that raises my BP while having a migraine increases the severity–it makes exercise, sex out of the question. I live in the dark, essentially. Light, along with cold temps are the worst (winter kills me). Confusion issues impact cooking, driving (nothing like getting lost going somewhere you’ve gone for 10 years). I’m 48 and my 98 year old Grandma has more of a life than I do.

    My husband is amazingly supportive and I struggled with asking him to do more because he already does nearly everything. I’m fortunate that my kids are raised and hoping I can find a cure before I have grandchildren so that I can be the fun grandma that I want to be.

    So again–love your posts & hope you have a personal blog.
    Thanks–Mary

  • Katie M. Golden moderator author
    5 years ago

    Miss Mary,
    Thanks for your support. I don’t have a personal blog yet. I just started writing for Migraine.com, hoping that I can connect with others through my experiences. Sounds like you’ve tried just as much as I have. As I’m getting more ingrained into the community and meeting people, I will look to expand my writing. I’ll let you know!

  • Katie M. Golden moderator author
    5 years ago

    Janet,
    Thanks for your reply. I’m lucky to have gotten disability through my employer, have you tried getting Social Security benefits?

    I understand not wanting to be let down by another “promise” to cure your headaches. My stay at the Jefferson Clinic was very helpful, but I am by no means cured. It has helped the other rescue and abortive drugs to work better than before. I feel like my system was cleansed, but I still get headaches every day. So overall it was a positive experience.

  • Janet
    5 years ago

    I live your life except I was denied disability. I have been a guinea pig far too often and really don’t think I can handle another in patient hospital stay with drug treatment that will make things far worse before better. My last in patient in march 2012 with DHE was a COMPLETE disaster….I live by faith alone now and only frova as a rescue.

    I pray for you.

    Chronic for 13 years…migraines since I was 10 years old. I am 57 and worn out and just live day to day..which as you know isn’t life.

    Blessings
    Janet

  • Leo
    5 years ago

    Katie
    I Just read you’re story. I hope you will succeed. I AM glad social security in The Netherlands is better, i suppose. I AM 60 and got my first attack at 11. I never had aura. Since 5 years it is chronic and i stopped working 4 years ago.
    Leo

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