Time to Shine a Light

She’s your coworker or your somewhat allusive friend.  He’s your teacher or  boyfriend/husband.  S/He has a secret: chronic migraine disorder.  

Sure – she may come into work with a smile on her face, but she’s hiding the fact that the stress and fluorescent lighting causes her extreme pain.  He may continue to lead class, but the noise or scents of the classroom trigger his chronic pain.  They take pills, injections, nasal sprays, or whatever the new trend is for migraine pain relief.  They see their doctor regularly for Botox injections, have their neurologist on speed-dial, or a regular acupuncture or massage therapy appointments in order to supplement the prescriptions.  

S/He is fighting the stigma of “it’s just a headache” on a daily basis, while trying to convince her/himself that it is just that in order to go on with life.  S/He is suffering through the piercing light and pulsating sounds of daily life in order to have a life.  Then when the day is over and the charade is done, s/he curls up in bed and wonder, “How long do I have to pretend that I am okay?”  

For those with chronic migraine, the struggle and pain are real.  We fight an invisible illness that only 4% of the population understands.  We try to grin and bear it even though every ounce of our being wants to curl up in a dark room and rest until the pain is gone.  We don’t want to admit that it impacts every aspect of our lives because then it feels like there is no escape from the pain. In reality, we lose jobs, lose our friends, lose lovers all because of chronic migraine disorder. 

So what do we do?  How can we fight this illness that has no known cause or cure?  I believe it’s time to shine a light on the invisible illness.  After all, we make donations to cancer research, animal shelters, children’s hospitals, etc. trying to make a difference.  Let’s make a difference in our own lives for once.

Talk about your illness and symptoms.  Donate to migraine research.  Support others who share the struggle.  Instead of hiding our illness, let the hospitals and pharmaceutical companies see the face of chronic migraine disorder.  Maybe then we can get back to just being our every day selves and not hiding our symptoms from the world.

It’s time to shine a light on chronic migraine disorder.  We had the ice bucket challenge, perhaps this will too go viral.  I urge all readers to share a video of themselves either turning on or shining a light at the camera and share your struggle.  Tag your friends and encourage them to do the same.  Have fun with it or get serious – but when doing it, promote the donation to the Migraine Research Foundation: https://migraineresearchfoundation.org/our-research/research-we-support/

It’s time to shine a light on migraines.
PS : No I do not work for or have any affiliation with the Migraine Research Foundation.  

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Missed Class

Woke up for my weekend MBA classes with a debilitating migraine.  For the first time, I missed class due to my brain.  What is happening?! 

I feel like I’m losing control of my quality of life. I’m looking into acupuncture and massage therapy as well as speaking with my doctor.  I need a solution.

How did my life slip out of my grasp? Why can’t I control this?  I need answers… I need help.

New Symptom

Have you ever cut a jalapeño and mindlessly wiped your eyes due to an itch or something?  That burn… that jalapeño oil in your eyes burn… I experienced that as a migraine symptom yesterday.  A burning, tingling sensation in my eyes and face.

My migraine symptoms have been pretty typical – auras, loss of cognitive functions, and rosey cheeks.  On rare occasion I lose vision or get numbness. But burning is definitely new… and I haven’t heard of anyone else having it.  It left me baffled and slightly sacred, if I’m being honest.

With everything that has happened with my migraines, I should learn to expectations the unexpected.  I know they’re unpredictable, but I wish I could just figure a few things out.  I’m still hopeful that things will improve and someday this will just a bad dream,  but right now I need to wake up and fight these things with all I have… which now includes ice packs for my eyes.

What happened?

For a while, I was doing well.  I still had migraines, but they were predictable and treatable.  Now I find myself loosing cognitive function at work.  My neck locks up and develops a visible bump from knots.  Using my injections lessens the intensity, but the pain remains.  What happened?

Speaking with my neurologist, he increased my medication to combat the increased frequency.  We spoke about things that could increase the frequency for me: menstruation and weather patterns. When asked, “Is there anything I can do to prevent or lessen menstrual migraines,” he explained the benefits of estrogen.  Since my migraine was originally diagnosed as a T.I.A., no gynecologist will prescribe birth control or estrogen to help with my migraines.  I felt hopeless.

He then mentioned that women who suffer from chronic migraines improve during and after pregnancy.  80% improve!  Only 10% worsen.  Hearing this, I’ve started thinking about pregnancy and a family more seriously.

I don’t want migraines to be the reason I bring a child into the world, but it sure would be wonderful.  I want relief or control again, but how?  A baby?  That doesn’t seem fair – to anyone.  It’s selfish, really.  What if a child doesn’t help my migraines?  Would there be resentment?  A crying baby wouldn’t help my head,  that I know. 

What happened to my life?  My brain?  My control?   I’d do anything to get back to “normal” – ANYTHING!   I just want the pain to go away.  I want to know what happened…

I’m Still Here…

Part of me wanted to pretend the migraines never existed.  I could stop writing and perhaps it would make the world of migraines less ‘real’… but it was very real.  Every single day I woke up wondering, “How will I feel today?”  I wasn’t writing about it, but the pain remained.

One of my reasons for not writing was a previous employer learned of my blog.  It became a topic of conversation at one point, and if I was “irritable” or “mentally slow” that day, I was asked, “Migraine today?”  Usually the answer was yes, but I didn’t want them to know.  It’s not something I wanted to broadcast.  It started to feel like a big scarlet ‘M’ was sewn to my clothing and people began to look at me differently.

I was hospitalized for 4 days due to migraines, yet I didn’t write.  I wanted to share my story about the injections I received in my skull, but I didn’t.  I was afraid of it being shared with the wrong people or being seen as… different.  The migraine community has been so welcoming and supportive, but the real world of judgement and doubt still exist.

I’m no longer employed (laid off in February) and as I search for a new job, I pray that my migraine brain allows me to attend interviews or be the sharp and intelligent individual that I know I am.  I pray that, when hired, migraines won’t affect my work. I was foolish to think I could pretend they didn’t exist.  I was also foolish to step away from my support, my blog.

Inonor of Migraine & Headache Awareness Month, I resume my blog and reach out to others impacted by this life altering disorder.  We are the only ones who truly understand.  Yes, I still have migraines.  More importantly, I’m still me… and I’m still here.

The Definition of Me

I write this blog not only to share how migraines impact my life but also to show strength of character and inform others that they too can overcome.  Chronic is a scary word, meaning “always present or encountered; especially :  constantly vexing, weakening, or troubling.”  Seeing that word or experiencing that pain is troubling.  It’s saying that there’s no easy fix; it’s not going away any time soon.  Yes, I have Chronic Migraine Disorder, but that is not what defines me.

I’m a passionate, hardworking individual who is creative and enthusiastic about everything I do.  I love writing – one of the reasons why I started this blog.  Managing this pain has not always been easy.  However I won’t let it stop me or control my life.  I work when I have migraines because I have the resolve to overcome this.  At times I get discouraged – especially when I see how others view me or this disorder.  I am still the strong-willed individual I was before all of this began, only now I have to be stronger.  I don’t want people to know WHEN I have a migraine.  I don’t want the world knowing every ache or aura I see.  I want the world to know me: the person.

Chronic Migraine is a misunderstood disorder.  It may appear that those who suffer from it are weak because they are in pain, or if it’s not managed properly, daily functions seem impossible.  To all who suffer, I say this:  Don’t lose who you are.  You are still the wonderful person you were before these headaches took over.  Exhaust every outlet and never give up hope that you WILL control them.  It can happen and it WILL happen.

As for those who know someone with CMD – love them, be there for them, and comfort them.  Help them with the search for relief and it will come even faster.  You are a crucial part in helping the person you love to return to normal.  I am lucky enough to speak from first hand experience.  If it wasn’t for Rich, I wouldn’t be managing my pain or living my life.  He is a blessing.

Stay strong, friends and remember – only you can define who you are and how CMD impacts your life.  Be well.

Less Hope or Hopeless

I’ve been exceptionally frustrated with my migraines lately.  Just one thing start looking up they take a turn and my body doesn’t react to the medicine the way it used to.  Everyday is a game of Russian roulette: well I have a migraine all well I actually be able to enjoy my day.  Right now im at this point where I would do anything find a way to control the frequency of my migraine.

I thought my hormones might be influencing the amount of migraines I’ve experienced over the past month, so I scheduled an appointment with an endocrinologist in search of answers.  According to my blood work everything is normal- my thyroid levels my blood sugar my cholesterol my estrogen and testosterone counts. She assured me that on paper, everything is fine.  That’s another doctor who can’t find anything wrong that would stimulate a migraine. 

After doing a lot of research online and reading this blog, I realize that I’m not the only one out there suffering from this problem.  There are so many people suffering from chronic migraine disorder and still no concrete answers or understanding of why this happens and who it happens to.  With every migraine my optimism struggles.  I want to remain hopeful that one day this pain we suffer from can be cured or at least controlled.  After all the person with a migraine is not the only one who suffers.  Our families, our friends, and loved ones have to not only watch us endure this pain, but I aid us in our everyday lives.  Although there are times where I, and I’m sure others, feel like we can’t take anymore we must remain strong and hopeful.

In a search for more answers, I have scheduled an appointment with a naturopath. I’m hoping to find out if I have any food sensitivities that could be triggering migraine attacks.  After all in the battle of chronic migraine disorder, knowledge is the most powerful weapon.  I will remain optimistic relay any findings that could help others in their search for control.

Never give up hope that one day this pain will be controlled.  We may have less hope as the days go on, but we’re never hopeless.

Complete Exhaustion & Endless Questions

I’ve been trying hard to remain positive and optimistic on this whole “migraine life” thing. I’m working with a therapist to try and manage my stress better and constantly in communication with my Neurologist. Lately, I’ve been feeling completely… not myself. I’m exhausted all the time. I feel like I’m experiencing hot flashes… and I’m only 31 years old. I feel changes in my body that I cannot explain. It’s like my chemistry is off. Also, I’ve gained A LOT of weight. Since I was diagnosed, I’ve gained 50+ lbs. Since I started this new medication, I’ve put on 15 lbs. I’m still experiencing at least 8 migraine days per month, even on the new medicine.

I spoke with my Neurologist and he upped my dosage on my medication. I have a follow up with him in August, but I’m concerned. I spoke with my PCP whom I have a great relationship with. She is also concerned and ran a bunch of blood tests. We also discussed birth control. Before I had CMD, I was using the daily pill. Once diagnosed, I was taken off it. The headaches worsened. She is wondering if going back on it could improve the number of headache days I experience. It doesn’t hurt to ask, right?

Part of me hopes that something comes from the blood work. Another part of me doesn’t want something to come of it… because I don’t need another problem on top of migraines. Either way, I’m to schedule an appointment with an Endocrinologist. Has any other Migraineur experienced anything like this? Are my hormone fluctuations common, or is it just me? I seem to have no answers, yet endless questions. I remain an Optimistic Realist – Accepting what is happening and hopeful about a solution. Life has to get better, right? Otherwise it’s just another day of “Migraine Roulette”…

Actively Proactive

I’ve been trying VERY hard to not let this Chronic Illness best of me.  For the first time in a year I’ve been counting calories and visiting the gym more frequently.  I’m not expecting the same results as last time ( 50lbs weight loss in 1year), but I would like to feel something- ANYTHING -that makes life feel normal again.

I was afraid to start on the elliptical, knowing my BPM has the potential to get above 140bpm when I use it.  Like everything else in Migraine life – Take baby steps and remember “Moderation”.  With the exception of one bad headache week, I’ve been managing to get to the gym at least 3 days a week.  My inner critic says, “You can do better.” I’m working hard to tell that voice to shut up.  Instead I will celebrate my little victory and know that 3 days IS something significant.

The longer I suffer from Chronic Migraine Disorder the more I feel like I need to view this as a new lifestyle.  Its not changing anytime soon and there still is little research being done, so I need to accept that I cannot change this and embrace life on my good days.  Stay away from any and all triggers, eat meals on a schedule (since lack of food is a trigger I recently learned), and HYDRATE HYDRATE HYDRATE!!  Lately I feel like I need to invest in Gatorade since I’m buying/drinking so much of it.

The more I learn about this disorder the more I am pro actively taking steps to improve my everyday life.  Baby steps, but hey- its something.

PS:  Thanks to all of the new followers and readers.  It’s nice to know my ramblings touch others.  Be well!