Migraine & Headache Awareness Month #10- Ocean's Eleven

Who's part of your migraine/headache disorder care team?  What essential roles still need to be filled?

I have been told by many doctors that I am an unusual case.  I have also had many doctors tell me that they could no longer help me because the 'traditional' treatments didn't work.  I think my father and I have covered most of the state of Florida looking for someone willing to help me find a solution to my chronic Cluster Headaches and chronic Migraines.    

When I went to the Clevland Clinic (in Florida) I was referred to a headache specialist in Tampa.  I was told that she was the doctor that taught all of the other headache specialist the cutting edge treatments.  When I called for an appointment I almost fell backwards when I was told they had a 10 month waiting list.  I was also told I had to send all of my medical records to the doctor to  determine if I was an appropriate candidate for her treatments.

Seven months into my wait I was called and offered an appointment the next month; I jumped at the offer.  That was almost 2 years ago.  While I am still suffering from debilitating cluster and migraine attacks, this headache specialist has supported me the entire way.  She doesn't ever look at me and say that we are at the end of the road.  She respects when I am uncomfortable with a treatment she is suggesting and doesn't try to force me into it.  With her help I continue to have hope every day.  

I also see a regular family doctor who takes an all encompassing approach towards working with me.  She is willing to communicate with my other doctors and make suggestions on treatment methods.  She also keeps track of my medical tests and medications from all of my other doctors to help prevent wasting time and money.

These two women make it easier to just breathe.....

June 2013, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The 2013 Migraine and Headache Awareness Month Blog Challenge is a project of FightingHeadacheDisorders.com.

Migraine & Headache Awareness Month #9- Mama Mia: Money Money Money

How does living with migraine or another Headache Disorder impact your financial situations?

While I live with the daily pain of cluster headaches and migraines I am not the only one who sufferers.  Due to my chronic cluster headaches I had to leave a my job in 2010.  This meant losing income and eventually my health insurance (have to be on husbands which costs an arm and a leg).  While I do receive SSI Disability, it no where makes up for what I have lost on a monthly basis.  On top of losing income I now have more doctors appointments each month to try to find solutions to my pain; that means a copay to the doctor each time.  I have monthly prescriptions that I have to have.  Along with prescriptions I have had different procedures throughout these last 4 years that cost a pretty penny.  None of this includes all of the gas money it takes for my husband and parents to get me to all of these appointments.  What really annoys me is that I have student loans that have to be paid monthly even though I cannot use my education at this time.

It takes all that I have to just focus on today and not stress about the future.  Just keep breathing......


June 2013, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The 2013 Migraine and Headache Awareness Month Blog Challenge is a project of FightingHeadacheDisorders.com.

Migraine & Headache Awareness Month #8- Little Shop of Horrors: "FeedMe, Seymour"

What comfort foods do you reach for when you have a migraine or headache attack?

Considering I gained 51 pounds since my diagnosis of cluster headaches in 2009 it is very clear that emotional eating is one of my favorite coping skills.  While the weight gain started due to medications I was taking; especially the constant steroid packs, I did not help myself with the 11pm chicken nachos or 4:30am bag of peppermint patties.  When I am in the middle of a cluster headache attack the only thing that I want to do is make it through it.  It is the aftermath of the cluster headache or during my migraines that I tend to get myself in trouble with food.  Some of my FAVORITE go to foods when I am feeling low are; McDonald's, cool ranch Doritos, chocolate and mambas (thanks sis).  During the few minutes it takes me to consume and of these items I am in my own little heaven.  It is afterwords that I realize that I am not helping myself.  So I have started to find new ways to cope other than always running to food.  I am improving on my meditation/biofeedback, take a walk or just breathe......


June 2013, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The 2013 Migraine and Headache Awareness Month Blog Challenge is a project of FightingHeadacheDisorders.com.

Migraine & Headache Awareness Month #7- Pretty Woman

What do you do to look good when you feel like crap?

Well one thing I shouldn't have done was gain 51 pounds; that sure didn't help!  So what I did was join weight watchers, try excercising when I feel well enough and try to find something else to do instead of emotional eating!  This has helped!!!!  I am now almost back to my weight before I started having Cluster Headaches in 2009. 
The main thing that I do is put on some lipgloss!!!!  Yup, I said lipgloss.
It is amazing how a little bit of color can make a HUGE difference.  And since I am a very low maintenance kind of girl when it comes to makeup, lipgloss was going to have to do.  I actually got the idea from a book that I read years ago; Why I Wore Lipstick to My Mastectomy by Geralyn Lucas.  Basically it is about trying to hold on to your feeling of confidence when facing a time that you do not feel comfortable with yourself. 
So many things changed when my Cluster Headaches began.  It wasn't just about feeling like crap.  I lost my independence, the ability to take care of myself in many ways, my self worth (I know many confident people who can't imagine feeling like this, but it is a reality).  I hit a two year window of feeling depressed (although never diagnosed).  It took me time and locating a new tools to deal with my new life before I really felt human again.  And the way I try to show the world that I am ready to face what life has for me is to put on my lipgloss and just breathe.


June 2013, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The 2013 Migraine and Headache Awareness Month Blog Challenge is a project of FightingHeadacheDisorders.com.

Migraine & Headache Awareness Month #6- Steel Magnolias: "That which does not kill us makes us stronger"

Cluster Headaches cause pain that I could never have imagined a person could live through; at times I am still amazed that I have.  With this pain I have learned that while something can stop me dead in my tracks, it can also make me stronger and a much better person than I could have ever believed.  I curse this thing that has been nicknamed 'Suicide Headaches'; while at the same time appreciating the lessons I have learned.
I am a virgo through and through.  I have my way of doing things, and it is the right way!
I try to tell that to this Beast we call Cluster Headaches and this Beast shows me how wrong I am everytime. 
So with my pain have come some important lessons....
1) Patience is a virtue.
2) It is okay if I can't stand on my own two feet all of the time (figuritively and literally).
3) Prioritize
4) Live life when I can and remember life when I don't feel well enough to live it.
5) I do have value and can help others.
6) Family and Friends are amazing and will understand my limitations.
7) Work is a job; not a life.
8) Laugh
9) Cry
10) You can't always win; but that doesn't make you a loser. 

Through these lessons I have come to to accept myself where I am in the moment.  Not to hang so tightly on the past and wish for a future I am unsure of.  With these lessons I am at the strongest point in this battle and can only continue to get stronger.  I don't know what my future holds but I know I can face it with a better outlook than I could have before. 

Here I am just breathing!!!!


June 2013, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The 2013 Migraine and Headache Awareness Month Blog Challenge is a project of FightingHeadacheDisorders.com.

Migraine & Headache Awareness Month #5- Carousel

Today's blog is based on the prompt "You'll never walk alone"

The day that I called HR to tell them that I wanted to go on short-term disability was the moment I felt most alone and betrayed in the world.  I felt that everything I had worked so hard for was gone and that I had been abandoned by my coworkers who had been some of my closest friends.  I quickly learned that I was 100% wrong and that those who had led me in the direction of leaving work really did care about me and wanted me to take care of myself.  With their prompt I have been able to start find ways to try to heal.

One of the important ways I have done that is by seeking out as much information regarding migraines and Cluster headaches that I can find.  I have sought out doctors who are specialists in the field and who are willing to work together towards a solution.  I have also taken to the blogs, facebook groups, twitter and other online groups to find others who are experiencing some of the same things I am going through.  When I speak of support groups, many times I get this "poor you" look from others.  I have even had people suggest that I should try to help myself instead of trying to find others to commiserate with.  At first I am hurt, but then I realize that these people have not experienced all of the good things I have from the groups I have found (not to say that all of my experiences have been rainbows and butterflies).  I have found individuals who have suggested alternative treatments to the ones I am using.  I have been able to rule out some of the treatments for myself based on others' experiences.  I have been able to talk about my fears and successes. 

Most of all I have been able to have a conversation with another person, instead of my cat. 
I have to say while I wish no one else ever had to go through the pain of Migraines and Cluster Headaches, it is nice to know that I am never alone and that there is always someone there to remind me just to breathe...... 


June 2013, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The 2013 Migraine and Headache Awareness Month Blog Challenge is a project of FightingHeadacheDisorders.com.

Migraine & Headache Awareness Month #4- Finding Nemo

It is hard to describe chronic pain to a person who doesn't experience it.  I know this because I used to be the person on the other side of the glass looking in.  I could never have imagined that a person who did not look ill could be living through horrible pain on a constant basis.  That someones smile may be masking the severe sadness/depression they were feeling by not living life.  That a "I'm good" or "Hanging in" could be a way to say that nothing is improving- I still feel like crap!!!!
That is the truth of chronic pain illnesses such as migraines and headaches.  In the last 4 years I have met so many people who do such a good job at pretending everything is okay and then in the times that they are alone suffer beyond belief.  That is my reality on a daily basis.  I am "faking it until I make it".  The only thing that keeps me moving forward is HOPE. 

Hope that there will be a solution and that my pain will decrease.
Hope that I can return to driving myself.
Hope to going back to work and being successful again.
Hope that I will make everyone proud of me again.
Hope that my parents will still be around to see me live life not just exist.
Hope that my relationship survives.
Hope that my daughter sees me as someone with goals and who she can count on.
Hope that I can begin to go out of the house and not feel anxiety over what I will do if I have an attack.
Hope that I can spend more time with friends.
Hope that we can stop spending so much on medical bills and prescriptions.

The hardest hand that migraines and headaches have dealt me is that I am stuck in a moment while the rest of the world is moving around me.  The way I get through that is to have HOPE that one day I will join them again. 

Until then I will just keep breathing....

June 2013, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The 2013 Migraine and Headache Awareness Month Blog Challenge is a project of FightingHeadacheDisorders.com.