Monday, October 14, 2013

October 2013 Headache Disorder & Migraine Blog Carnival

October 2013 Headache Disorder & Migraine Blog Carnival

 



I am excited to be hosting the October 2013 Headache Disorder & Migraine Blog Carnival.  I would like to thank Diana Lee from Somebodyhealme.com for extending this opportunity to me.  She has been hosting this blog carnival since 2007.  This months topic is Migraine Horror Story?:  How has living with Migraine changed you?

 

I would like to thank all of those who participated in this month’s blog carnival.  All of the entries are very honest and heartfelt. 

 

Emily of Migrainista shares her inner monster with all of you in her post The Monster Inside Me. 

 

Candy Meacham of Art of Migraine gives us a look at her life as her migraines changed from episodic to chronic in her post Who Am I now?.

 

Jaime M. Sanders of The Migraine Diva shares with us how isolating suffering from migraines can be in her post How Migraines Changed Me.

 

My submission The Beast left me disabled and lost can be found here at My life with The Beast.  My submission explains my horrors and understanding I found through living with chronic migraines and cluster headaches. 

 

 

November 2013 Headache Disorders & Migraine Blog Carnival Theme is:

Your favorite Headache Disorders related blog post since the last carnival.

 

Submission are due by midnight (the end of day) Friday November 8, 2013 and will be published Monday, November 11, 2013 by Somebody Heal me.  Submit links to somebodyhealme@gmail.com

Sunday, October 13, 2013

The Beast left me disabled and lost....

Migraine Horror Story?: How has living with Migraine changed you?

Sometimes I think the easier way to answer this question is to explain how Chronic Migraines and Chronic Clusters have not changed my life.  This post would be much shorter.  However, I think that would be the easy way out and not give a clear picture of how debilitating migraines and other headache can be.

Having dealt with other health issues throughout my life I came to think of myself as invincible.  Nothing could stop me as long as I was willing to push ahead.  I was very unsympathetic to others with ailments that kept them from work or socializing.  I did not understand the difference of being sick and being CHRONICALLY sick.  I didn’t know that a body could get so rundown that simply getting out of bed would be impossible on some days. 

My journey into the great abyss started in November 2009.  But to really understand how devastating things turned, I need to go back a few months.  In July 2009, I met three major life goals in my life.  I graduated with my Masters Degree, got married and became a stepmom to a 4-year-old girl.  I was quickly on my way to personal success.  Then in November 2009 my life took a drastic turn.  I suffered my first Cluster Headache.  The pain was so intense that I got on my phone and called my sister in a panic that I was dying.  The pain was so intense that all I wanted to do was die.  After that, the dominoes fell…

Within a year I had been through 7 different doctors who all agreed that I had Cluster Headaches and Chronic Migraines.  They also all agreed that they did not know how to help me.  So I got passed from doctor to doctor like a hot potato; finally landing with a doctor willing to take me on and help me make it through my daily challenges. 

The physical changes in my life are easy to describe.  Basically my body failed me in every way, shape and form until I could no longer manage daily tasks such as working, driving, socializing and (on some days) even taking care of myself.  After the physical changes I began to experience depression, anxiety and fear.  I could not explain how I went from a productive member of the world to a big blob on my couch within one year.  I could not help others understand why I was afraid to leave my house and leave myself unprepared to deal with an unscheduled migraine or cluster attack.  And I could not explain how ashamed of myself I was.  I couldn’t wrap my mind around the fact that I could not push through this.  I ridiculed myself for turning into a lazy, good for nothing person: a person who had given up.  While in my head I knew this was not the case, my heart was breaking and it was my fault.

I spent two years living and wishing for what I had.  Not accepting the road that I was on; therefore wandering around aimlessly.  I became angry, resentful and very unpleasant to be around.  I couldn’t stand myself and wondered how anyone else could stand me.  Basically, due to Chronic Migraines and Chronic Clusters I became a nothing.  I hit my lowest place when I became jealous of a person who had died from another illness.  In my mind the only thing I could understand was “at least they aren’t suffering anymore”. 

This was when I became desperate for a solution…..

My doctor enrolled my in a program for individuals with Chronic Pain from migraines and headache disorders.  This program was not a cure for my pain, but definitely saved my life.  In a week, I learned how to accept myself for where I was in every giving moment; not live within the past or wish for what I don’t have.  I was given new tools to deal with the pain.  I worked with a physical therapist to find ways to make myself stronger.  I found my will to fight and my hope to live again.

I completed the program a few years ago.  Since then I have been able to take a different look at how my life has changed.  While the above mentioned is still true and that life is a battle every day, I am able to see positive things that have come from suffering from Chronic Migraines and Chronic Cluster Headaches.  I am much more accepting of my own personal limitations.  With that understanding came an awareness to not judge others.  So many people in my life or strangers I come into contact with look at me and wonder how I am disabled.  I learned that disability is not always a visible thing.  And what may be manageable for one can be debilitating for others.  I have learned that not everything in life can be controlled; sometimes I have to just wait and see where life will take me.  I do much better with not worrying 24/7.  Worrying doesn’t make things better; it causes stress that is bad for my body.  I have learned to be my own advocate.  Through my journey for a doctor and treatment I came into contact with many people who were making decisions for me that were not right.  I learned to speak up and let people know what I need.  I am no longer a “Yes” patient.  Most importantly I learned that those who love me will make it through this journey with me. 

Sunday, September 22, 2013

Request for Submissions for October 2013 Headache Disorders & Migraine Blog Carnival

Hello Headache Disorders & Migraine Bloggers,

I am very excited to say that I will be hosting the October 2013 Headache Disorders & Migraine Blog Carnival.  My hope is that you will participate!!!!! 

The October Theme is:

Migraine Horror Story?: How has living with Migraine changed you?

While it is encouraged that participants write on the monthly theme, off-topic submissions may be accepted also. 


Submissions are due by midnght (the end of day) Friday, October 11, 2013.  The October 2013 carnival will be posted by me (My Life with the Beast) on Monday, October 14, 2013.

Email the link to your submission to somebodyhealme@gmail.com

Please include the following information:

1) Your name as you would like it to appear in the carnival.
2) The title of the blog post you're submitting.
3) The url of the blog post you're submitting.
4) The title of your blog.
5) The url of your blog. 

You can get more information about the carnival at:
bit.ly/HDcarnival

FAQ are addressed at:




Looking forward.............

November 2013 Headache Disorders & Migraine Blog Carnival Theme is:

Your favorite Headache Disorders related blog post since the last carnival.

Submission are due by midnight (the end of day) Friday November 8, 2013 and will be published Monday, November 11, 2013 by Somebody Heal me.  Submit links to somebodyhealme@gmail.com


Thursday, September 12, 2013

Finding Friends Through Pain

Growing up my family moved frequently.  I eventually developed an internal clock that would quietly whisper to me when we were in one place for too long.  I understood that moving was a necessity but not always my favorite part of family life.  However, I usually found friends quickly once our move was made.  In school, choir was my passion.  I wasn't the best singer but I always tried!!!  I enjoyed choir because no matter where we moved I would immediately have a group to be a part of.  
As I aged and stopped singing I learned quickly that I would need to start locating friends in other ways.  Even after I moved away from my family I continued the tradition of moving around.  In college, I met people who were studying the same degree as I was.  After graduating I found my friendships in coworkers, sharing our life experiences.  
Trouble occurred when I became ill.  Many of my current friends at the time were at a loss as to how to identify with me any longer.  I myself was unsure of who I was and what I had to bring to the table as a friend.  I've since lost some friendships, but I have found so many more.  Today, many of my friends are other sufferers of chronic pain.  Some may read that and think "what a bunch of downers", those people would be wrong.  I have found treatment ideas from my friends, support through the tough times and a tons of laughs.  Most of these friends live all over the world and I have never met them in person.  That's ok to me.  Through distance they show me that they understand my struggles because they are experiencing the same ones.  
I believe that a person can show empathy without walking a mile in my shoes.  But I believe true understanding comes from being in the trenches with me.  I wish everyday for the world to be pain free.  I would never wish my pain on another.  And I would love to take the pain of others so that they can have a moment of peace.  I hate suffering day to day; but I am thankful to have found my "choir" where I always fit in and everything seems to make sense.

Wednesday, August 14, 2013

Sears: Opps, we fell short!

Today I was asked to take a survey in regards to my contact with Sears customer service.  In the survey I responded that I was not happy with the service I received.  I explained that I received a 'cookie cutter' response that I know others also received.  Once again I told Sears that for 4 years I have been battling with my Chronic Migraines and Chronic Clusters.  That at this point in my life, managing my pain has become my full time job and not something anyone should ever make light of.  At the end of the survey this is what I got back.....

"Opps, we fell short!"

Really, I think that Sears just fell of the cliff!!!!! 

Please continue to make those phone calls and send those emails.......



More information on this topic:
See commercial: http://m.migraine.com/blog/migraine-stigma-kmart-sears-feeding-it/
This Migraine Life: http://thismigrainelife.com/?p=349
Please sign petition at: https://www.change.org/petitions/k-mart-remove-the-pharmacy-surprise-ad-from-airplay-and-issue-an-apology#

Tuesday, August 13, 2013

Migraines and Other Headache Disorders are not something to joke about!

Any of us who suffer from Migraines or other Headache Disorders have a clear understanding that they are nothing to joke about!  So you will understand my surprise and when I read a post from blogger Teri Robert; where she included a commercial from Kmart.  In this commercial, a man and woman are surprised by Kmart having a pharmacy.  They go on to state other surprises.  Please click the link below to read Teri's post and see the commercial in question....

http://m.migraine.com/blog/migraine-stigma-kmart-sears-feeding-it/


After watching this commercial I was outraged that Kmart (owned by Sears), would have the audacity to make light of a disease that has left me with debilitating pain.  I followed Teri's lead and emailed Sears.  Here is my email to them and their 'cookie cutter' response that I know other individuals have also received today after complaining....


Dear sears/Kmart,
 
I saw your commercial for Kmart pharmacy; where the woman says "I don't really have migraines." I am a sufferer of Chronic Migraines and Chronic Cluster headaches. In the last 4 years my life has virtually stopped because I have become disabled by the pain of my neurological disease! This disease has affected my life, my family's life and the lives of my friends. I am asking you to remove this ad!!!  You would never use this ad with statements like "I don't really have Parkinson's" or "I don't really have cancer". Why do you think it is okay to minimize my health issues?!
Until this ad stops, I will not be a customer of sears or Kmart and will ask anyone I know to also not be a customer. Please don't minimize some one's struggles!
 
Thank you,
Casey Russell



Dear Crussell,
 
Thank you for contacting sears.com. We apologize for any inconvenience or concern caused due to our recent pharmacy commercial. I appreciate the opportunity to assist you.
 
We regret that you found the commercial offensive as that was not our intent. We are listening to what you have to say and we appreciate the time you have taken to let us know what you think about the commercial. We are always looking for ways in which we can improve.
 
All comments, suggestions, contributions and indeed all feedback from our sears.com customers are very important to us. Please know that our management team reviews feedback submitted by our customers and that many of the changes and additions have been as a result of feedback from our customers.
 
Sincerely,
 
Elizabeth G. (nganapa)
Sears Customer Care


I also placed a phone call to Sears Executive Office on the suggestion of a fellow sufferer (Thanks Lisa M).  Where I was told that they had taken quite a few complaints regarding the 'Surprise, Pharmacy Commercial" today.  However, no decision has been made at this time regarding this commercial.

I am asking everyone to please write or call Sears and ask them to remove this commercial and to please think about what messages they are sending in the future.  You don't have to understand my daily battle to know that minimizing a person's health issues is wrong. 

Thank you!!!

You can go to Sears.com and email customer service or you make call Sears Executive Office at 847-286-2500.  

Also, check out more on this issue at This Migraine Life; Corporate insensitivity perpetuates stigma.
http://thismigrainelife.com/?p=349

August 2013 Headache Disorders & Migraine Blog Carnival

This month I participated in the Headache Disorders & Migraine Blog Carnival. Please check out the link below that will take you to all of the August 2013 Headache Disorders & Migraine Carnival. This month's topic was Headache Disrders and Suicide.

Closing the SEAMS in Migraine & Headache

Friday, August 9, 2013

Tomorrow will be better; till you get there...

When I talk about chronic pain I can see people cringe at the details of my daily life.  What people don't cringe at is the invisible hell I go through in my very personal/private battle.  That would be my battle of holding onto the hope that tomorrow will be better.
Battling chronic illness all my life, left me with a clear understanding of smiling through the pain and never giving up.  I lost all of that when I began suffering from Cluster Headaches.  And I lost myself when my Cluster Headaches turned chronic and I developed Chronic Migraines also.  I was hit so hard by a wave of depression that I lost my way.  I could not figure out how to get my feet underneath me and stand up.  This went on for two years.  By the end of it I didn't even recognize myself.  
See that's what is so hard about Chronic pain.  It pulls at you, wears you down and then kicks you to make sure you're not able to get back up.  This is why there is such a high frequency of suicide amoung those of us who suffer.  Many of us hold out hope for that next day, next hour, next minute; but when those next moments only bring more pain it is hard to believe that waiting will help.
Someone once said; "suicide is a quick solution to a big problem."  I believe this with everything I am.  It happens in that one moment when hope does not win out.  As a counselor my best solution is to keep a firm grasp on hope.  Plan for those moments when you can't see through the clouds. 
Some suggestions:
1) Create a safety plan- a safe place you can go, people you can call when you don't trust yourself.
2) When you're in a hopeful moment, write down all of the things you are happy about.  This way when you feel lost you can remind yourself of the good in your life.
3) Keep emergency phone numbers on hand so you never have a reason not to call.
4) If all else fails; call 911 or go to the nearest emergency and tell anyone and everyone that you need help!

Friday, August 2, 2013

Is being happy the same as being healthy?!

I can say that being happy can make me feel better but it does not make me healthy.....
I like this question because many people who see me would never realize how ill I truly am.  And many people who know me, can't tell how much pain I am in.  I learned a long time ago to put on a smile and move forward.  I created my catch phrase for "How are you feeling?" around the same time; "I'm hangin in."  
I don't know what it is, but when I am able to stay hopeful and smile, I just feel better.  Now I just wish my body would catch up and GET HEALTHY!

Monday, July 15, 2013

How do you prioritize life?

This is a difficult question for me; one I struggle with everyday.  For over two years I spent my life in my house; fighting to get through each Cluster Attack.  Many times I would feel like a bear hibernating.  The only difference was the bear got to leave his cave when it got warmer; I got to leave mine to go to a doctor's appointment.  While those days were lonely, they were easier in many ways.  When I began to slowly start living my life again despite my Cluster Headaches, it meant that I would have to find a way to step out the door.  I do not currently take any preventative medications, none worked for me.  So I rely on my abortive medications that can leave me lethargic and fuzzy brained; that is when it works at all.  The cherry on the top of this sundae is that I can only use so much of this medication a month.  For a person having 6-8 Cluster Attacks a day (chronically) and Chronic migraines on top of that; my 5 vials of meds do not help 90% percent of the time.  So what I have had to learn to do is plan my life around my priorities.  Meaning: what gets top billing and what can I absolutely skip.  While I would love to put family at the top; it is not possible.  My top billing has to go to doctor appointments.  What I have come to find out is that doctors will FIRE you as a patient if you miss regularly scheduled appointments and rescheduled appointments from the ones you previously cancelled.  So this means I have to have my emergency meds on hand so I can make it to my appointments.
Family definitely comes next.  This is a bit easier to control because my family accepts me for who I am.  So they know that if I am having a bad day and already used my weekly allotted medication, I will either cancel or give my best try to go and not allow the BEAST to take over (it kinda looks like a remake of the HULK when this happens).
Friends tend to get the bottom billing.  And this is a tough one to admit because I have some amazing friends who have stuck by me through all of this.  But I only have so much medication to go around.  And I am still extremely embarrassed to have attacks around others and I avoid it at all costs.  Sometimes that cost is a friendship.  
So until someone finds a better solution I will continue to live my life by the moments I can be a part of.  

Wednesday, July 10, 2013

Friendship.....

I have mentioned before how lucky I am to have the family and friends that I have. Throughout the last four years the people in my life have shown overwhelming understanding and support.  Through them here is what I have learned about friendship.....

1.  It's okay to be silent.
Friendship is not always 50-50.  Just like any relationship there will be times when one person in the relationship needs more support than the other.  Sometimes I feel overwhelmed with what is going on in life, but that doesn't mean that I am the only one who is overwhelmed.  It is always important to remember that no one's life is stress or drama free and there are times when everyone needs to vent.  So at times, as a friend, it is important to just be silent.  Let the other person get all of their frustrations out.

2.  No invite is not always an insult.
I have never been the life of the party; that doesn't mean I don't like to party.  So after I began suffering from Chronic Clusters and Migraines my feelings began to be hurt when I would hear about my friends' outings without me.  It wasn't that they were having fun without me; it was that I didn't even get an invite. It took me a while to see that most of those friends were not inviting me because they were trying to think of my feelings.  Making plans is a difficult thing when suffering from chronic pain and canceling plans is even harder.  So most of my friends tried to take the canceling out of the equation by just not inviting me.  

3.  Each friendship is important; even when they do not last.
I have made great friends and I have lost great friends.  Sometimes it is due to distance, difference of opinions or the relationship ran it's course.  But I can honestly say that I have learned a lesson in each friendship I have experienced.  Not all lessons have been pleasant, but I have always learned from them.

4.  Allow people to leave and return.
As I said before; friendship is not always 50-50; sometimes it turns out to be 100-0.  I have experienced this a lot since becoming chronically ill.  There have been times in these last 4 years that I have had to let a friend walk away when they did not know how to be what I needed.  I have had to walk away from friends when I couldn't meet their expectations.  I will admit that some of my friendships did not survive, but most did.  The natural reaction when you feel someone lets you down is to not trust them again.  But I have learned that I am no more perfect than the other person.  So I have learned to take a step back and understand that a situation does not define a whole person.  

5.  Honesty is the best policy.
I have learned to be honest with my friends.  If they hurt my feeling, I tell them.  Walking on eggshells with someone who is a friend will only get you dirty feet!  Those who truly love me and want the best for me will accept me for who I am; mistakes and all!

This post came after conversations with two people who mean the world to me.  So I would like to thank them for the idea and for the unconditional support they have always shown me!!!

Headache Disorders & Migraine Blog Carnival

This month I participated in the Headache Disorders & Migraine Blog Carnival.  Please check out the link below that will take you to all of July 2013 Headache Disorders & Migraine Carnival.  This month's topic was Travel Tips.....


http://somebodyhealme.dianalee.net/2013/07/travel-tips-july-2013-headache.html


Friday, July 5, 2013

Traveling with Chronic Migraines & Cluster Cluster Headaches

Leaving my house since I became Chronic with Migraines and Clusters is not my idea of a relaxing time.  So when we began planning our first trip in 4 yours this past June, I began to panic.  My thoughts kept going to the many ways this could turn into a disaster.  So I reached out to my circle of support and asked for ways to calm my nerves.  I quickly came up a travel plan.....

1. Have medication, will travel.  I made sure that I had enough daily medications and emergency abortive medications to keep me as comfortable as possible for my 5 days away from home.  

2. Keep my meditation and breathing exercises close.  I downloaded all of my exercises on my iPod shuffle so I could use them to keep myself calm no matter where we went.  

3. Plan to wear layers.  Temperature changes of any kind can trigger Cluster attacks for me.  So I made sure I packed tank tops and carried sweaters at all times so I could try to keep my temperature regulated no matter what temperatures I encountered.  

4.  Pace myself.  Since we went to visit family, my want was to be as involved in as many activities as possible. I have suffered from insomnia for the past 4 years.  Sleep and naps can trigger attacks for me.  So it was important for me to make sure that I rested when I needed.  This meant missing some family time, but made the overall trip much better.

5. Eat regularly and stay hydrated.  It is very normal for my feeding and watering schedule to fall around my Migraines and Clusters.  With Migraines I tend to get very nauseous and the thought of moving to eat food is not appealing.  With my Clusters I have a tendency to eat because sitting still is not an option.  These behaviors are not helpful for providing my body the nutrients I need to be as healthy as possible.  So what I am trying to do it eat healthy meals and snacks throughout the day.  This way if I can't eat due to a Migraine, I am not sending my body into a nose dive.  And if a Cluster hits I try to munch on healthy snacks or find another safe physical activity to do.

6. Enjoy the moment I'm in and don't worry about the next moment.  My anxiety tends to increase when I focus on the big picture instead of the small details.  When I worry about how long we will be from home, how many people I will be around, what perfume/smells I will come into contact with, ect.- I begin to stress. Stress = increased pain
So I try to focus on concurring one moment at a time.  

I wish I could say that I enjoyed a pain free trip, but those of us who are Chronic know that would not be likely.  Three out of the five days were tough.  On the day we were scheduled to leave I woke up in a Cluster attack, with. a migraine, dizzy and I became nauseous every time I moved.  I did not think getting on a plane was going to happened.  I quickly put my plan into action and saved the day- we made our flight home; back to my safe haven. 
Traveling with Chronic Migraines and Chronic Clusters is no high on my priority list.  But it was nice to see that it could be done.  A few things I added to my traveling tool kit for the next time....

1. Bring an essential oil or vicks vapor rub to use as a barrier from other smells.  I have learned through trial and error different smells that will calm the BEAST and others that will send the BEAST into fight mode.  I will make sure the next time I travel I bring them!!!

2. Keep a shower cap handy.  Showers are a must. I use them daily to get clean but also as a way to calm myself during a Cluster Attack.  Having a shower cap means I can jump in a shower whenever I need to and not worry about having to do my hair every single time- that can be exhausting!!!

3. Only pack needed clothes.  I tend to struggle with what am I going to wear when not feeling well.  All of the choices tend to send my brain in overdrive.  This trip I only took what I needed, so there was not any time wasted trying on different outfits or worrying about what I was going to wear.  Less stress = more relaxation!!!!!!

I felt so good about my trip that I am also trying to implement these ideas into everyday life so my anxiety around leaving my 'safe place' decreases. 

Sunday, June 30, 2013

Migraine & Headache Awareness Month #30- 2001: A Space Odyssey

2001: A Space Odyssey: "I am putting myself to the fullest possible use, which is all I think that any conscious entity can ever hope to do."

Write a letter to a fictional Headache Disorders patient encouraging that person to be kind to him or herself.  Use the ways you're too hard on yourself as an inspiration.

Dear ------,

I am so sorry that you have finally come up against a Beast like no other.  I know that throughout your life you have probably conquered so many forms of pain that you never imagined that anything could stop you.  I am asking that you just take a moment and breathe.  Clear your head and prepare yourself for the fight of your life.  There are going to be days where you may not believe that you can get through it or that you may not want to; I am here to tell you that you are stronger than you think. 

The first thing you need to do is take an inventory of those who are in your life.  Understand that many will walk out on you when you need them the most; not because they don't care, but because they do.  It is hard to see someone you care about suffer.  Understand that forgiveness will be needed through this process.  In the end, many of the people who left you will come back.  Let them in and take the love and support that they can give. 
The family and friends who stand by you need patience.  You need to cherish those relationships even when you are at your worst.  There are going to be times when you are angry at the world.  Please be careful not to take this out on them.  Don't take them for granted.  Know that when you hurt they hurt.  And have faith that they still see you as the amazing person you once were; they probably see it better than you do. 

Second, be patient with yourself.  I have an eight year old daughter who gets frustrated when things get to hard.  Many times she wants to walk away if she can't do it right the first time.  This tends to scare me; no one should ever give up.  But then I stop and think about myself.  There have been days when I have not given myself the patience to try again.  Learning to live with chronic pain is a daily battle; one that you will not conquer your first time out.  So don't give up.  When you see others in pain who are still working, having children or driving; don't get mad with yourself.  Take a moment and remember that in this moment you are doing the best that you can.  Maybe one day you will be able to do more; but until that day comes accept where you are at.

Third, remember how wonderful you are.  Chronic Migraines and Chronic Clusters are going to take your self esteem, your independence and attack your self worth at one point or another.  The medications you take will make you tired, forgetful and have you gaining weight.  The surgeries you try will sometimes make things worse.  It is at this point that you have to do what it takes to remember who you are.  Migraines and Headache Disorders will start to become who you are.  Fight this.  Be more than your disability.  You may never be able to work again, don't let that stop you from hoping.  Don't ever give up on fighting for the person you are and the person you want to be.  Maybe you won't ever get there, but if you stop fighting you know getting there is not even an option.  Leave yourself open for options. 

And lastly, don't live by the judgements of others.  I have tried to hide my pain because showing it is scary to myself and others.  I have attempted to live the life that others think a disabled person should live.  I have beat myself up because people do not understand.  STOP DOING THIS!!!!!  The only people who truly know what you are going through is you and other sufferers.  I am lucky to have a family who loves me and tries harder than I think I could to understand and support me.  But at the end of the day, even they can't know it all.  Be okay with that.  Don't ever wish for someone to understand what you are going through.  To wish that would be to wish this pain on them.  Be happy that others support you and those who don't, let them live there life. 

It kills me to know that you understand my pain.  I wish you didn't.  But since you do, we are now family.  We will conquer The Beast together.

Love
Casey

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 #29 Misfits

If you live with Chronic Migraine, incorporate it into today's post...

Chronic Migraine is defined as suffering 15 or more migraines days in a month.
Chronic Cluster Headaches is defined as suffering 1 year without a remission period or remission periods lasting less than 1 month.

I am not sure how to write this post since the majority of time I do not feel that I am living with my Chronic Migraines or Chronic Clusters.  I am still at that stage of learning how to do that.  Maybe that is what makes me a Misfit today..... that I do not yet have the answer as to how to live with them. 

Prior to my Cluster attacks, I was living with my Chronic migraines by using abortive medications and by pushing through.  At times it was a welcome distraction to have the responsibilities of work.  I could compartmentalize my pain while I was helping others deal with their struggles.  But once my Clusters hit and when they became Chronic my life quickly stopped.  I stopped working, driving, and socializing.  I fell into a depression that I could not see my way out of.  But then my doctor intervened and had me participate in a week long Headache Clinic where I learned valuable skills to begin living with my chronic pain.  I have to admit that since April of 2012 I have started to put one foot in front of the other.  But it is a slow process and I am still learning to walk. 

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 #28 Saturday Night Live

How does humor help you cope?

I think there comes a time when I just need to laugh.  On a daily basis I am dealing with pain, frustration and boredom.  So it is always nice when I can break up the usual with some humor.  For that I tend to turn to my family and friends.  It is nice when I can take a break from the seriousness and just act silly.  We can joke about my pain and at times the humor helps me take back some control.  The Beast doesn't seem so scary when I can turn it into a joke!!!!



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.

Thursday, June 27, 2013

Migraine & Headache Awareness Month #27- Anger management: Goosefrabba

How do you constructively deal with the anger and resentment that arises as a result of living wit Migraine/Headache Disorders?

When my Chroinc Clusters first began in November 2009, I dealt with the pain and the emotions caused from it by working.  While I struggled with work, it was a good distraction.  When working got to be too much for me and I left in 2010, my coping skills were not enough to get me through for very long.  For two years I spent life in a fog; not from medications or pain; but from my inability to deal with my life.  What I struggled to deal with was how overwhelming all of the fall out from constant pain is.  In an instant I didn't just have to learn how to carry myself through my pain, I also had to deal with losing my identity (leaving work and not driving), having a massive hit to my self esteem and my constant need to explain my pain to others so they would understand my choices. 
It wasn't until 2012 that I spent time at Tampa General going through the Headache & Chronic Pain Clinic that I learned how to better cope with everything that comes along with chronic pain.  I learned to take every day as a new day with new possibilities.  I began to understand that I didn't have to fight everything at once.  I could live in the moment and then take on a new moment.  I found new faith in myself as a productive member of society, even if I am not contributing in the way that I want.  And I spent a week with a physcial therapist who helped me find ways to make myself healthier; in the end, helping with mangaing my Cluster Headaches, Migraines, Daily Intractable Headaches and the chronic pain that comes from it all.
I will admit that I am not perfect when it comes to dealing with my emotions; especially anger and resentment.  I am very sensitive, I tend to overreact to situations and it is hard on a daily basis to not let the emotions from my Migraines & Cluster Headaches/Headaches spill into all other experiences.  When this happens I turn to my family.  They are the ones I know will tell me the truth, let me have my breakdown and support me as I find my way back to sanity.  You see, I am not the only one who has to deal with the emotional fall out from my pain.  My life has changed, but with it, I take everyone else in my life on this journey.  It is unfair, but I don't know how to seperate my pain from my life; therefore, I am unable to seperate it from my daily interactions.  I could not do it without the support of my family.

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 #26 Men in Black: Migraine Neuralizer

How do you cope with the way Migraine/Headache Disorders can impact our memories?

This prompt led me to look at this question in two different ways.  I have included my thoughts on both......

One:
With Migraines and Headache Disorders comes treatments- LOTS OF TREATMENTS!  With the treatments comes side-effects.  Forgetfulness, fumbling of words and straight out memory loss are some big ones.  When I was working I would struggle with this due to having to keep track of appointments, session notes and conversations.  Initially, it seemed pretty easy to keep track of things; I just had to make sure I was diligent in keeping notes.  While this added time to my day, in the end it was a huge help, so I didn't mind.  But after a year of trying different meds and piling one medication on top of another, I got to the point that I did not know which way was up or down.  There was a period when I first got out of the hospital after 4 days of constant IV meds that I knew I was about to hit my brick wall.  My father was driving me to work, I would dose off without notice and I could barely see straight.  It was at this point I knew something had to change; I couldn't live like this. 
I would like to say that all of the medication were helping me.  But they weren't.  Instead I was just so discombobulated by the medication that I didn't care what I was going through.  Four months later I made a decision to stop taking all of my medication and at least live in the real world.  This soon meant leaving work due to the amount of pain I was suffering with.  At that point I thought it would be easier to go forward in life, even if there were some long-term memory loss due to previous medications I had tried.  While it is a bit more "acceptable" to suffer from my memory loss since I am not working, it is not any less annoying.  So The best way I know to deal with it is to write everything down!!!!!! 

Two:
Since my attacks hit what I consider my catastrophic level, my memories have been greatly impacted.  Right before I started suffering from Chronic Cluster Headaches I celebrated two accomplishments in my life; graduating with my Masters Degree and getting married.  In July 2009, I was in the clouds with all of my excitement.  The life I had always dreamed about was finally beginning.  Three months later I was hit with what felt like a semi truck and all of my memories changed.  I have worked very hard to try to accept who I am, at this moment, and not spend 24/7 dreaming of what I thought life would be like.  But I have to admit that more times than not, I am stuck in the quicksand of 'what if''.  My memories are now sad reminders of the person I used to be and they make me jealous for what I no longer have.  Believe me when I say that everyday I work to be patient and understand that while I may not be who I always wanted to be; I am the best me that I can be today. 

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.




Tuesday, June 25, 2013

Migraine & Headache Awareness Month #25 Lincoln

Who's your favorite historical figure who lived with migraine or another Headache Disorder?

This is a hard one....  There are many people who are well known who suffer from Migraines. 
Macia Cross (actress- Desperate housewives) is a migraine sufferer who speaks out about using Imitrex for migraine treatment.
Lisa Kudrow (actress- Friends) suffered from migraines as a child.  Her father is a migraine specialist who started the use of lidocaine as a migraine treatment.
Virginia Madsen (actress- Sideways) uses Botox to treat her migraines.
Elvis Presley (come on now, we all know who he is) suffered from severe intractable migraines.  Many of the drugs found in his system when he died are drugs that are known to treat migraines.........

But I would have to say that Terrel Davis (football player-Denver Broncos) is my top pick. 
In the 1998 Super Bowl the Broncos went into the locker room  leading at halftime.  But one player had been sidelined in the second quarter due to a migraine attack- Terrel Davis.  He actually thought he was going to have to sit out of the 2nd half due to the pain.  However, the halftime show ended up being longer than usual, this gave him time to manage his attack.  He went on to end the game with 157 yards rushing on 30 carries and 3 touchdowns. 

This to me gives new meaning to just breathe!!!!!!

While I am a chronic migraine sufferer; I also suffer from intractable daily headaches and Cluster Headaches.  Since my diagnosis I have done tons of research regarding Cluster Headaches and have been unsuccessful in finding prominent figures who have disclosed a diagnosis of Cluster Headaches.  In 2012, Danial Radcliffe (actor- Harry Potter) admitted that he had to cancel some of his commitments due to suffering Cluster Attacks. 

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 #24 Risky Business

Each time you try a new treatment you take a risk.  How do you initiate a discussion with your doctor so you can make an educated decision about trying it as a team?

I am all about open and honest communication with my doctor.  I look for doctors who want to work with me and with my other doctors to find the best possible solution.  I have had experiences in the past when I had a doctor who did not want to hear my opinions or ideas.  I've also dealt with some doctors who don't want to work with my other treatment staff.  Those are red flags that my best interest is not their concern. 
Prior to any doctor visit I reach out and do research on possible treatments that I have not tried.  When I am with my doctor I will bring up the treatments and get her opinion on them.  Usually she will allow me to make the final decision on a treatment unless it is something that she 100% knows is not a good option for me (and usually I know this prior to walking in because of my research). 
I know many people are afraid to take control of a doctor appointment, there are still many times when I feel overwhelmed and can get lost in an appointment.  That is why I suggest that you always take someone with you.  That way you can feel that you have some support on your side and when your brain is exploding; you have someone there to take notes. 

Please know that in the end you are the one going through treatments.  Relaxing and breathing are great when in an attack, but ignoring risks to possible treatments can prolong your pain!!!!!!


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.

Sunday, June 23, 2013

Migraine & Headache Awareness Month #23 Bruce Almighty

How does spirituality and/or religion help you cope?

As far back as I can remember my mom has always told me "there is a reason for everything".  I can honestly say that I believe that statement.  To this day, I know that I would not be here without believing that GOD has a bigger plan for me.  It may have nothing to do with what I want; remember, it's not supposed to be my plan.  But through all of this I will come out the other side greater than where I began.  
When I am in my moment of despair I always know it.  I am laying on the floor of the shower; praying for GOD to just get me through that moment.  Just one simple moment.  I know not to ask for to much.  My approach is get me through this moment and then we can see how things go.  
Spirituality is my crutch.  It helps me hobble through the mess.  I hobble and 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.

Friday, June 21, 2013

Migraine & Headache Awareness Month #22- Walk the Line

How do you balance the need to avoid your Migraine/Headache Disorder triggers with the equally powerful need to enjoy the things that give your life meaning?

I will admit that I am not good with this at all.  The main way I find to deal with my triggers is to avoid them.  What I mean is I completely avoid most things that bring meaning to my life. 
I have spent the majority of the last three years at home.  The first two years were due to my complete inability to deal with the pain and my embarrassment over others seeing me during an attack.  The last year is due to knowing that I cannot always control my environment or my triggers when away from home.  This is not how I want to live my life and am working hard at getting better at taking chances. 
One of my easiest triggers to avoid is alcohol.  I found that wine, beer and some liquor tend to send me right into an attack.  SO I just don't drink.  This is not a very difficult thing to manage.  The only thing I really miss is the taste of beer and there is always O'Douls for that.
One of the hardest triggers to avoid is smells.  I would like to say it is only perfumes or lotions that trigger attacks, but I am not that lucky.  I am sensitive to strong food odor, outdoor smells like grill smells and even some doctors offices are too much to handle due to the disinfectants that they use.  While I think of myself as a VIP; I have still not mastered the art of having every place I go odor free. 

The pain is what really keeps me from life.  I don't understand all of my triggers and many times the attacks seem to come without any rhyme or reason.  Due to this I tend to hide out.  If you have never seen a Cluster Attack you should check them out on YouTube.  When I have an attack of the Beast, I am scary.  If the pain level rises to a 7 or above- WATCH OUT!!!  There is no relaxing or hiding at that point.  They can be very embarrassing and even scary.  It has only been in the last year that I have learned how to use relaxation techniques to help me cope.  But there is never a guarantee that I can get control of an attack before it spins out of control.  This is not something that I am interested in letting the whole world see.  It leaves me feeling very vulnerable. 

So I hide out and keep breathing.....hopefully not for good!

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 & Awareness Month #21- Oblivion

I am not a sci-fi fan, so I had to look into what the movie Oblivion was all about to understand where to go with this post.  The shortest explanation I can give is:
The earth was invaded by aliens and almost destroyed the earth.  Memories were wiped and people had to fight to save humankind.  In the end, part of the earth is recovered and the aliens are defeated.....Hopefully that is correct and makes sense.

The way that I relate this story to my life is through my battle of the Beast.  I have dealt with and conquered many health problems in my 36 years.  However, from my first Cluster Attack I knew that this would be different.  This was a pain that went straight to the core of me, leaving me to wonder how I was still alive.    To survive I have had to use all of the resources I have and look outside myself for more.  Each day I wake up not knowing what will come or how I will face it.  I have had to get creative in my battles and at times have had to wave the white flag at the Beast.  To this day I have not regained back my life, but I am living more than I was at the beginning of the attacks.  My hope is to one day either conquer the Beast or at least find a way to coexist with it.   

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 #20-Star Trek: Generations

What role do Migraine/Headache Disorders play in your family?  Do others live with it?  Does this make a difference in how you talk about it?

I have suffered from headaches since I was around 12 years old.  Growing up it was not anything that I really discussed with my family, it just was a part of life.  I was diagnosed with Migraines at age 18, Chronic Daily Headaches at age 29 and Chronic Migraines and Cluster Headaches at age 33.  Throughout each diagnosis my family has been very involved in helping me research what I was experiencing and forms of treatment.  Throughout the years my parents and sister have experienced Headaches and Migraines, but no formal diagnoses were ever made that I am aware of.  The fact that they have not been diagnosed has never impeded their ability to try to understand my experiences or to support me when needed. 
It was my parents who would try to help me when I was younger when I started suffering from headaches.  Even prior to my first diagnosis, they were always supportive.  Constantly searching for answers on how to help me.  That has never changed.  To this day, my parents attend the majority of my appointments with me, voice opinions when they are concerned about the treatment I am receiving and help me make choices on how to best attack the Beast.
My sister received the phone call during my first ever Cluster Attack.  I thought I was going to die.  She talked me through it and then helped me research what I was experiencing.  She has been very helpful with searching for different forms of treatments to discuss with my doctors. 
My brother has added humor since childhood.  He took a scolding from a doctor when he responded to the doctor's question of "What should we do with you?" with saying VAPORIZE HER.  He tried a sugar free diet with me as a child.  And he listens to me when I am upset about how things are at this moment in my life.
I can honestly say that I do not know where I would be without my immediate family.  I am one lucky girl.  I know many others who suffer alone or in silence due to not having supportive people in their lives.  My parents and sibling are just the beginning of the list of those who support me.  Most of whom do not suffer from Migraines or Headaches on a regular basis. 

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.

Wednesday, June 19, 2013

Migraine & Headache Awareness Month #19- Eat Pray Love

Share your favorite Migraine Trigger-free recipe

As I have admitted before; I am an emotional eater.  It is no surprise that when I am having horrible Migraine or Cluster Attacks I reach for food. I found this simple recipe on Piniterest...

Cool Whip Cookies (by Good yams on December 13, 2009 in Cookies, Desserts

Ingredients-
1 package (18.25 oz box) cake mix
1 cup cool whip
1 whole large egg
1 cup powdered sugar

Directions-
Set oven to 350 degrees
Mix all ingredients, except powdered sugar.  Roll a spoonful of dough in powdered sugar.  Place on a cookie sheet and bake for about 8 minutes.



These are easy, quick and delicious!!!  I usually make them with chocolate cake mix since I love chocolate.  But many people find chocolate as a trigger, so vanilla, lemon and strawberry mixes work just as well!



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.

Tuesday, June 18, 2013

Migraine & Headache Awareness Month # 18- Die Hard: Now I have a machine gun. Ho, ho, ho."

Devise a make-believe weapon to blast Migraine/Headache Disorders out of your life....

When I think about a make-believe weapon to blast my Cluster attacks and chronic migraines I can only think of the weapon from my favorite movie of all time- Despicable Me from Universal Pictures.  When the movie first came out I knew this was a movie I had to say "IT'S SO FLUFFY"!  The second I saw the machine that would shrink the moon, I knew that I had to have it.  Unfortunately I am not a science whiz.  So all I have now is my dreams.  I dream about the day that the machine shows up at my door and "Vaporizes" my pain!!!! 


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 #17- Mission Impossible

Mission Impossible

What do I find impossible to do?  PACE MYSELF!!!!!

I have never been the type of person who has to be doing something all of the time.  I will admit that I have been guilty of loving lazy days and napping at all hours.  But since my Cluster Attacks started I do not take the time that I should to always take care of myself.  On bad days it is impossible to accomplish anything other then to get through the day.  So when a decent day hits; when I get breaks through my attacks, I try to fit everything in.  I try to have as much fun as possible, catch up on my long to do list and I keep going.  Some may say that is what living life is all about.  But what I have learned is that by doing to much all I do is continue the cycle of more attacks.  I end up paying for that afternoon out for the next three days. 
While I sit here typing this, the idea of pacing myself makes so much sense.  But the reality of it is that my life is put on hold on a daily basis.  So when I get the chance to live it, even if that just means emptying the dishwasher, I have to jump at it.  That is why it seems to be my mission impossible.  I don't know how to create a happy balance. 


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.

Sunday, June 16, 2013

Migraine & Headache Awareness Month #16- Riverdance

Have you found a way to work exercise or movement into your life with Migraine/Headache Disorder?  What is it?

After gaining 51 pounds from countless medications that include the wonderful side effect of WEIGHT GAIN and going from working to being a bump on a log; I was ecstatic to find a physical therapist who could help me out.  Anyone who suffers from chronic pain knows that finding motivation to work out and keep that bikini one piece body is almost impossible.  But it was either do that or live on the floor of my closet for the rest of my life.  Luckily, I found my salvation in the form of a physical therapist at Tampa General. She taught me that the key was to hit my target heart rate without triggering an attack (let me tell you, that is easier said then done).  With a treadmill at my house, she focused on ways to get me moving by walking whenever I could handle it.  Instead of increasing my speed to get my heart rate up, I increase my incline.  So I am able to get moving without being a bobble head- which tends to trigger attacks like MAD!  To increase my amount of movement I tend to walk between attacks and try to walk 5 minutes every hour.  I have found that by doing some type of physical activity throughout the day tends to be more productive then walking for 30 minutes and then sitting my butt on the couch for the rest of the day.  I have also been able to keep this consistent for a longer period of time, instead of exhausting myself one day and then not doing anything for 3 days after.  It is all about a balancing act and working within my limitations.  I have lost 47 pounds to date and hope to lose another 15 pounds.  My hope is to be as healthy as possible to help me through the chronic pain as much as I can.  Sometimes it is hard, but I 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.

Saturday, June 15, 2013

Migraine & Headache Awareness Month #15- Harry Potter

Write & name a spell for getting rid of a Migraine/Headache attack

When a Cluster Attack hits the following ingredients get me through...... STOP, DROP & ROCK

1. Meditation/Biofeedback
2. Sitting on the floor of a HOT shower
3. Pacing
4. Rocking
5. Phone a friend
6. Imitrex
7. Ice Packs
8. Curl up in fetal position
9. Repeat until attack ends
10. 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.

Friday, June 14, 2013

Migraine and Headache Awareness Month #14- Letters to Julia

Write a thank you note to someone who has helped you.

Dear ------,

I cannot thank you enough for looking past my limitations and accepting me for who I am.  Sometimes I worry about how my illness will affect you as the years tick by.  My hope is that you will learn how to persevere through tough times.  I am afraid that you will not see the whole me but only the 'sick' version of who I am.  I have so many life lessons that I want to teach you and so many things I want to experience with you.  Your level of understanding surpasses even mine at times; that is when I tend to forget who I am dealing with.  I thank you for your silly stories that make me laugh.  I thank you for all the times that you help me get lost in a moment.  But most of all, I thank you for being you!  Your love has been unconditional and that makes life a bit easier every day. 

Love
me

Why smile?

If we smile through our pain, are we really suffering?  That is a question that many think but few ask.  Cluster headaches have not left me without a limb, unable to feed myself or with the inability to think on my own. However, it has left me alone in my suffering more times than I care to think about.
Sharing these feelings is difficult, but necessary.  Last week a member of the Migraine and Headache community committed suicide.  She was a young woman; only 22 years old.  She had her entire life ahead of her, but could not imagine facing another day in such horrible pain.  
My heart aches for the loss of this girl.  I have an understanding of her struggles that I wish I didn't.  There are days when the pain is so powerful it is difficult to put one foot in front of the other.  On many occasions I have had to force myself to smile through horrible pain.  It is in those times that I wonder if I am doing myself and everyone else a disservice by putting up such a front.  I get upset because so many people think that because I am smiling that I am better.  The truth is I smile because on the days that I can't it gets harder and harder to find my way out of the darkness.  I smile because I am happy to have made it another day.  To have time with my family and friends.  At times, making the choice to smile is the only power and control that I have. 
While it is hard for me and confusing for others, I will continue to smile and breathe.....

Thursday, June 13, 2013

Migraine & Headache Awareness Month #13- Sophie's Choice

What are the toughest treatment choices you face when balancing Migraine/Headache Disorders with other health conditions?

I would like to say that Migraines and Cluster Headaches are the only health problems that I have, but like so many other who suffer from both, I have other health issues to contend with.  Treating me becomes a type of balancing act amongst my doctors.  I think the toughest treatment choice is how to prioritize my treatments. I have worked hard to find doctors who are willing to communicate with each other or at the very least review my progress in all of my health areas.  There have been times that a medication I am prescribed by one doctor has caused  complications with my treatment from another doctor.  At that point it is up to me to figure out how to proceed.  My doctors can give me all of the information but at the end of the day, I am the one who has to decide what challenges I am willing to face and when to throw my hands up and say enough.
Saying enough is very hard for me.  In the past I have been "the good little patient", but most times that led to more pain and frustration.  Through my support team I have learned to be my own advocate.  To educate myself to the best of my abilities and become an active participant in my own treatment.  I have also learned to make it clear where my limit is and to say no when that limit is reached.  There are still times that I worry that I have not gone far enough to get the best results but in the end I have to trust my gut.  I am always looking for new ideas and until I find my solution 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.

Migraine & Headache Awareness Month #12- The Box: You are the experiment

What situation in your Migraine/Headache Disorders treatment has made you feel most like a guinea pig or lab rat?

I have had migraines since I was a teenager and am now in my 30's, I was pretty used to what the migraine experience was all about.  So when in November 2009 I experienced a pain that I had never felt before and could not imagine living through I knew that something was wrong.  After tests and a change in neurologists I was diagnosed with Cluster Headaches.  Not having any idea what this was or how to treat it, I put a lot of faith in my neurologist at the time; BIG MISTAKE.  From the beginning I was prescribed numerous drug cocktails that were changed on a weekly basis.  Meaning that I was unable to tell if a drug was working because of all of the different side effects and because my body was never given enough time to truly acclimate to the medications.  After 6 months of no improvement, my neurologist decided that I should spend time in the hospital getting IV medication 24/7.  This measured up to me being so medicated that I could not tell who was coming and going.  I could not tell if my pain was improving because I could not stay awake long enough to measure anything.  When I was released 4 days later, without any improvements, I was prescribed stronger drugs that left me like the walking dead.  I could not put words together, could not keep my balance, basically I could not focus. 
What is so frightening is that I continued with this doctor for 4 more months because I was afraid to give up on him.  I had given him almost a year of my life and all he did was make everything worse.  I am not saying that the medications he put me on were not common medications used, but I was never given any time to let them do the work they were supposed to. 

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 #11- Twilight

What power of a vampire or werewolf would you like to have to cope with Migraine or another Headache Disorder?

I must admit that I have not read the Twilight series and I have only watched one of the movies.  So with that disclaimer I am going to make an assumption that since vampires are dead they probably do not feel much or any pain.  With that being said, if I could choose a power of a vampire I would have to pick that one- NO PAIN!!!!!!  If I had no pain I could live life without any disruption.  I would not have to battle each day to do simple tasks.  I would not have to delay my fun for a day that the attacks do not control me.  And I could WORK!!!!  YES, I could gain back my independence.  And I would be able to breathe (a little easier).....

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 #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.

Saturday, June 8, 2013

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.

Friday, June 7, 2013

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.

Thursday, June 6, 2013

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.