You might be a migranuer if

You might be a migraneur if. . .
You have your neurolgists's number on speed dial
-You are the reason he can send his son to private school
-You doctor's nurse has memorized your pharmacy phone number.
-You have ever had med students drop by when they heard the words "weird case, room Five."
-There is a room in the infirmary that is considered "yours'.
-You wear sunglasses all the time, even at night or inside.
-You were nicknamed "Advil" in your high school year book.
-You have ever dictated a letter to your professor to explain that you have temporarily forgotten the english language.
-Your friends have ever dragged you kicking and screaming to the ER.
-You have ever wanted to punch people when they ask if you have tried excedrin/acupuncture/ strange herbs.
-Your friend has ever begged the ER doctor to give you pain meds.
-You have been a willing guinea pig for a device that controls pain.
-You have had more head CTs than you can count.
You would sear that one dr has ever ordered a CT to see what a stimulator looks like.
You refuse to wear white because it gives you "the death look."
You view distraction as a reasonable way to control pain.
You have ever justified buying something with the logic that it is cheaper than an ER visit or the pharmacy.
You write lists like this.

Feel free to add to the list.

About this Blogs Title

Some of you may have wondered about the title of this blog- falling through pain. The truth is that it is one of the best ways that I can describe living with Neurocardiogenic Syncope and New Daily Persistent Headache and how they impact my every day life.

New Daily Persitent Headache
I got my first migraine at the age of 12, but they did not become chronic until age 17. New Daily Persistent Headache occurs when a headache develops spontaneously and is unremitting. One of the key indicators is that most people remember where they were and what they were doing when the headache began. It is also extremely refractory, in that it does not respond to many forms of medication used to treat other headaches. NDPH can resolve in a few months or can last for years. In my case, the headache began at age 17 and is still there 13 years later. I am now thirty. I have seen numerous doctors and specialists-some helped, some did not. I do have an occipital nerve stimulator implanted and this greatly increases my quality of life. It works by sending a false message to the nerve, thereby intercepting the pain signal. It does not take all of the pain away, but it does allow medications to work. I have had two periods of remission, each lasting about 9 months.
If you want to know more about NDPH- here are some good articles:
http://www.healthcentral.com/migraine/types-of-headaches-41643-5.html
http://www.headaches.org/education/Headache_Topic_Sheets/New_Daily_Persistent_Headache

NeuroCardiogenic Syncope/ Postural Orthostatic Tachycardia Syndrome

In addition to New daily Peristent Headache, I also have Neurocardiogenic Syncope, a form of dysautonomia. This began about 3 years ago after a bad bout with the flu. I recovered from the flu, but began to faint constantly- at first, only a few times a week, then once or twice a day, and finally multiple times a day- anywhere from 1-12 times on a given day,
NeuroCardiogenic Syncope occurs due to a "disconnect" in the brain. In a normal individual, blood pressure rises upon standing. In patients with Neurocardiogenic Syncope, the heart does not get the message to raise the blood pressure when needed, as a result, the heart rate increases and blood pressure drops. In order to protect the brain, you faint in order to re-establish blood flow to the brain. The symptoms resolve quickly. There is not a great deal known about this disease, but advances are being made all the time. again, I have seen numerous doctors- cardiologists, neurologists etc. The one thing that has helped most has been C-PAP at night.
Here are some good articles on NCS
http://www.ndrf.org/ParoxymalAutonomicSyncope.htm
http://www.dinet.org/NCS/ncs.htm

About Me, and my life with these disorders
I am 3O years old and live in a medium sized city in the Southeastern United states. Despite these disorders, I was able to finish high school on time, go to the college of my choice (with a disability qualification}, and begin work on a Masters in Education. My studies were rudely interrupted by NeuroCardiogenic Syncope in 2OO8. These disorders have taken a great deal from me- my chosen career, some of my independence, and a good portion of life in general. Despite this, I am determined to live well. I have incredible friends, a supportive family (for the most part}, and several hobbies. I enjoy talking to friends, reading, spending too much time on the Internet, writing, going to the beach, and volunteer work.

Through all of this, I have learned never to give up, and to keep fighting, even when I don't want to fight anymore.

The title comes from the combination of falling and the constant pain of Headaches.

The lonely soldiers of Pain

In dealing with migraines for the past 13 years, I have met some remarkable people- comrades in this battle who fight daily as I do. Without my friends who understand, I am not sure what I would do. The following poem is dedicated to all those who are fighting this battle.

The lonely soldiers

Two are young, one is old, one is tired, and one is bold,

One is crying, one is searching, one is teaching, one is praying for peace,

They sit at a round table sharing war stories,

They are comrades fighting a silent, deadly, and invisible foe.

They did not suffer for a country, king, honor, or valor.

There are no uniforms, medals of war do not bedeck their coats.

No ceremony is held here, a look is all it needs.

For these comrades fight an enemy the world doesn’t see-

For they are the soldiers of pain.

Here, they gather, sharing their simple burden among each other,

Eyes and voices the only clue to others that something here is strange.

There is a tall man speaking of surgery and a certain day years ago, etched into his mind, and in that of the world. l

You would never see the truth in him, but you will love him.

In searching for a cure, he found a life, and sits with us again,

Refusing to give up the fight, hoping his son will learn from his will and might.

Beside him, a young blond sits smiling at him.

She is thinking, tired, yet hoping the next step will be better than the last.

If you did not know, or listen, you would not know how weary of pain she is,

Tears fall for a moment, until it is dried by the  soldier next to her.

Beside her, sits another young lady,

She fights bravely, shouldering a burden that only these people understand.

She grasps a mandala like gold, praying for peace,

You would not recognize this soldier;

Dark glasses, and IV scars  mark her,

the only signs that her body is, once more  betraying her.

Next her, another fights the battle visibly, though few understand why she cannot sit,

Why she cannot wait, and why she still fights.

But she is here, braver than the bravest warrior,

Fighting for new life.

Finally, the old man speaks,

Imparting the wisdom of age, encouraging others to fight,

Like the drummer, he sets the marching tune,

Like Henry at Agincourt, he exhorts others to be brave and to fight,

And then realizes that everyone is fighting, and with strength will fight again.

Their enemy is not a country or a king or terrorist,

It is pain- dark, deep, horrible, terrifying pain.

“Pain doesn’t kill” a doctor says, and together they dispute it-

As mankind’s worst ill takes away youth, beauty, life and strength.

The dark enemy moves quietly, invisibly,

In a way that only these can see,

Yet still they fight.

At this round table, there are no legends,

No Arthur blazing in and leading the fight,

No glorious cause, no Merlin and no castle.

Here the only quest is for relief, for normalcy, and for help.

Here they sit- young, old, true and bold

One is a banker, one a builder, one a jester, one a minstrel, and one is a teacher.

They silently join hands,

Pick up their swords again, and leave, whistling into the breech of pain. 

The hidden war

I lie here silently, though I am screaming in pain

I am somewhere between life and death,

The secret world that few men know.

My family doesn’t know I live here,

A few friends do, those who share this terrible burden

Those comrades who fight against the invisible enemy with me

Some days I long to give up my sword, give up the battle, and find peace,

But I know I can’t.

I have to keep fighting.

I fight with old weapons- opium, sedatives, and the like

Though man has accomplished a great deal, we still fight pain like our ancestors did.

And so I fight with new weapons too- weapons forged of wire, and metal and implanted in my skull.

I fight with friends, and with enemies, and with friends who become enemies

The stalwart and true physicians fight with me,

While other turn their backs telling me that “nothing can be done”, or “it is imaginary” or even tell me that the medicines that fight the pain shouldn’t be allowed for me.

I hear the same from friend and family- the terrible voices whispering to me that “I will not get well,” and that “the medicine is bad” and these whispers cause despair.

How can I live in this dichotomy?

What is the balance between medicine and poison?

And please, if you know, tell me what to do.

Yet, it is the still small voice telling me what is right for me-

The voice tells me to keep fighting, to find a way for me- and that this may not be the way of others, but I must walk my own.

And that still small voice comes from other fighters of pain, from true friends, and bonds forged only in combat.

And so I fight with the oldest of weapons-prayer, and I cling to the cross that conquered death, and suddenly I realize that the still, small voice comes through the ages, and He urges me on, giving me strength and will, taking away some of the pain, some of the torture and telling me that I am precious and young, and a warrior.

And that, one day, I will be free of the pain and rise, triumphant to life here or life above, free from pain and hell, shining with life, though I may be scarred, I will live.

Soldiers of pain

Dealing wih chronic pain, is, in many ways like fighting a war with your own body. Sometimes you win the battle and sometimes you lose. Here are two poems on the subject.

I am a battlefield and inside me a war rages

It is the war between migraine and dysautonomia

It the war between light and dark, life and death,

The scars cannot be seen- they are hills, divots, and balls in the field.

One day the speech is taken and I fight to talk,

Language and reading go next, as I struggle to read the alphabet.

Pain forces me down and there are days I long to surrender to the diseases within me.

However, I must fight, no matter the pain, or the cost which is a shell,

I must fight to live and fight to win.

I shall not lie on this field, but I shall fight-

With medicine, doctors, devices, and myself.

I will win, for I have heard that there is a place,

Far beyond the sky where there is no pain,

Where battles do not rage,

Where bodies are clean and whole,

And there I shall rest, green, fertile, and loved,

The meadow that shows no sign of battle- there shall I rest and be free

The Pain Market

I am here once more,

At the crossroads- searching for answers to a question few understand

I enter the gates of the market.

Physicians there tout their cures

Preventatives, such as,  topamax, Pamelor, Corgard shine brightly at the booths, their colors displayed as candy.

The ER doctors tout IV DHE, Depakan, Benedryl, Phenergan, and toradol, but for the headache sufferer there is still no relief.

No Narcotics we are told- you will get addicted and so we suffer in silence forcing every nerve until we get relief.

The naturopath touts ginger, ginseng, and St.. johns wort and B complex- the orange setting off the yellow ginger in a colorful rainbow of hope.

Then the pain clinics line us up for boot camp attempting to give us the tools to cope with pain on out own. And again, we force our heart nerve and sinew to serve our turn through hell again.

The last resorts are in a small booth at the back- few have ventured this far into the carnival.

Under a bright red awning, there is a table scattered with narcotics- the doctors rarely come here- only for the worst cases and one prays that this will make it stop.

On the next table a dizzying array of mechanical supplies is displayed- stimulators and pain pumps, the last recourse of the desperate and we cling to the only things we have left in this world- faith and each other.

There is a tent as white as snow, bidding all to enter- inside is a quiet sanctuary, an altar, a chalice, holy bread and wine, the chism to bless and heal us. In this sanctuary, we finally can rest for a while. Above the alter, in bright letters, there is a window showing Christ’s ascension and the final words to the gospel of Matthew- “Lo, I am with you always, even unto the ending of the world.” And slowly, one feels refreshed, restored and we know we will live to fight another battle.      

Could you Do it?

Could you do it?

You stand in judgment of us, telling us that only if we were

Stronger, braver, spoke with doctors, took vitamins, medicines, or simply rested, if we did this, then I would be well.

Could you do it? I want to yell.

Could you fight through pain and hell,

 knowing that the battle will never end, the disease may be a lifelong friend

Knowing the looks you will get from others, knowing you will have to justify your actions to many.

 Could you take the labels of “stress”, “drug seeker”, “lazy” and “weak,” and not believe them?

Could you calmly watch as doctors push medicine that has nearly taken your life, burns yours veins until there are none left, accept the scars and pray that others know they came honestly?

Could you take the meds that damage your liver, depress you, force you into both silence and screams, that hurt you and endure the pain in your friends eyes as they look upon the battle?

Could you wait patiently for days and weeks and months for doctors to figure out what you already know?

Could you hope and pray and live another day, without betraying your secret to others?

Could you smile and say that you are fine?

Could you appear so to the rest of the world?

Can you smile through an 8, and put up a front to 10, all the while listening to judgements of so-called physicians and friends?

Could you watch your sister, husband, friend, child go through this life like this?

If you can, you will be tried, tested, you will walk through fire and through hell.

In the end, friend, you will win this battle- and one day, free from pain, you shall rise, your battle won and begin and live again. 

Somewhere. . .

Here is another poem on migraine. Enjoy!

Somewhere there is a child on a field of green who feels the pain in her head

And doesn’t know that her entire life has changed in an instant.

Somewhere there is a teenager scared in an Emergency Room who has lost the ability to speak and is scared because it this disease has taken what she loves most. Language,

Somewhere a mother receives a call telling her that he 18 year old has had a stroke,

Her eyes glow wide with relief, when she finds out it is simply the disease.

Somewhere there is a teenager nicknamed “Advil” in the yearbook,

With the strength to smile and wear it as a badge of honor given by friends

Somewhere a student is explaining to a professor that this disease has the ability to take her away from class and strand her in a dark room

In a crowded dorm room, the same student is dictating a note to a friend telling them that once again the disease has robbed her of language

Somewhere her friends are taking her to the ER, kicking and screaming, willing to fight for her, a battle she cannot fight herself

Somewhere she feels the touch of God in a cold chapel and knows what she must do and so she goes forth, denying herself, taking her cross and following the one who called her.

She feels the defeat of losing the fight, of losing a job, and crying for it.

Still, the letter comes and she follows to seminary.

Somewhere she meets a Marine who will guide her and four others, the man who will draw a military plan, and walk through fire to make sure she is ok.

In a hospital room, she stuggles to breathe as the medicine drips too quickly into her veins and the marine sits by her side and knows she will triumph.

A professor walks in and asks the most terrifying question she has ever heard “How did it feel to be that close to death?” She answers with a jibe and lives to tell the tale.

She sits on the couch crying because she can’t spend time with her mother or her friends.

She dreams of love, life, and fights for both, she wants to help anyone she can and she does.

Somewhere a phone rings and a friend will talk her down through hell, and tell her that she is worthy and wonderful, though she does not know it herself.

Somewhere a mother sits on a couch watching her children play quietly because Mom hurts, but they love her and will learn to live with her strength and power and interllect.

And the child on the field sits in the bleachers hoping the pain will leave her and her mother tells her she will be ok.