Migraine + Cluster Complicates Treatment

Migraine + Cluster Complicates Treatment

The Art of Migraine and Headache Management

The National Headache Foundation has designated June as Migraine and Headache Awareness Month.

This year’s theme is “The Art of Migraine and Headache Management.”

Since its inception in 2012, a social media and blogging challenge is issued to encourage those affected by headache disorders to share facts and dispel stigma. There is a new fact each day, along with a prompt for bloggers.

Today’s Prompt:Discuss the challenges you have experienced with #Migraine and other #Headache disorders.”


I’ve had Migraine since I was a small child. Then just before my 30th birthday, I experienced a headache unlike any Migraine attack. The pain was beyond unbearable. My doctor and I were at a complete loss. The searing agony would not respond to any medication we tried. After a few months, we began to put the pieces together. With the help of a good neurologist, this monster finally had a name—Cluster Headache. What a benign name for such a horrific disease!

The biggest personal challenge has been finding a doctor who understood both conditions well enough to be an effective treatment partner. I found plenty of skilled neurologists who understood migraine and had a great attitude toward working with patients. Yet, when I asked about cluster headache, the conversation often sounded like this:

Doctor: “Do you have oxygen?”

Me: “Yes, but…”

Doctor: “Okay, that’s good.”

Me: “But I’d like to have fewer attacks.”

Doctor: “When are your cycles?”

Me: “Um, I’m always in cycle. I don’t get breaks. I’m chronic.”

Doctor: “Oh, I’m afraid I can’t help you. Now let’s talk about those migraines.”

I searched for years trying to find anyone who had any knowledge on treating someone with both chronic migraine and chronic cluster headache. Occasionally I’d find one who had elementary knowledge, but no one with whom I could discuss any of the new research or recent advances. I got tired of being offered outdated, failed treatments when I knew that better options were available. I was desperate to find a doctor who could be an equal partner, much less one whose knowledge surpassed my own. After 17 years of life with chronic cluster headache and chronic migraine, I’ve finally found a true partner who understands the complicated issues of treating both.

17 Years in Cluster Headache Hell

17 Years in Cluster Headache Hell

Happy anniversary to me!

October 17, 1999 marks the day my life changed forever.

I’d been fighting a stubborn migraine attack for over 24 hours and it wouldn’t let up. I was tired, but couldn’t sleep.

WHAM!

A lightning strike to my head sent me reeling to my knees. Something had exploded inside and set my whole head ablaze with searing flames of agonizing torture.

You probably think I’m exaggerating.

Honestly, those words don’t do it justice. It was much, much worse.

No matter what I did, how many pain pills I took, or how desperately I tried to relax and sleep it off, the fire would not go out. I didn’t wait long to call for help, yet those few minutes felt like an eternity. As I asked my then 7 year old daughter to call 911, I was convinced this nightmare was going to kill me. We were the only ones in the house and I did not want her to watch me die. It was bad enough she had to watch me beat my head against a cast iron claw-foot tub while we waited for paramedics to arrive.

My husband arrived home as I was being carried to the ambulance. He quickly made arrangements for child care so he could meet me at the ER. Due to the extreme pain, the doctor immediately ordered a CT scan to rule out catastrophic brain injury. It was a frustrating disappointment to hear that the scan was completely normal. How in the world could such excruciating pain leave absolutely no trace evidence? I was out of my mind in agony, screaming, cursing, and thrashing about. This was no ordinary migraine.

The nightmare kept coming back.

I continued to get these attacks at least twice a week for the next 6 months. My doctor prescribed powerful pain killers that did absolutely nothing to stop the pain. Assuming they were migraine attacks, we tried one preventive after another, hoping something would work.

Desperate for relief, I went searching online for answers. It took some time, but I finally found the answer…a name for this living hell…CLUSTER HEADACHES. My doctor was such a good sport about my self-diagnosis — accepting it without question and even calling in an order for oxygen tanks. It took the oxygen supply company a few trys to get it right, but I was relentless at insisting on a HIGH FLOW regulator and NON-REBREATHER mask. Miracle of all miracles, the O2 stopped the attacks COLD.

But they still kept coming back.

That’s when my doctor gently got in my face. “Tammy,” he quietly suggested, “I think you need to see a neurologist. These aren’t ordinary migraines and I’m not sure how to help you anymore.” Thank God for doctors with humility!

That’s when I met my current neurologist. I didn’t want him to get defensive, so I didn’t tell him that I already knew my diagnosis.  Instead, I simply answered his questions. When he asked, “Where does it hurt?” I shoved the palm of my hand into my right eye.  Instantly he replied, “I think you have cluster headaches. They’re really rare, especially in women, but there really is no other explanation. We need to start you on verapamil and some oxygen.” The new medicine made the attacks less painful and less frequent. While the attacks never really went away, they certainly gotten easier to deal with. Even with the right treatment, some attacks can still leave me screaming and begging for death.

I’ve survived 17 years in hell.

It’s hard to believe that I’ve been living with cluster headaches this long. When I explain this disease to strangers, they respond with shock and horror, often wondering aloud how I can possibly cope with such terrible pain.

Most of the time I smile, shrug my shoulders, and say, “What choice do I have?

Dear medical oxygen suppliers…

Dear medical oxygen suppliers…

People who live with cluster headache are your patients whether you know it or not. The fact that most of you know very little about our disease is appalling and disheartening. By the time we get to you, we have already been through hell just trying to get a proper diagnosis and a valid prescription for oxygen. It takes an average of eight years just to get to this point. By the time we get to you, we’re exhausted and desperate. We need your compassion and understanding. Instead we’ve often been met with ignorance, stigma, and a mountain of inflexible red tape that isn’t relevant to our illness. Your outdated policies have made life unreasonably difficult for people with cluster headache and it needs to stop.

You don’t seem to understand our urgency. If you’re willing, it will only take a few moments to enlighten you.

Our lives really are on the line.

They don’t call it “suicide headache” for nothing. You will be hard-pressed to find a single person living with cluster headache who hasn’t seriously considered suicide at one point or another. The pain is so excruciating that it defies words. Your delays because of bureaucratic nonsense just might cost one of us our lives.

Oxygen is our lifeline.

We don’t need it to breathe, but we do need it to live. Using oxygen allows us to abort attacks within a few minutes. Without it, many will endure hours of unimaginable torture. Because attacks frequently occur in the middle of the night, our sleep is disrupted, too. Oxygen allows us to quickly stop the attack and get more hours of sorely-needed shut eye.

We will do whatever it takes.

If we sound desperate, that’s because we are. Because it takes so very long to get diagnosed, we’ve been suffering for years. There’s a good chance we’ve lost everything already and now we are hanging on by a thin, fraying thread of hope. You can strengthen or destroy our hope in seconds.

Our need is simple.

We need assorted sizes of oxygen tanks, a good quality non-rebreather mask, several lengths of tubing, a regulator that will deliver at least 15 lpm, and a safe way to store and transport the tanks. Some of us will need more tanks than others, depending on our attack frequency, but the basic setup is the same.

Create a fast, efficient fulfillment process.

Know the basic set-up requirements for cluster headache and have it ready to go quickly. Streamline your process so that patients in an active cycle are fast-tracked through your system. Make it part of your business model to deliver oxygen to cluster headache patients THE SAME DAY the prescription is received.

We all need:

  • Non-rebreather mask
  • Several yards of tubing
  • Regulator that delivers up to 15 lpm
  • Oxygen tanks
  • Safe storage and transport methods
  • Instructions for optimal use specific to cluster headache

 

It may not be covered by insurance.

That doesn’t mean that it isn’t medically necessary. If we have a valid prescription, then what does it matter who pays the bill? I’ve never understood why so many of you refuse to accept our cash, check, or credit card. One would think that you’re in business to make money. Turning away paying customers with cash in hand seems like a really bad way to make a profit.

Monthly rental plans don’t work for all of us.

Most of us have episodic cluster headache. Our attack cycles can last anywhere from 1 week to 3-4 months. When it’s over, we have no need for oxygen until the next cycle. The time between cycles could be a month, a year, or even decades. To require us to agree to a monthly rental plan that continues indefinitely whether we need it or not is a waste of your time and our money.

Sure, a monthly plan with scheduled pick-ups and deliveries makes a lot of sense for those of us with the chronic form of this disease. But for the vast majority of us, renting by the tank is a more affordable and reasonable solution. That way we pay for what we need, when we need it. Give us the option to purchase our own regulator, mask, tubing, and cart. That allows us to quickly and efficiently rent just the tanks we need during an active cycle. Please, give us more options instead of forcing us to pay for something we don’t necessarily need to use all of the time.

Be open to short-term customers.

Traveling by air with cluster headache is challenging. Compressed oxygen tanks are not permitted aboard planes and oxygen concentrators don’t deliver a high enough flow rate. If we manage to get through the flight itself, we still need access to oxygen tanks at our destination. This often means renting tanks from a new supplier. Because many of you have a subscription-based business model, the idea of renting a handful of tanks to a short-term patient is foreign. As long as we have a valid prescription, why do you care? Please help us survive business trips and enjoy our vacations by offering short-term rentals.

We know more than you.

Face it – we know more about our condition and need for oxygen than you do. We probably know more about it than our doctor, too. That’s what happens with rare diseases. Accept that fact and don’t argue with an experienced cluster headache patient about the quantity and size of tanks, flow rate, duration, mask type, or anything else. We really do know what we are doing.

New patients might not know how to use oxygen for best results. Their best source of information won’t be you or their doctor. Patient support groups are the best source. If you haven’t already partnered with a patient support group, then you need to do so right away.

If you’d like to know more about how you can best meet the needs of cluster headache patients, please contact me directly or visit The Cluster Headache Support Group.

Yours truly,

A 16-year veteran of cluster headache


Learn more…

Research Series: Oxygen
Cluster Attack: The Way it Really Happens
Putting Profits Before Patients

Burning from the inside out

Burning from the inside out

“I survived because the fire inside me burned brighter than the fire around me.” ~ Joshua Graham

The greater Kansas City area has an estimated population of 2 million and spans 15 counties in two states, Kansas and Missouri. It has been my home for most of my life. I have a disease so rare that in 16 years, I’ve only met one other person here who shares my diagnosis. Statistics say there are at least 998 more in town. The patients I do know who share this disease, I met on social media. Every one of them thought they were alone, too.

I have Cluster Headaches.

You may have seen YouTube videos of patients enduring an attack or heard that Daniel Radcliffe has been diagnosed with them. You may have heard that they are also called “Suicide Headaches” and that the pain of an attack is one of the worst things a person can experience. Unless you live with it too, that’s probably the limit of your experience with this devastating disease.

Don’t tell me about your migraine, please.

I’ve had migraine disease my whole life. The worst migraine attack pales in comparison to a cluster headache attack. Believe me, I know the difference. I would rather face down my worst migraine attack during natural childbirth while having my leg amputated without anesthesia every day for the rest of my life than have ONE. MORE. #@!%& cluster attack.

This beast changes you.

You toughen up real quick. Because of the unique nature of cluster headaches, patients are physically unable to lie down, sit still, take a nap, or remain calm. I scream, curse, pace, rock, pull my hair, shove my fist in my eye socket. Heaven help the poor soul who gets between me and my only relief — a tank of compressed oxygen attached to a high-flow regulator and mask. It is impossible to be a passive victim of cluster headache. The disease simply will not permit it.

I tried once to explain to my husband how unique cluster headache patients are…

“Headbangers are the “Patriot Guard” of headache medicine — rough around the edges with hearts as big as Texas.”

During the 2013 Migraine and Headache Awareness Month, I described them like this…

“Cluster attacks are best fought in bare knuckles, hand-to-hand combat. This is brutal warfare. Anything “high tech” would trivialize it. When I think about fighting a cluster attack, scenes from Platoon, Rocky, Predator, and Mortal Kombat flash through my mind. Fighting cluster headaches is ugly, bloody, and violent. No weapon can adequately fight like the spirit of someone with nothing to lose.”

We may be small in number, but we are mighty. 

There’s just no other choice. Because of the unique characteristics of our disease, we tend to be more actively involved in our treatment. Migraine patients joke that they know more about their disease than their doctors (which we often do), but clusterheads really do. Most doctors will never meet a cluster headache patient in their entire careers. I’ve had doctors challenge me by asking how I know I have cluster headaches. When I list off the trademark symptoms in rapid-fire succession, they’re suddenly very quiet. It helps that I was diagnosed by a neurologist who also has cluster headaches.

o2ptimaskDuring a brief hospital stay for intractable cluster headaches in 2013, I was the talk of the nursing station. They’d only heard about cluster headache in school, so I was quite the attraction. One nurse kept a wide berth when I frantically shoved my own tubing into the wall-mounted oxygen port and jacked the flow rate up to the max. Later she admitted she’d never seen anyone have a cluster attack and decided to keep out of my way because I seemed to know what I was doing.

Damn straight I did.

Rule our headache disorder? We’ve got no other choice.

Want to know more? Stop in for a visit with me and 6,000+ of my closest headbanging friends at The Cluster Headache Support Group or check out our information at ClusterHeadacheInfo.org.

I promise we’ll be gentle.

What’s under my hat?

What’s under my hat?

Today is International Cluster Headache Awareness Day.

The European Headache Alliance has launched an Under the Hat campaign to create awareness of cluster headache, migraine, and other headache disorders. As part of this campaign, they have encouraged patients to post photos of themselves wearing a hat along with a brief description of what it’s like to live with a headache disorder. Rather than offer a clinical explanation, I’d like to take this time to tell you a little about life with cluster headaches.

If you’re not familiar with cluster headache, please visit the links below to learn more.

The day my life changed forever

underthehatSunday, October 16, 1999 is a day my family and I will never forget. That is the day that our lives changed forever. I’d been stuck in bed all weekend with a raging migraine that would not quit. This wasn’t an uncommon occurrence, so no one thought much about it. Sunday morning the house was quiet and dark. My husband and 3 year old son had left for a few hours while our 7 year old daughter stayed to play while I rested. I had been drifting in and out of sleep for a few hours, patiently waiting for the migraine to finally disappear when all hell broke loose.

The searing pain tore through my right eye as if I’d been struck by lightning. Instinctively I shoved my fist into my eye socket, rolled into a fetal position, and desperately tried to muffle that primal scream pouring from my lips.

Frightened, my daughter ran in, “Mommy, are you okay?”

Not wanting to alarm her, I lied, “I’m okay. The migraine is just getting bad again. I’ll be all right in a bit.”

But I wasn’t all right. A thousand burning, white-hot knives slashed through my eye, forehead, and temple. Desperately I tried to find a comfortable position in which to relax until the pain subsided. After all, that’s what I had learned to do for migraine — relax, stay calm, and the pain will ease up. Only this time, nothing I did made any difference. I let go of my migraine training and followed my instincts. I paced and rocked, pulled my hair, beat my head against the wall, and swore a thousand curses under my breath. Ever mindful of the little girl playing across the hall, I stifled the urge to wail and scream. Slowly I made my way to the bathroom where I discovered the cool edge of our cast iron claw foot tub. It provided a bit of relief as the stabs began to ebb and flow.

Just when I thought the nightmare had ended, it struck again with a vengeance. I remember rolling around on the bathroom floor, moaning in pain, thinking that this might be the end. My head felt as if it had been split open by an axe while tiny demons poured battery acid in the open wound.

“I cannot die in front of my daughter,” I reasoned. It was this thought that prompted me to call for her.

“Yes, mommy,” she whispered.

I uttered those dreaded words, “Mommy needs you to call 911. I need help. Do you remember what to do?”

“I think so,” she walked away to grab the phone. I heard her speaking to the operator, “My mommy needs help. Her head hurts really bad,” she explained and then carefully gave our address. I could hear her still talking to the operator as the paramedics arrived.

I was so delirious from the pain that I could not safely walk down the stairs. My husband arrived home to see an ambulance in the driveway and me being carried out of the house on a stretcher. The next afternoon I woke up, groggy and disoriented without any memory of the ER.

This same routine went on for another eight months. At least once a week (and usually more often), I would end up in the ER with pain so intense that I could not lie still or stay calm. The doctors began to think I was a lying drug addict because they expected me to behave as though I had a migraine (lie still, be quiet, lights off, ice pack on my head). I did get migraines in the aftermath of each attack. But these attacks were unlike any migraine I had ever experienced.

My doctor was at a loss, too. That’s when he suggested I see a neurologist. Within a few minutes, the neurologist had diagnosed me with chronic cluster headaches. He set me up with oxygen tanks and a Verapamil taper to slow them down. Those metal tanks were my lifeline. I stored a few under my desk at work and several more in the car. The rest were split between a corner in the living room and upstairs in the master bedroom.

Fast-forward 16 years

Not much had changed. Verapamil still kept the attacks down to a dull roar and oxygen stopped the bad ones in 20 minutes or less. My neurologist had just referred me for Botox injections to treat chronic migraine. We didn’t expect the treatment to impact the cluster attacks, but thought it was still worth a try to put a dent in the migraine attacks.

Within a few weeks after that first round of injections, I realized that I hadn’t needed to use my oxygen for a while so I checked my headache diary. It had been almost two weeks since my last cluster attack. I tried not to get too excited as there had been long breaks before. Still, I was hopeful.

Remission!

My next cluster attack occurred 6 months after that first injection. The cycle was mild and brief — just one week. I am now officially diagnosed with episodic cluster headache. I have cycles for about one week every 3-4 months. Botox has been a miracle. Don’t misunderstand — the attacks I still get are horrific and without oxygen I’d be a complete psychotic mess. Yet thanks to Botox, I only have to face this demon a few times a year instead of several times a week.

999470_1252254168136936_1739138972986706158_nWant to know more?

Finally approved for Botox
Hopefully skeptical about Botox
Cautiously optimistic about Botox
Finally, some good news for a change
Botox in pictures
Cluster Headaches Explained
What’s under the hat?
European Headache Alliance
Under the hat
OUCH, UK
Cluster Headache Info

 

Putting profits before patients

Putting profits before patients

Ask any cluster headache patient and they will tell you that health insurance companies rarely cover the cost of oxygen. It is baffling why such an inexpensive, safe, effective treatment is denied. Most of us have learned to work around this issue by paying for tank rentals out-of-pocket or making arrangements to use welder’s oxygen. I’ve never needed to source welder’s oxygen because I’ve always had access to affordable tank rentals from understanding DMEs. That all changed last week.

Backstory

A few years ago I had to find a new oxygen supplier because of a move. At the time, there was only one preferred provider on my health insurance plan. That provider was Apria Health Care. Initially it seemed like a good move. I had chronic cluster headaches and attacks were hitting 3-5 times every week. Apria delivered 6 “E” tanks and my insurance covered the cost. A year later, my insurance provider changed to a Medicare Advantage plan with Humana, which does not cover oxygen for cluster headaches. I had emptied 5 of the 6 tanks, but didn’t bother to reorder. In early 2015, Botox treatment put me into a 7-month remission followed by brief cycles just 3 times a year. I really didn’t need that much oxygen anymore. Based on previous experience, I assumed I would be able to rent tanks when needed without any problems.

Fast-forward to October

When we moved into our new house last October, I called Apria to request a pick-up of the used tanks and to change my address. Because my cycles are brief, I do not require a large quantity of oxygen. That last “E” tank  got me through 3 attacks on Veteran’s Day. I had just enough oxygen left in the tank to treat one more attack.

Last week

Knowing that the next cycle would be coming soon, I requested a new delivery last Tuesday. At the time of my request, I was informed that they had no record of me as an oxygen patient. I assumed this was a clerical mistake and asked my neurologist to contact them with a new prescription. As luck would have it, my next cycle hit before the tanks could be delivered. I used the last bit of oxygen and prayed the next round would wait until new tanks arrived the next day.

Still waiting

It was a Friday morning when I called Apria to find out when the tanks were scheduled to arrive. That is when I was informed they were waiting on my doctor to fax them the results of my oxygen saturation test. The next cluster attack was beginning to ramp up, so I was already on edge, impatient, and beginning to panic. I needed that oxygen right away! I argued with the person on the other end of the line, demanding to know why in the world O2 sats were needed for a neurological condition that had absolutely nothing to do with lung function. All I got in response was a terse, “That’s what your insurance requires.”

Sharp stabs seared through my right eye as I fastened an ice pack tightly in place with an ace bandage. I could feel the adrenaline coursing through my body. Involuntarily, I began pacing the floor and taking quick, shallow breaths. Desperate, I dialed the number of my care coordinator at Humana hoping she could help expedite the oxygen delivery. My bad luck turned worse when I learned that she was out of the office. All attempts to reach anyone else who might be able to help resulted in being transferred from one extension to another until the call was eventually dropped.

Burning tears were streaming down my face as I desperately dialed Apria once again, hoping to speak to someone with just an ounce of sanity and compassion. By this time the pain was so intense that I had lost all ability to remain calm, rational, and diplomatic. The call was an epic failure. It was time to get my husband involved. The minute he picked up the call, he could hear the panic in my voice and knew I was out of my mind in pain. “I’m on my way,” he reassured me.

In the minutes after that final call, I could feel the beast loosening its grip on my head. Taking in a deep breath, I realized the attack was beginning to subside. My head now hurt from the migraine that always followed a cluster attack, but at least I could think a bit clearer. I mentally assessed the situation.

  • No one at Humana could help.
  • My neurologist was out of the office for the weekend.
  • I had one more option. Maybe my primary care doctor would help. If I could find another DME who was more sympathetic to cluster headache patients, perhaps he would be willing to order a small amount of O2 to get me by until my neurologist was back in the office on Monday. I called the office and spoke to his nurse.

Rescued!

By the time my husband arrived home he was able to take over. He grilled the new DME to verify there would be no problems with them accepting payment, then made arrangements with my doctor to have a prescription faxed to them. Within the hour he was able to pick up 2 full “E” tanks for a meager $24.

Fallout

It’s now Monday morning. I’ve been on the phone with Humana, Apria, and my neurologist. Humana says that as a Medicare Advantage plan, they do not cover O2 for cluster headaches. I knew that and wasn’t surprised by their answer. That’s what I’d been telling everyone at Apria all along. Apria says they made a mistake and that Humana does cover oxygen for cluster headaches, BUT…they never accept direct patient payments, AND…they rent their tanks for $100 per month. If by some miracle, Humana did agree to pay for the tanks, I’d still be out $20 every month PER TANK just to have the damn thing available “just in case”. Now why would I agree to that when I just paid a ONE-TIME $24 fee for TWO “E” tanks that I can keep as long as needed until they run out?

Fired due to incompetence and woeful lack of compassion.

Apria has made a business decision to put profits and bureaucratic “red tape” before patient care. This is unacceptable. Before I hung up, I told them their customer service SUCKS and that as a headache disorders patient advocate, I’d make sure every cluster headache patient I knew would learn how TERRIBLE they are. I promised to do everything in my power to make sure they never got another DIME from any headache disorders patient. There’s only one way to teach these money-grubbing bastards a lesson. BOYCOTT Apria, file complaints with your insurance company, and tell everyone you know that they are NOT cluster headache friendly.

Cluster headache-friendly DMEs

On the other hand, I’ve discovered two marvelous DMEs who understand cluster headache patients and will bend over backward to accommodate our needs. If you are in northeast Kansas and need oxygen for cluster headaches, please do business with LinCare, Inc. or Criticare Home Health Services, Inc. Not only will they offer you affordable O2 tank rentals, but they will outfit you with regulators, masks, carts, and anything else you need AND teach you how to use the equipment for maximum benefit.

Cluster Headache – The Most Painful Type of Headache One Can Endure

Cluster Headache – The Most Painful Type of Headache One Can Endure

June is National Migraine and Headache Awareness Month. The global burden of headache is extremely large, putting headache among the top 10 causes of disability worldwide.

One particular headache, cluster headache, has been described as the most painful type of headache one can endure. It has been nicknamed by some sufferers as the “killer” or “suicide” headache.

While uncommon (the prevalence is about 10 per 100,000 in male patients, about 19 to 25 times less than the prevalence of migraine in men), cluster headache is a neurological disorder with excruciating pain that sometimes leads to suicidal thinking. It is easy to diagnose, but also easy to mislabel as a sinus headache.

Source: Cluster Headache – The Most Painful Type of Headache One Can Endure

Writing in the dark | MHAM Blogging Challenge

Writing in the dark | MHAM Blogging Challenge

Today’s prompt: How do you find hope on a dark day? Please write about any ways you have to find hope on a dark day.


Image courtesy of Chee Kong Teo at FreeImages.com. Modified with permission.
Image courtesy of FreeImages.com. Modified with permission.

When it feels like all is lost, like the light is gone forever, I write. Writing gives me a sense of hope and purpose.

Although I have no quotas and can’t get fired for not writing, there are still people who count on me to produce something of quality. The “likes”, “shares”, and “comments” add up. Each one is like a little candle that’s been lit in the darkness. Before long, the entire room is filled with light. Brain Storm and my features on Migraine.com really matter to people.

If I were to quit tomorrow, readers would notice. They would wonder what happened. Those readers are my silent, invisible family. You don’t quit on family. So I keep on writing.

Generating ideas is a breeze.

My husband says that he doesn’t know how I come up with ideas for so many articles. Frankly, generating ideas has never been a problem. I have 45 years worth of material on life with migraine alone. Thanks to a graduate education, researching clinical trials is simple and fast. If I really get stumped or bored, there’s a file cabinet full of ideas on mood disorders, anxiety disorders, trauma, marriage & family, child development, and multicultural issues.

Sometimes writing is an angry rant.

Stream of consciousness writing is an effective stress management tool. Sleep writing happens, too.  Sitting up in bed with my hands on the laptop keyboard, sometimes I doze off. Interesting things can happen. Most often the screen is filled with nonsense like “hhjkkkkkkkkkkkkkkkkkkkkkkj;aassssaaaaaaaaaaaaaakd” in the middle of an article draft.  It’s happened twice just while writing this post. That “may cause drowsiness” warning label on some medicine bottles really means it!

That’s went it’s time to turn up the music and get down to business.

Every page view, like, share, and comment are like surprise presents on Christmas morning. If no one ever read a single word, I would still be compelled to write. Knowing that what I write reaches those who need it makes those little flames of hope shine brighter.


The Migraine and Headache Awareness Month Blog Challenge
is organized by the American Headache and Migraine Association.


#MHAM, #MHAMBC, #migraine, #clusterheadache, #chronicmigraine

I don’t have to win | MHAM Blogging Challenge

I don’t have to win | MHAM Blogging Challenge
© Zorandim | Dreamstime.com - Woman Cheering In The Rape Field Photo
© Zorandim | Dreamstime.com – Woman Cheering In The Rape Field Photo

Today’s prompt: Watch Brian McKight’s performance of “Win” and share which of the lyrics you believe.

On my better days, I could sing this song with passion and really sell it, but I would be kidding myself. It’s exactly that sentiment that has gotten me in to so much trouble regarding Migraine. You see, I take it too far. That attitude is exactly what tempts me to ignore my limitations and vulnerabilities. When I think like that, trigger avoidance goes right out the window.

So my song really ought to go more like this…

See I promised myself that I’d never let me down…

Migraine will do that for me. Sometimes I think Migraine happens just to knock me off my high horse. Who am I kidding anyway? I don’t really want to let myself or anyone else down. Sooner or later it happens anyway. The trouble starts when I think I could make that promise in the first place. I’m a fighter. I like to win. Winning at the cost of my health is no longer acceptable.

Never let a ray of doubt slip in...

That’s not doubt, it’s the voice of reason telling me to slow down before it’s too late. There have been too many times that doubt would have been preferable to delusion. It isn’t doubt when you’re in denial.

There’s much too much at stake…

So I tell myself, “Don’t be foolish,” when tempted to push it more than I should. Sometimes putting on the brakes is better than ending up in the ditch. What’s at stake is quality of life. For too many years my dreams were over-sized and unrealistic. It took nearly losing my life to discover what really mattered.  I don’t have to win to get exactly what I need.

My once in a lifetime will be back again…

It comes around more than once, so don’t make it out to be such a big deal. It’s really rare to get only one chance. How many times have I lied to myself, saying I will push my limits, “just this once”? Over and over again I have paid for that excuse in migraine hours. It took me way too long to learn that lesson.

I’m gonna win…

Pushing beyond the limits of my Migraine brain will only end in tragedy even if I do manage to win. But I don’t have to win, place or show. I don’t even have to play the game.


The Migraine and Headache Awareness Month Blog Challenge
is organized by the American Headache and Migraine Association.


#MHAM, #MHAMBC, #migraine, #clusterheadache, #chronicmigraine