Expressing Gratitude for Migraine

Expressing Gratitude for Migraine

We all know how hard it it can be to live with migraine, cluster headache, and other headache disorders. There’s never a shortage of reasons to complain. We can go on and on for days lamenting our sad state of affairs. Scapegoats and villains are plentiful, too. Let’s face it, life with a headache disorder can really suck. it’s all too easy to get lost in the negativity, drama, and finger-pointing, and even self-blame.

But what if we changed our focus? Instead of counting all our bad breaks, we could count our blessings. It might be difficult at first — all change is. Some might resist. Change can feel like a threat to our way of living. Some may accuse us of ignoring the very real problems surrounding headache disorders. Yet true thankfulness doesn’t ignore hardship; it celebrates overcoming it. I’ve never been one to shy away from uncomfortable truths about stigma, barriers to quality health care access, the burden of side effects, or the woeful lack of research funding. All of these (and more!) are true. So how is it that I can stay so positive and hopeful in the face of such obstacles? In part, it’s because I choose to focus on gratitude.

So let’s kick off this season of thanksgiving with a really big THANK YOU to someone near and dear to my migraine heart. There are not enough words to express my gratitude for her tireless efforts to improve the lives of patients. Teri Robert was in this fight long before most of us even knew we had migraine. It was from Teri that I first heard those precious words, “Migraine is a disease.” What an eye-opening relief it was to finally have validation! Decades of questions about my sanity were erased in moments when I realized that migraine did not have a psychological cause. I wasn’t imagining any of it. Her words kick-started my long journey toward effective, safe management of both migraine and cluster headache. Without her, I would have never learned how to take control of my own health care. When fibromyalgia and osteoarthritis struck years later, I use those same principles to seek help and develop healthy coping strategies. Over the years we have become colleagues and I am now proud to call her one of my dearest friends. We all owe her a debt of gratitude for improving the lives of everyone living with migraine and headache disorders.

If you haven’t met Teri or aren’t familiar with her work, please follow these links to learn more. You will be glad you did!

Health Central | Help for Headaches | Putting our Heads Together | Facebook | Twitter

Each year on the 4th Thursday of November, US citizens celebrate a day of Thanksgiving. This tradition can be traced back to the the early days of colonization when a group of Pilgrims joined their Native American neighbors in a feast to celebrate and give thanks for their survival of a very harsh winter. Over 200 years later, that tradition has jumped into cyberspace and transformed into a social media tradition of thankful sharing each day in November. While traveling has set me back a few days, I’d like to join the tradition this year with a little twist. For the rest of November, please join me in giving thanks each day. I will be trying to post a brief “thank you” each day that will appear on Facebook or Twitter. Please, follow along and feel free to join in by sharing your own gratitude!

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?

Complex Migraine Is Not A Diagnosis!

Complex Migraine Is Not A Diagnosis!

When Denver Broncos coach, Gary Kubiak was hospitalized on Sunday, the doctors who treated him called it “Complex Migraine.”

They got it all wrong.

Such a diagnosis does not exist.

“Complex migraine” is a descriptive term that can mean absolutely anything. It is not a true diagnosis with specific symptom criteria. Look it up for yourself in the International Classification of Headache Disorders. It isn’t there.

Shame on those doctors for using such an ambiguous term!

As long as doctors continue to offer up ambiguous descriptive terms for what ails us, Migraine and other headache disorder will continue to be stigmatized and trivialized. Doctors have a responsibility to complete a proper differential diagnosis and to actually inform us about our condition using universally-established diagnostic criteria and labels. If it’s not in the ICHD-3, then it’s not a diagnosis; it’s a description.

Scientific research is not done using descriptions.

Treatments are not developed using descriptions.

Insurance reimbursement is not based on descriptions.

An accurate diagnosis is the foundation of good health care.

People living with Migraine are not stupid. We deserve to have all the relevant information about this disease. Our health care system is failing us because even our doctors don’t know enough to even use the proper terminology. Good health care starts with getting the right diagnosis. Without it, there can be no proper treatment. Without proper treatment, patient outcomes are not successful.

Doctors, get it right.

Patients, don’t accept a description for a diagnosis.

Read the ICHD-3 for yourself and if your doctor says you have “complex migraine” challenge it. Insist on a true diagnosis or prepare to find a new doctor. You deserve better.

Migraine Product Review: IceKap

Migraine Product Review: IceKap

The final product I chose to try was Ice Kap. When it comes to dealing with Cluster Headaches, no ice pack has ever felt better than the cold, tight compression of my Ice Kap. As a bonus, it is the only one that can also be warmed in the microwave. Given my return to chronic cluster headache status, it gets used a lot.

Advantages

Like the other wearable products, Ice Kap is easy to wear as you move about during the day. It is comfortable to sleep in, although not as stretchy as MigraCap. Long hair can be pulled through an opening in the top, too. Gel packs are flexible when frozen and can be removed to treat just one area. This is the only product I tried with a gel pack over the top of the head. With 5 removable gel packs, it truly does cover every square inch of my head. I can pull it down to cover my eyes, too.

Ice Kap does have some unique features not available with the other products I tried. 

  1. Gel packs can be safely heated in the microwave. When neck stiffness sets in, this is a definite plus.
  2. It has built-in Velcro straps to tighten it around the head. For cluster headache attacks, this feature is indispensable.
  3. Ice Kap comes in 4 sizes, so you will need to measure the circumference of your head before placing your order. If you prefer a looser fit, just order one size larger.

Disadvantages

Ice Kap is the most expensive product I have tried. The Deluxe 2.0 version retails for $69.99. Given the hundreds of dollars I’ve spent searching for just the right ice pack, I would have been money ahead to simply purchase an Ice Kap. It meets my needs better than anything else I have tried. However, Migraine Hat has spoiled me with its insulated cooler. I really wish I had one for Ice Kap, too. It’s pretty durable, but the stitching of the Velcro strap on the right side has come loose. I tend to tighten that side down more during a cluster attack, so I’m sure it’s just been worn out from excessive use.

No ice pack is perfect because each of us have unique needs.  What I consider disadvantages, just might be a plus for you.


Want to try one for your very own?

Visit IceKap to order yours. Enter promo code “brain” for 10% off your first order!

Migraine Product Review: Migraine Hat

Migraine Product Review: Migraine Hat

The next wearable ice pack I decided to try was Migraine Hat. It took some time getting used to the fit. Once adjusted for size, it fits loosely on the head like a hat, as its name implies. I quickly discovered that Migraine Hat was really great at preventing migraine attacks triggered by overheating. At the time, I was also taking a medication with side effects that caused me to get overheated quickly and easily. By using Migraine Hat, I could reverse this process and be much more comfortable.

Advantages

It is easily worn during everyday activities, so there is no need to raise your arms to hold it in place. Like other wearable ice packs, Migraine Hat allows the wearer to pull hair through an opening in the top of the hat, up off the neck and out of the way. This allows the cooling relief to be felt stronger all around the head. If you need long-lasting relief, the 2 extra gel packs give you the option for all day cold. The hat does cover most of the head and can be pulled over the eyes and ears.

My favorite feature is the insulated cooler. Because the cooler walls have built-in gel packs, it can also be stored in the freezer.  Imagine having portable ice packs that don’t melt, drip, or warm up for hours. Now this is possible with Migraine Hat! I can leave the house all day and take my ice packs with me to use whenever they are needed.

Best of all, it is affordably priced at only $29.99.

Disadvantages

Migraine Hat accommodates a single ice pack that is sectioned into 1-inch squares. I prefer to have multiple gel packs that can be individually removed. Plus, I found that the small gel sections would freeze hard, making the hat uncomfortable while sleeping. It is also loose-fitting. That works fine for preventing me from getting overheated or for mild pain, but it isn’t ideal when I need tight compression over my eye during a Cluster Headache attack.

Although my favorite feature is the insulated cooler, it does have one drawback. When filled with all three gel packs, the Velcro closure does not hold. It is simply not strong enough to secure the weight. Fortunately, the cooler also has a zippered closure and shoulder strap so it can still be carried when full.

No ice pack is perfect because each of us have unique needs.  What I consider disadvantages, just might be a plus for you.


migraine-hat-pic-with-julia-fullWant to try one for your very own?

Visit Migraine Hat to order your own. Enter promo code “dailymigraine” for free shipping.

2016 profits generated from sales of Migraine Hat are donated to Migraine research and awareness.

Migraine Product Review: MigraCap

Migraine Product Review: MigraCap

My first introduction to wearable ice packs was MigraCap. Dreaming of a MigraCap for years, I finally made owning one a priority. When I place my initial order, I discovered that the purple one I really wanted was only available through the UK supplier. It never occurred to me that there would be a problem.

That was a big mistake.

It took almost 3 months to finally get my order. During the wait, I never once received an email stating that my order had been received, was on back-order, or ever notified when it finally shipped. I sent several emails and never got a response, Ultimately, I had to make several international cell phone calls in order to get answers. Due to the 6 hour time difference, reaching them during business hours was tricky. I left several voicemail messages that went unanswered.

It finally arrived!

Out of the blue, without any communication from MigrCap, my order finally arrives. Despite the long wait and lack of communication, I was still excited to finally have it. I read the instructions carefully and eagerly anticipated the next opportunity to try it out. Much to my bitter disappointment, the gel pack that rests over the forehead sprung a leak less than 2 weeks later. I emailed and called several times, never able to reach anyone for help. I even tried disputing the charges with PayPal, but the actual payment was more than 30 days prior to the problem, so I got nowhere. Eventually, I gave up trying to get satisfaction from them and purchased a replacement MigraCap from the US supplier, MigraCap Americas.

Trying again.

My experience with them was much better. I received email messages confirming payment and notifying me when the order was shipped. It arrived in just a few days and has been a indispensable part of my toolkit ever since. Best of all, they now have PURPLE ones in stock. 🙂 If you’re interested in owning a MigraCap in either Black or Purple, I highly recommend ordering from MigraCap Americas.

Advantages

Because it it made of soft, stretchy lycra, MigraCap is very comfortable to wear while sleeping. It effectively blocks out light and offers a sensory deprivation experience so helpful when light and sound start to bother me. MigraCap also helped when I would get overheated, quickly cooling me down to avoid triggering an attack. It is easily worn during everyday activities. Users can pull long hair out of the way through an opening in the top of the cap, allowing the cooling gel to bring relief to the scalp, temples, and forehead. It is moderately priced at $39.99.

Disadvantages

Like many of you, I don’t always need cooling relief over my entire head. Because MigraCap’s gel packs are sewn into the cap, it is not possible to remove or replace them. This is a significant drawback to MigraCap. When the gel pack in my first MigraCap broke, it ruined the entire product. It would be much better if the gel packs were removable for 3 reasons:

  1. Additional gel packs could be purchased to replace any that break.
  2. Additional gel packs could be purchased to replace any that are no longer cold.
  3. Gel packs that are not needed could be removed.

Sometimes I need tight compression around my head to ease the pain from a Cluster Headache attack. MigraCap has a snug, comfortable fit, but cannot be tightened. While it does a great job for easing the pain of Migraine and preventing overheating, it is not ideal when compression is needed.

No ice pack is perfect because each of us have unique needs.  What I consider disadvantages, just might be a plus for you.


migracapWant to try one for your very own?

Visit MigraCap Americas to view product details and order one for your toolkit.

Searching for the Perfect Ice Pack

Searching for the Perfect Ice Pack

If you have Migraine, Cluster Headache, or any other headache disorder, you know the value of a good ice pack. They are the universal comfort measure for us all. Like most of you, finding the perfect ice pack has been a lifelong pursuit.

In the early years, the best available option was a cold, wet wash cloth pasted to my forehead. Obviously, there were problems with this solution. It wasn’t nearly cold enough and warmed up way too quickly. As long as I was laying perfectly still and flat on my back, it stayed in place. If I rolled over or tried to sit up, the cloth would fall off my head.  That simple cloth was never big enough to cover all the painful areas on my head, either. I’ve been on the hunt for something better ever since. I bet you have, too.

My ideal ice pack would…

  • stay in place during everyday activities
  • get cold enough without freezing solid
  • stay cold for more than 5 minutes
  • be refillable or replaceable if broken or warmed up before the attack was over
  • cover the ENTIRE head
  • include the option to tighten the pressure around my head

Trial and Error

In an effort to meet these requirements, I’ve been cobbling together assorted ice packs wrapped in scarves for a few years now. I even tried my hand at sewing my own wearable ice packs! I have spend hundreds of dollars over the years without success. This year I vowed to end the search once and for all by investing in a good quality, wearable ice “hat”. With several options now available, I decide to try 3 commercially-available, wearable ice packs. None of them are perfect and each one has its pros and cons.

While I definitely know which one works best for me most of the time, I’ve found them all useful in different situations. Each of these ingenious products have given me the freedom to move about, hands-free, even while waiting for acute treatments to take effect. Best of all, there are no more sore arms, shoulders, or back anymore. All three have actually shortened my recovery time because I don’t have to cope with all the muscle tension brought on by trying to hold an ice pack in place.

Coming up next

No one solution is ever perfect for everyone. That’s why I’ve decided to offer a comprehensive review of each product to let you decide which one is right for you.  The next few posts will detail my experiences with MigraCap, Migraine Hat, and Ice Kap. See for yourself how using a wearable ice pack can improve your migraine management.

Reduce Migraine Risk in Hurricane Season

Reduce Migraine Risk in Hurricane Season

Severe storms like hurricanes are one of the top Migraine triggers. We may feel helpless in the face of such storms, but there are ways to reduce our risk. We just need to take a few precautions.

Reduce your trigger load

Migraine triggers are stackable. One trigger by itself may not be enough to set off an attack, but start piling them up and the sum total will surely result in Migraine disaster. Rarely will one lone trigger be a problem. Each of us has an upper limit at which our sensitive Migraine brain says, “Enough!” To be sure, our threshold is much lower than someone without Migraine. That is why we must pay attention to triggers in the first place. Just because we have an increased sensitivity to stimuli doesn’t mean we shouldn’t try to lower our risk. By reducing or eliminating known avoidable triggers, we can lower our “trigger balance” and sometimes avoid an attack.

  • Get a good night’s sleep
  • Don’t oversleep
  • Don’t skip preventives
  • Eat regular, nutritious meals
  • Stay hydrated
  • Get some gentle exercise
  • Minimize exposure to the outdoors
  • Practice good stress management

Prepare for the worst.

Even when we can’t avoid the attack, there are still steps to be better prepared. Not having access to medications and comfort measures can quickly turn an inconvenient Migraine attack into a disaster. In the event of a severe storm, we need to consider our Migraine management needs in the event of a power outage, lack of emergency services, or evacuation.

  • Create a Migraine toolkit and keep it well-stocked. Do NOT evacuate without it.
  • Take stock of your medication supply. Get refills in advance. Don’t get caught without treatment during the storm.
  • Make a list of all medications, including dosages and prescribing physician.
  • Stock plenty of ice to use in coolers should power go out to fill ice packs and keep certain medications cold.
  • Treat attacks early so they don’t spin out of control.

Rather than resigning ourselves to migraine misery, let’s view each new storm as an opportunity to practice our trigger avoidance strategies. Every storm offers us a chance to perfect our skills. By taking on this challenge, we feel empowered to take charge of our Migraine disease rather than become its victim.

Run for Migraine Research

Run for Migraine Research

r4r_logoThis morning I had the privilege of an on-air radio interview to promote Runnin’ 4 Research (R4R). Yesterday, I wrote a press release. Last week I dropped off fliers at my fitness center. A few weeks ago, I took fliers, posters, and donation letters around to local athletic shops, universities, and medical offices. Last month, an article I wrote promoting the races was published at Migraine.com. Nearly every day for the past several weeks I have liked, shared, tweeted, and retweeted about R4R.

Two years ago, I met R4R’s founder, Dr. Dave Watson and volunteered to help promote R4R races to raise money for migraine and headache research. At first, my support came in the form of articles, status updates, and tweets encouraging people to donate and participate in the events. When I learned that R4R was coming to my hometown, I jumped at the chance to volunteer. Bringing awareness and fundraising to my friends and neighbors has been incredibly satisfying. I even took the opportunity to encourage my own health care providers to step up and help out.

In just 3 days, runners, walkers, and volunteers will converge on English Landing Park in Parkville, MO to support migraine and headache research. I’ll be at my post to hand out awesome race swag. Participants will receive a comfortable grey t-shirt, water bottle and bag — all with the Runnin’ 4 Research logo. When the race starts, you can find me at the starting line, decked out in walking shoes and ready for that 1 mile walk.

I am dedicating my walk to my 2 year old granddaughter who just last week experienced her first confirmed migraine attack. Part of the money raised by this event will be used to support local research on pediatric migraine. When I think about her inheriting migraine, I get choked up. I’ve almost cried twice just writing this post. I walk so she never has to miss weeks of school, her best friend’s birthday sleepover, lose a job, or miss her child’s ball game or concert. I walk so she never has to face the awful choice to apply for disability benefits. I walk so she will be the last person in my family line to ever have migraine. I walk so she will have a cure.

It’s not too late to join me. Online registration is still open for two more days. You don’t even have to show up in order to help out. All three Runnin’ 4 Reserach events offer a “virtual runner” option for those who cannot participate in person. Whether distance or disability prevent you from running or walking, please consider helping out anyway. Your $20, combined with mine, and that of many others will grow to support scientific research to discover the origins of migraine, understand its impact, develop new treatments, and one day, maybe even a CURE for MIGRAINE.

Last year, Runnin’ for Research donated over $17,000 to headache and migraine research. Millions men, women, and children just like my granddaughter are counting on you to make a difference. Please help us break that record this year.

To learn more, visit Runnin4Research.org
Register for one of our 3 locations
Like Runnin4Research on Facebook
Follow Runnin4Research on Twitter

What’s in a Name?

What’s in a Name?

During a recent discussion about diagnoses, a reader asked, “Does it really matter what the doctor named it?” 

Absolutely, it matters and here’s why.

  1. Using the correct name for a given disease improves communication between healthcare providers to provide good continuity of care.
  2. It gives researchers a common language and clear diagnostic criteria, providing uniform and reliable results.
  3. A diagnosis determines the course of treatment. To use an incorrect term can mean delays in effective treatment.

Headache specialists around the world use the International Classification of Headache Disorders, 3rd Edition (beta) to diagnose migraine and other headache disorders. It is considered the gold standard by which all headache disorders are diagnosed. Yet many doctors do not use the ICHD-3 (beta). That’s where the trouble begins. Often patients will receive a diagnosis from their primary care physician, a general neurologist, or other specialist. They walk away with a non-uniform diagnosis, expecting other doctors to understand these terms. Not using the accepted language to refer to a disease creates confusion on the part of doctors and patients.

The ICHD-3 (beta) separates headache disorders into 2 subtypes: primary and secondary.

Secondary headache disorders are those for which the cause is known. For example, a person with meningitis will experience severe headache pain. Once the infection is resolved, the headache usually disappears. There are hundreds of secondary headaches.

Primary headache disorders don’t have a known cause. As more research is done, we may find fewer primary headache disorders, as study results produce evidence of a cause. For the moment though, primary headache disorders are classified in four ways:

  1. Migraine
  2. Tension-type headaches
  3. Trigeminal autonomic cephalalgias
  4. Other headache disorders

While patients can certainly experience headache disorders from more than one category, it is incorrect to refer to a headache disorder using more than one category. Someone with both Migraine without Aura and Episodic tension-type headache should not be diagnosed with “tension migraine.” The term “tension migraine” does not exist in the ICHD-3 (beta) and has no established treatment protocol. When a person is diagnosed improperly, treatment is often inappropriate and delays relief from symptoms.

Commonly used inaccurate diagnoses

  • Retinal/optic/ophthalmic Migraine
  • Classical Migraine
  • Common Migraine
  • Complex Migraine
  • Cluster Migraine

None of these terms exist in the ICHD-3 (beta)! There are no commonly accepted diagnostic criteria for any of these terms. They mean whatever the doctor thinks they mean and the treatment could be almost anything. When a patient lists one of these as his or her diagnosis, I immediately get concerned. Any doctor who uses a diagnosis not listed in the ICHD-3 (beta) is not likely to be a headache specialist and may not understand exactly how to treat the given headache disorder.

That’s when I offer 2 important tools.

  1. A list of all the United Council for Neurologic Specialties board-certified headache specialists.
  2. A link to the online ICHD-3 (beta)

I encourage all headache patients to have quick access to both of these resources.