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 I got tired of being offered outdated, failed treatments when I knew that better options were available.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.

The Art of Headache Management

The Art of Headache Management

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:Please discuss elements that go into Migraine and Headache management in addition to medical knowledge.”


Art and science working together

There’s definitely an art to managing multiple headache disorders. For the past three years, I have enjoyed the best Migraine and Cluster Headache management in 45 years. That success is due, in part, to advances in medical treatments. Yet the single greatest factor has been my own attitude. When I started taking charge of my own health care, Migraine and Cluster Headache symptoms began to improve.

Hire the right doctor

My doctor is highly skilled and well-qualified to treat both Migraine and Cluster Headache. That, in itself, has made a significant impact on my success. There are a lot of primary care doctors and neurologists who treat Migraine.  In my case, specialized care was required. I have two chronic headache disorders, one of which is rare (particularly for women) complicated by fibromyalgia and depression. I needed a true headache specialist to be my treatment partner.

Take personal responsibility

While the right doctor is a good start, it’s not enough just to keep appointments and take medications as instructed.  80% of my successful Migraine and Cluster Headache management is the result of my own behavior, attitude, and education. Good outcomes don’t happen by accident. Had I been the passive recipient of my doctor’s instructions, I might still be facing down near-daily attacks. Instead, I kept meticulous records of my symptoms, making adjustments in my lifestyle in response to the patterns I discovered.  My doctor can administer Botox injections and prescribe medications, but he can’t make me eat regular, nutritious meals, drink enough water, or get enough sleep. These lifestyle factors are essential to my success.

Create a treatment toolbox

I still get occasional attacks. Fortunately, they respond to treatment most of the time, so I no longer lose entire days to Migraine or Cluster Headache attacks. I believe that successful acute treatment happens for several reasons:

  1. Effective preventive treatment
  2. Use of abortive treatment at the first sign of an attack
  3. Conservative use of pain medication, limited to 2-3 times per week
  4. Generous use of non-medical comfort measures

Some of my most effective comfort measures include:

  • Wearable ice packs
  • TENS unit
  • Heat packs
  • FL-41 tinted glasses
  • Noise-cancelling headphones
  • Custom-designed “migraine cave”

My toolbox is always with me. It doesn’t matter if it’s been one hour or one month since my last attack. I never leave home without it.  These comfort strategies are as essential to my good health as a wheelchair is to someone with paralysis. They are my disability accommodations—the tools I need to access the world.

Don’t forget mental health

Depression and anxiety are common in both Migraine and Cluster Headache. The same neurotransmitters involved in mental illness are also involved in headache disorders and pain perception. Fortunately, my doctor and I have found creative ways to utilize medical treatments that serve double or triple-duty. I practice mindfulness-based relaxation techniques to encourage proactive, realistic thinking. It is my protection against old thinking habits that might threaten my sense of hope.

Cultivate a supportive tribe

Life with Migraine and Cluster Headache is hard enough. The love and support from others is essential. So I take time to nurture those relationships that enhance my well-being. My closest friends and family are those who understand the unique needs of my diseases. They give me strength and purpose, making my world much brighter, even in the midst of pain and disability.

The 2017 Migraine & Headache Awareness Month Social Media Challenge is sponsored by Migraine.Ninja.

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?

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!

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.

High-Flow Oxygen is Exhausting!

High-Flow Oxygen is Exhausting!

Like many with cluster headaches, I use 100% high-flow oxygen to abort the attacks that sneak past the carefully guarded gate of my preventive treatments. The good news is that this strategy works almost every time. The bad news is that doing so is exceedingly exhausting. As much as I appreciate a non-drug, no-side-effect option, I always dread using it. I resist because I know how much it will drain me. You see, aborting a cluster headache attack is not a passive activity.  I can’t just kick back, relax, and gently breathe through a mask. Quite the opposite, I must be actively engaged for this treatment to work.

When the attack starts

It begins with a feeling of heaviness in my right eye, as though someone attached a lead weight to my eyeball. That heaviness is quickly joined by searing heat, like a hot poker stuck in my eye. Within moments, the weight and heat are overpowered by a stabbing pain more unbearable that anything I’ve ever experienced.  Untreated, the pain is so intense that I beg for death to make it stop.

Before it gets that far, I pull the tank close to me. The process begins by opening the valve with a special plastic key. I turn the knob several times to the left until it stops. Next, I twist the dial up to 15.  Oxygen begins to flow from the tank into the green bag attached to the mask. Once the bag is full, I place the mask against my face to form an air tight seal and begin taking deep, steady breaths. Over and over again, breathing in deeply through the nose and exhaling from the mouth.

Time moves slowly

The minutes tick by slowly as I keep checking the time. Experience has taught me that nothing improves for at least 10 minutes. I will never be able to explain how I manage this calm, measured breathing when my eye ball feels like it’s going to explode. I just do it. It must be done. If I want this torturous nightmare to end, I must keep going. There is no other alternative for me. So I keep breathing and watching the clock, praying for those agonizing 20 minutes to quickly come to an end.

My last resort

In the unfortunate event that this strategy does not work, In have one more treatment to try. Sweating profusely, shaking uncontrollably, and fighting off searing pain, there is one last hope. I can draw a 1 mL solution (30 mg) of Toradol into a syringe and stab myself in the leg. For years I could not manage this feat without help. Family members were enlisted to actually inject the syringe. In a desperate moment this year, I found myself alone in the middle of a horrible attack. That was when I finally summoned the courage to stab myself in the leg.

I’d rather have a migraine attack.

When I get a migraine attack, I take medicine that stops it quickly. I may still have some residual symptoms, but can usually be productive when it’s over. That’s not the case with cluster headache attacks. When the whole ordeal is finally over, I am completely spent.  The attacks may be short-lived, but can happen over and over in a single day. If I get more than one attack per day, the exhaustion from this process is magnified, taking days to fully recover. It’s like running a marathon only to get back up and do it again the same day, again and again. I appreciate that breathing in high-flow oxygen stops the attack in 20 minutes or less. Without it, the pain would rage on for up to 3 hours. I just wish that I could find a better abortive solution that didn’t wipe me out so much.

I need a new doctor.

Many people ask me why I don’t use sumatriptan injections. I don’t because doing so in combination with the triptans I already use to treat Chronic Migraine would dramatically increase my risk of developing Medication Overuse headache. I know there are other available options. The challenge is finding a headache doctor who knows enough to prescribe these faster-acting abortives. That’s going to be a tall order in this town. I’ve already begun my search, but my husband and I are fully aware that my next option involves traveling across country to a major headache center. Regardless, I have to find a more appropriate treatment partner. My current doctors are amazing people, but they do not possess the very specialized training to treat such a rare disease.

Spreading Awareness of Cluster Headache

Spreading Awareness of Cluster Headache

Cluster Headache is a rare and misunderstood headache disorder. Patients face a great deal of stigma and difficult-to-overcome barriers to obtain proper medical treatment. This summer, a handful of dedicated cluster headache patients volunteered to be interviewed about their experiences living with cluster headache. We met in a beautiful, resort-like setting in eastern Pennsylvania to embark on ambitious project — the filming of an awareness video. After countless hours of editing, our new friend, Jeffrey Gould of Action Media Productions has delivered this amazing work of art. He eloquently captured the most essential parts of our message…and our pain.

Now it’s up to us to share this wonderful production with the world. Won’t you help us? At the bottom of this page are social media sharing links. Please use them to help us share our message with the world.

Cluster Headache Awareness Video from Action Media Productions on Vimeo.

New Program for Living with Headache Disorders

New Program for Living with Headache Disorders

Today’s blogging tip for the Ultimate Blogging Challenge is to set goals for the next 90 days. The past 90 days have brought some unexpected changes, both personally and professionally, that will definitely influence the direction I take moving forward. It’s not just about me and this little blog anymore. My involvement in other organizations will influence my activities and change my priorities.

Frequency & Structure

While I don’t think I will be able to continue posting daily, I do think that it will be important to publish new content a few times a week. I’d like to do a better job of planning these updates, creating a structure with recurrent themes that readers can look forward to.

Educational Resources

I’ve made several attempts to create a form or discussion board, which will now be abandoned. I’ve decided to focus my efforts more on patient education instead. The recent feedback has clearly demonstrated that readers are craving that information more than just another place to vent frustrations.

Collaboration

Readers will see a clear shift in the assertive promotion of specific organizations. In the past, I have remained rather neutral with a broad, non-specific nod of support for a variety of patient groups. There are simply too many to choose from and not enough time in the day to cover them all.  My energy and time will now be focused on the American Headache and Migraine Association, the Cluster Headache Support Group, and Runnin’ for Research. I encourage all of my readers to support these very worthy causes because I believe they are the ones most likely to effect comprehensive change on a nationwide level.

More to come in 2018

Yes, I’m already thinking that far ahead! Those who face the challenges of migraine, cluster headache, and other headache disorders know all to well the toll these disorders exact on all aspects of life. Even when properly managed, the damage to our emotional and mental health can be monumental. Bouncing back day after day, knowing that the pain will return yet again, can break the resolve of even the strongest. Survival isn’t truly living. We need more.

Keep watching for more as I develop an exciting new program that will offer real-world solutions for living with painful headache disorders. It won’t be about the medical treatments. There’s plenty of great information about that already. This new program will guide you through the art of thriving regardless of the pain.


This article is part of the July 2016 Ultimate Blog Challenge

 

Adventures in Philly

Adventures in Philly

If you had a chronic, painful condition that affected your mobility would you ever consider…

  • flying solo across country
  • managing layovers and connecting flights alone
  • traveling alone to meet strangers
  • accepting an invitation to stay with someone you’d never met
  • renting a car in a strange city and driving to places you’d never been before
  • participate in filming a commercial
  • wearing a bathing suit and jumping into a private pool with people you’ve just met
  • navigating rush hour traffic in an unfamiliar city
  • visit a sick friend in a downtown hospital in an unfamiliar city
  • meeting co-workers for the first time (assume you work virtually)

That’s what I’ve been doing since last Friday and it has been a glorious adventure. Today was my last day in beautiful Pennsylvania and it is bittersweet to leave. On one hand, I am tired, miss my family, and am ready to be home. On the other hand, there hasn’t been enough time to do and see everything, so I will definitely be returning.

Shortly after my arrival, I posted this on my personal Facebook page.

Flew into Philadelphia this morning. Drove right by the USS Constitution and Independence Hall, tried to run over a few DNC delegates, crossed the Deleware (more than once!) and almost took a wrong turn at Valley Forge today. Skipped all that tourist-y stuff just to visit a friend at one of the country’s leading headache hospitals. Spending the weekend in beautiful Doylestown, PA with some cluster headache peeps. Will get down to family tree hunting on Monday in Warrington, PA where the US census last recorded some McClellan ancestors in 1843. I might get around to the Liberty Bell before my plane leaves on Monday evening. Yep, I’ve got my priorities straight.

I didn’t get to Warrington or the Liberty Bell, but I definitely had a great time. Next year, my husband and I are planning to make a vacation out of the trip so we can do more sight-seeing. The part that amazed me most is that I was able to walk through the airport unaided. I didn’t need a wheelchair or any special accommodations this time. My knee has been in such bad shape the past two years that I have needed those supports.

Some of the friends I met with were surprised by my fearless attitude. They warned me of terrible traffic and cautioned me against traveling downtown because of the Democratic National Convention. None of what I encountered was any worse than what I’ve normally faced in my hometown. In fact, I am normally isolated at home, so this adventure felt freeing.

As I left the airport in a little red Nissan rental, I could feel the sense of history in the air. This was the birthplace of my country and the New World home of my Scottish ancestors. I could almost feel my deceased grandmother smiling down from Heaven as I drove.  It was as though she were giving me strength to make this journey. She taught me about our family history and about migraine, so she would have been proud.

I didn’t leave home without a metric ton of accommodations and support items. It’s just not reasonable to expect that I can take off without some serious preparation. So I loaded up my CPAP, my migraine toolkit, O2ptimask, ice packs, Theraspecs and collapsible cane. My adventures were not without pain and mobility limitations — no day ever is. Every minute was worth it though and I will do it again as long as my health permits.

Have you ever embarked on a grand adventure that defied the odds of your health limitations? Tell us all about it in the comments below.

 


This article is part of the July 2016 Ultimate Blog Challenge

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Caregivers Pay a Steep Price

Caregivers Pay a Steep Price

Chronic pain caregivers pay a steep price. Loving someone with chronic pain is a difficult and lonely job. Let’s face it, the scales will never be in balance. You will always give so much more than you will ever get in return. It takes a great deal of integrity to remain faithful to and supportive of someone who is always in pain and won’t really ever get better. Honestly, I’m surprised that more patients don’t find themselves abandoned by their partners.

Recently I had the privilege of discussing this issue with a lovely group of women — both patients and caregivers. It was a raw, honest discussion about the realities of married life when one partner has chronic pain. It’s as though there is a third person constantly trying to undermine the relationship. Pain cancels date nights, kills the sex drive, and sucks up all the financial and emotional resources. If left unchecked, it can completely destroy any semblance of a relationship. Successful couples learn ways to work around that pain, finding creative solutions and occasionally putting themselves first even if it means pushing through the pain or paying the price later.

That pain cannot be ignored either. If the needs of the relationship always take priority, then pain has a way of spreading its impact. If your partner has chronic pain, then you are always going to be in a polygamous relationship. That third “person” is unreasonably demanding and cannot be ignored. It will take your partner away from you. You will feel unloved, alone, and cheated on. Not dealing with those emotions or taking them out on your sick partner will only compound the problem. Unlike you, pain cannot ever leave your partner, even when he or she might desperately wish for its departure. The key is learning how to make peace with it.

The most successful relationships are those in which both partners work together to appease and minimize the impact pain has on the relationship as a whole. It is a delicate balance that requires a level of commitment not often found in today’s intimate relationships. If your partner suffers from chronic pain and you are committed to sticking around, then you have my respect and gratitude. You are a rare treasure.


This article is part of the July 2016 Ultimate Blog Challenge

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