An Open Letter to Everyone with Cluster Headaches—Depression, Suicide, and Isolation

Dear Clusterhead,

Much of the last five years of my life has been spent advocating for cluster headaches, interviewing other patients, and finding treatments that work for me. I’ve been somewhat absent online for nearly three months due to anxiety, depression, and pure exhaustion from the fight.

“I had one of those once,” “My brother has migraines,” “Go lay down and take Excedrin,” “You still have those?” are comments we’ve all heard too many times. They often mean well but don’t take the time to understand that you can’t go lay down, you can’t sleep it off, and they’ve never had a cluster attack because they don’t happen just once.

They’re not migraines. They’re not tension-type headaches. They’re in a completely different group of head pain disorders. They’re one of the Trigeminal Autonomic Cephalalgias (which also includes Trigeminal Neuralgia, Paroxysmal Hemicrania, SUNCT, and Hemicrania Continua), and anyone who suffers from both migraine and a version of TAC will tell you these conditions are a different kind of beast.

So, I retreated into myself because this fight is exhausting and enraging. The new CGRP study FDA approved for migraines was also being studied for episodic and chronic cluster headaches. Guess what? The chronic study was pulled because Amgen beat Teva to the punch and they can’t make as much money off of us. I personally know someone who has become episodic thanks to CGRP and is now left to fend for himself because he can no longer get the treatment. He broke down into sobs as we hugged yesterday at the 5K. We’re one of several small patient groups with the Cephalalgias, and we’ve all been turned away by doctors, pharmacies, insurance companies, spouses, friends, and family members. In some cases, we’ve even turned on each other.

Yesterday was the annual #CureforCluster Virtual 5K by Clusterbusters, and I finally feel that I’m coming out of this dark period of hating myself, feeling that I will never be good enough, and avoiding life because rare diseases and headache disorders are stigmatized.

I am episodic. My fiancé is chronic. Over the last few weeks, I have watched him writhe in pain after one of the few treatments that have ever worked for him wore off. He had back-to-back attacks for four days. I heard his moans and screams. I saw him clutch and hit his head. He paced. He tried every abortive and alternative treatment we had and then some. Knowing exactly what that feels like almost makes it worse because the knife in his head has stabbed me too.

He cried from pain. I cried from helplessness because despite having written a freaking book about it, I can’t help him. We hold each other up so well 95 percent of the time, but it has been a hard few months. Harder than any otherwise healthy person can imagine.

So, how do you keep the fight going, straighten out the misconceptions, and educate people on oxygen, psilocybin, and other treatments when you are standing on the tips of your toes in six feet of water, bobbing for air just to keep your life and the life of your fiancé afloat? I should insert something inspirational right now, but I can’t because I started to drown. We started to drown.

Depression is so invasive that it feels like a friend. The darkness is warm and welcoming. It tricks you into believing that suicide will be like coming home. But, depression is a supervillain who in my and my fiancé’s case had an evil minion poised with the pronged side of the hammer, ready to drive it into the right side of my skull and the left side of his. That foul sidekick is Cluster Headache.

Now that the water is receding and I’ve taken a deep breath, I’m beginning to fight for us and clusterheads everywhere again, because we can’t give up—Because these are called suicide headaches, because these are one of the rarer types of neurological conditions. We must raise our voices just to be heard as a whisper.

I’m not sure what I hope to accomplish with this letter, but I want every clusterhead to know that these thoughts and feelings are unfortunately common. You can only be turned away so many times before you start to think you’re not worth it. You can only hear “I had one of those” so many times before you begin to withdraw into sadness and anger. But you are worth it. We are worth it.

We may be few, but if you’ve ever been to a Clusterbusters conference for cluster headache patients and their families, you know that we are loud. We do have other voices speaking for us through organizations such as The INvisible Project, National Headache Foundation, CHAMP, the Headache Center in Mississippi, Miles for Migraine, Golden Graine, and so many more, but those sounds are often muffled and drowned out by our isolating thoughts.

I hope this dark period is over forever, but I know it will be back. This fight for awareness, funding, and newer, effective treatments explicitly made for us will never be over. However, my voice, no matter how soft, will always stand for you, stand for Andrew, and stand for me.

Life has many amazing and colorful parts—I get to marry my best friend in September. He’s my superhero. My 6’4 Wingspan Man. We have a rambunctious dog, a very particular cat, wonderful family and friends on both sides, and a large family of clusterheads. Depression, suicidal ideations, and isolation stole my vibrancy, but I’m so glad to see purple again.

Sincerely,

Ashley, an 11-year episodic clusterhead

June is Migraine and Headache Awareness Month and purple is the chosen color to represent us. There are many forms of head pain, and each takes a toll on patients’ lives. So, speak your truth, share about your condition, and uplift others.

Cluster Headache Patient & Advocate Discusses Disease on Podcast

Cluster headaches are considered one of the most painful conditions known to man. Podcast Host, Jeff “Leffy” Gaston, and Author Ashley S. Hattle discuss the attacks, episodic versus chronic forms, and cluster headache treatments in the video below.

Hattle is the author of Cluster Headaches: A Guide to Surviving One of the Most Painful Conditions Known to Man. The book can be purchased at https://ashleyhattle.com or on Amazon. Learn more about cluster headaches at clusterbusters.org and clusterheadaches.com.

CYBER MONDAY: $5 Off Your Guide to Surviving Cluster Headaches

 

I hope you had a wonderful Thanksgiving in a home filled with loved ones, plenty of food, and zero cluster headache attacks. Now we enter that time of year for finding the best deal on the best gift for your family and friends. If you know someone with cluster headaches or have family members who struggle to understand what you go through, grabbing a copy of the guide to living with and understanding cluster headaches could be the perfect gift.

Now through Cyber Monday you can grab your copy of Cluster Headaches: A Guide to Surviving One of the Most Painful Conditions Known to Man for $30 instead of $35, or snag an autographed one for $5 off too!

Pain-free wishes,

Ashley S. Hattle

Surviving the Holidays with Cluster Headaches

Surviving the Holidays with Cluster Headaches | Ashley S. HattleIt’s the time of year that most people look forward to starting January 1. Orange and black Halloween decor has been replaced with the natural tones of Thanksgiving and aisles are filled with red stockings. If you have cluster headaches, this is probably the worst part of the year for you. At least, it is for me. I’m episodic, which means I’m healthy for most of the year and struck down by the attacks for about two to three months. Those months are the end of October, November, December, to mid-January.

While most people are excited to start decorating their houses, I’m taking stock of how much medication I have and if I need more oxygen tanks to get me through. Other men and women my age are looking forward to traveling home, and so am I to an extent. But I’m stopped by the memory of that time I was so medicated over Thanksgiving that I barely remembered any of it. Or, that time I had a K10 attack on Christmas day (I was also told I was faking it) and couldn’t make it to our family gathering until several hours later. Another time, I missed my close friend’s wedding ceremony on New Year’s Eve because I was on oxygen at home.

Those are just a few of my tainted holiday memories. I’ve been able to fight back against this current cycle (which started mid-October) and have managed to evade about 90% of the attacks with my ongoing treatment—but I know I can’t depend on that for long. You see, nothing works forever. It’s like our bodies build up an immunity or the disorder evolves with it. Late fall and winter seem to be the most popular season for episodic cluster headache patients to go into a cycle and chronic patients may even go into what’s called a “high cycle” where their number of attacks double. I know I’m not the only one who’s afraid of Thanksgiving and Christmas.

It’s hard to let go of that pain and frustration and still hope to be healthy for the holidays. However, there are a few steps you can take to prevent cluster headaches from destroying your holiday cheer such as:

1. Don’t Forget to Pack Your Meds

Whether you’re staying at home or traveling to see family and friends, your meds and access to oxygen are the most important aspect of surviving the holiday in an episodic cluster headache cycle. I for one stock up on sumatriptan injections throughout the year to make sure I have enough to get me through, but I worry about sumatriptan medication-overuse and rebound headaches. That makes oxygen my favorite holiday friend.

It’s pretty easy to take a few E tanks with you if you’re driving, but flying is tricky. You’ll have to set up a time to pick up at an oxygen supply center in the town or nearby city of where you’re visiting. Amtrak has a specific (and might I add cozy) area for people traveling via train with oxygen. Also, make sure you do this as soon as possible in case your prescription for your medications is out of refills.

2. Be Prepared for Insensitive But Well-Meaning Remarks

Someone—your brother, sister, mother-in-law, or aunt—is going to ask if you’ve tried yoga, acupuncture, massage, essential oils, going to church more, Excedrin, Tylenol, that new, lame Daith piercing or being vegan. Because one of those options worked for a headache they had five years ago. This makes your blood boil as they obviously haven’t done any research into what cluster headaches actually are and are pulling this information from a pseudo-hippie blog they read last week. Try not to cry or yell at them (I know it’s hard). Save your energy for the one who tells you to suck it up and come to dinner while you’re having a K7 and are still bleeding from the injection you had to give yourself.

Your Aunt Sasha is probably going to talk about how she has migraines, so she understands—In her defense, she understands the misunderstanding from your other family members because all the accidentally-insensitive or purposely-rude comments were directed at her last year. She’s most likely the only one in the room who can see from your perspective. Remember to respect her pain, and she’ll respect yours.

It’s your choice how you react, but keep in mind that kind words land harder than loud ones. Tell them:

  • These are not headaches, but a form of Trigeminal Autonomic Cephalalgia and classified by the VA as nonconvulsive epilepsy.
  • The pain is more severe than childbirth, amputation without anesthesia, gunshot wounds, and kidney stones. In fact, cluster headaches are so downright excruciating that the rate of suicide attempts is 20 times the national average in this patient community. “Suicide headaches” are nothing to mock or joke about. Explain that the pain is completely different than that of a tension-type headache or a migraine. It’s an unrelenting stabbing in your eye and temple which is your personal version of hell.
  • You’ve tried many of the outlets available to find relief through abortive and preventative medications and even some alternative treatments. Heck, you’ve probably tried some of the wacky suggestions they gave you.
  • The best thing they can do for you is to make sure you have access to your abortive medication and oxygen tank at all times, and that you’d like to be left alone during an attack.
  • Your triggers, which are typically alcohol, changes in air pressure, times after stress, elevation, heat, and sometimes foods such as bacon. That way they can help you avoid them and alter a certain recipe so you can enjoy it too.

3. Bring Backup Information on Cluster Headaches

Best Book About Cluster HeadachesThere are a thousand things you want them to understand, but they won’t believe it until someone else tells them. You can cry and scream in pain, and while they think you’re uncomfortable, they see you as being dramatic. This is precisely the situation that prompted me to write Cluster Headaches: A Guide to Surviving One of the Most Painful Conditions Known to Man. The book is first and foremost a thorough resource for patients, but it’s also for your family members, friends, and physicians to learn from. Chapter 7—How to Support a Clusterhead: Five Ways to Make Our Lives Easier—is a great and necessary read for your loved ones who are struggling to understand what you go through each year, especially around the holidays. It could be the perfect Christmas gift for the friend or family member who has tried to be supportive but needs to know more.

I hope you have a wonderful Thanksgiving and holiday season, and that your attacks are few and far between (or even better, no attacks!).

Pain-free wishes!

Ashley S. Hattle

Author of Cluster Headaches: A Guide to Surviving One of the Most Painful Conditions Known to Man

 

3 Ways to Tell Cluster Headaches from Migraines

Migraines versus cluster headaches | Ashley S. HattleAnyone with cluster headaches can tell you that the difference between migraines and cluster headaches is like fire and water. They’re both primary headache disorders, but that’s where their similarities end. Cluster headaches are the type of pain that gives you nightmares, leaves you paralyzed waiting for the next attack, and has you contemplating suicide more than you’d like to admit. Migraines are awful in their own way too. However, cluster headaches are classified as a Trigeminal Autonomic Cephalalgia (TAC) along with SUNCT (Short-lasting Unilateral Neuralgiform headache with Conjunctival injection and Tearing—No wonder they made it an acronym) and Paroxysmal Hemicrania. Migraine is its own classification group.

There are actually three “groups” of headache disorders: TAC, Migraine, and Tension-type headache. Additionally, cluster headaches and other TACs are only one-sided, whereas migraines can occur on one side or both sides of the head. Keep in mind that it is possible to have both cluster headaches and migraines, but be careful of the “cluster migraine” diagnosis because that is not a valid disorder.

Other than the distinct classifications, there are three main differences between cluster headaches and migraines:

1. The Type of Pain

The pain of a cluster headache attack is a stabbing, ice pick-type pain that causes sufferers to pace, rock back and forth, scream, hit their head, among others. You cannot sit still with a cluster headache attack, but some long-term sufferers have been able to train themselves through biofeedback to sit still—this is rare though. So, if you can sit down and close your eyes from the get-go, you most likely don’t have cluster headaches. Cluster attacks also come with autonomic symptoms, which involve a runny or stuffy nose, tearing eye, drooping or swollen eyelid, and a contracted pupil. Those characteristics can also be present in other TACs, hence the name Trigeminal Autonomic Cephalalgia.

Cluster headache patients are 20 times more likely to attempt suicide than the average American, earning them the nickname of “Suicide Headaches.” Cluster headaches are considered one of (if not the) most painful conditions known to man. Neurologists and patients agree that the pain is worse than a gunshot wound, amputation without anesthesia, childbirth, and kidney stones.

In short, clusterheads experience pain that is described as an ice-pick or hot poker being stabbed in and out of the eye and/or temple. It’s a stabbing, lancing pain that makes it difficult to think and drives you mad for up to three hours at a time. You won’t be able to sit still with a cluster headache attack, and your face will look like you’re having a mild stroke because of the autonomic features. Cluster headaches rarely come on with an aura, but they do escalate to a K10 (kip pain scale) within minutes and have an estimated male-to-female ratio of 2:1.

The pain of a migraine is described as a throbbing or pulsating pain, which may feel like your head is in a vice. It can make you dizzy and comes with light and sound sensitivity, fatigue, vomiting, and nausea. Most migraine patients prefer to be in a dark room with little to no noise. Migraines have a female-to-male ratio of 3:1, but this does not mean that women don’t get cluster headaches. If your doctor believes you have migraines simply because you’re a woman, get the hell out of there and find a smarter doctor who stays up to date with headache disorder research.

There are some similarities such as both involve an episodic or chronic state, and both are debilitating and disabling. Also, clusterheads and migrainers both like to be left alone during an attack.

2. The Length & Frequency of the Attacks

With migraines, the frequency of the attacks is what classifies you as episodic or chronic. If you have more than 15 migraines a month, you’re chronic. If less, you’re episodic. With cluster headaches, it’s more difficult than that. Clusters occur several times a day, typically around the same time such as 2 pm or 4 am. Cluster headache attacks can happen up to 12 times a day because each attack lasts for 15 minutes to three hours.

Migraines can last for four hours up to three days, which means you get one migraine for several days, but you have multiple cluster headache attacks each day for days, weeks, months, or years. If your pain is throbbing and continues for days at a time, you likely have migraines. If you have extreme bouts of severe one-sided head pain that have a distinct start and stop several times a day, you may have cluster headaches.

But how do you tell episodic cluster headaches from chronic? It’s a weird gray area. If you have several attacks a day for as little as one week or as long as 11 months followed by a remission period of at least one month, you’re considered episodic. If you have daily attacks for at least 11 months followed by a remission period of less than one month, you’re considered chronic. Around 80-85 percent of clusterheads are episodic.

The length and frequency of your attacks, play a large role in your diagnosis. Cluster headaches last 15 minutes to three hours and occur several times a day. Migraines last four to 72 hours, and may not happen daily.

3. The Location of the Pain

We talked about one-sided versus two-sided attacks above, but the actual location on your head is another defining factor. Cluster headaches typically center around your eye and temple. The pain may reverberate to the ear or base of the skull, but cluster headaches impact the eye and temple the most. That’s why so many clusterheads daydream about ripping their eye out of their skull to stop the pain—I’m not kidding. I’ve contemplated pulling out my eye with a spoon, and one patient in London actually did pull out his eye.

The location of migraine pain can vary per patient. The National Institutes of Health describe it as “pulsing or throbbing in one area of the head.” I don’t have migraines, so I can’t attest to the location as well as I can for cluster headaches, but our Twitter Chat in November will help us all understand this distinction better.

These are just three of several differences between the two headache disorders. They also have different triggers such as alcohol and sleep for clusters and certain foods or smells for migraines. Learn more in this Headache Chart by the National Headache Foundation.

Have You Been Misdiagnosed?

Cluster headaches on Twitter

TACs are some of the most misdiagnosed headache disorders out there. Your average physician will likely confuse them with a TMJ (jaw joint) disorder, sinus infection (sinus headaches are a myth according to some neurologists), migraine with or without aura, and trigeminal neuralgia. Misdiagnoses can be dangerous—especially if “Suicide Headaches” are being treated with slow-acting medications because they’re thought to be migraines instead.

Hypnic headache is another disorder that gets confused with cluster headaches because it’s nicknamed the “Alarm Clock Headache” as it only occurs at night, but the pain of a hypnic headache is dull, cluster headache is stabbing and happens during the day too.

This is why you should see a qualified headache specialist or neurologist in your area or state of residence. The right treatment entirely depends on the right diagnosis. It’s like treating heart disease with a diabetes medication—it’s not going to work.

If you recognize your symptoms in the listed differences above, revisit your neurologist (or see another one) to be sure you have been diagnosed correctly. Cluster headaches are treated with high-flow oxygen and injectable or nasal medications such as Sumatriptan and Zomig. The confusing part is that those pharmaceuticals are also used to treat migraines, but often in pill form.

To learn more about cluster headaches versus migraines, please see chapter two of Cluster Headaches: A Guide to Surviving One of the Most Painful Conditions Known to Man. Or, join us for a Twitter Chat on Friday, January 12th from 4-5pm EST using #CHtalk to stay up to date on questions and answers: Cluster Headache Treatments & Emerging Medical Options.

Cluster Headaches: Medication Overuse May Turn You Chronic

Sumatriptan (brand name Imitrex) is one of the most prescribed medications to treat acute cluster headache attacks. For many of us, it’s a godsend. I used to stock up over the year in preparation for an episodic cycle, and I used 2-3 injections a day—sometimes for 60 days or longer. They certainly work, and I was able to function, but it was around that time that my episodic cycles started to last longer. Additionally, I began to get rebound headaches, which is extremely common. According to Dr. Cori Millen of the Colorado Neurologic Institute (CNI), medication overuse (particularly triptans) has the potential to turn an episodic cluster headache patient chronic. Additionally, a 2006 research study found that triptan, opioid, or ergotamine overuse caused both episodic and chronic cluster headache patients to have medication-overuse headaches.

What Counts as Medication Overuse?

The FDA has placed restrictions on triptans for a reason—rebound headaches are well known, and heart problems can also arise. Triptans come in three forms: Tablets (100mg), nasal sprays (5mg, 10mg, and 20mg), and subcutaneous injections (4mg and 6mg). Some of them offer a melting tablet that’s placed under your tongue, and there could be an inhalable option coming soon. However, if your physician is only prescribing triptan tablets, you likely need a new doctor. Tablets are not fast-acting and will not provide adequate relief in time. Regardless of the method, sumatriptan overuse is defined as:

  • More than 12mg in subcutaneous injections within 24 hours
  • More than 40mg in nasal spray form within 24 hours
  • More than 200mg in tablet form within 24 hours

Medication overuse for triptans goes beyond a 24-hour period. Ideally, you’re not supposed to take triptans for more than ten days a month or more than two days a week. This seems unreasonable, though. Even if you only get two attacks per day, you’re only allowed to treat four of them with sumatriptan in a week. That just won’t work, which is why a lot of patients (including myself) overuse sumatriptan. It’s Level A advice for an abortive treatment because it works amazingly well. You can read more about the available treatments in my book, Cluster Headaches: A Guide to Surviving One of the Most Painful Conditions Known to Man

Many of us “break up” the auto-injectors to abort attacks using 2-3mg and to avoid medication overuse, but after talking with Dr. Millen, using any amount of sumatriptan to abort more than four attacks a week or for more than ten days a month can be considered medication overuse.

Do You Have Rebound Attacks or Medication-Overuse Headaches?

I misused sumatriptan for more than five years, and it worked. Sure, I went through withdrawals when the cycles ended, but the fever and chills were a welcome change from the icepick in my head. As I’ve gotten older and my cycles have lasted longer, I now get rebound attacks when I use the injections. I go from two attacks a day to four or five. Whether or not excessive use of sumatriptan caused my cycles to get longer is debatable, because it could be the natural progression of this god-awful condition. However, this information was more than enough for me to save injections only for emergencies and reach for my oxygen mask instead.

Each attack is agony, and I’ll be the first to say I don’t care about the long-term side effects in those painful moments, but time has taught me that I’ll pay later for the injection I do now. I know we don’t have a lot of options, but new clinical trials such as the CGRP antibody studies through Teva and Eli Lilly & Co. and the psilocybin study at Yale are looking for patients like you in the hope that we have more effective and less detrimental options soon.

I’ve heard other clusterheads cite sumatriptan or even verapamil as their “cause” for going chronic, and there very well could be something to that, but we need more studies to be sure.

If you’ve switched from episodic to chronic after overusing any medication, I’d love to hear your story and talk more in the comments.

Pain-free wishes!

Ashley S. Hattle

Author of Cluster Headaches: A Guide to Surviving One of the Most Painful Conditions Known to Man

How to Make the Most of Your Cluster Headache Remission

Learning to live with cluster headaches takes a lot of time. You lose a piece of yourself with each attack. The pain is so searing that you want to forget about it as soon as it’s over, but it’s not over. The next cluster headache attack is just a few hours away, causing fear, anger, and depression to sink in. Only you can choose when it’s time to fight back.

It’s easy to be a victim of this incurable disorder, but it becomes more bearable when you decide it doesn’t define. Now, I know it’s not this easy for chronic clusterheads. Being episodic gives us the opportunity to feel “normal” for a portion of the year because we’re in a cluster headache remission, but chronic patients seem more resilient than many episodics I’ve met. How? By making the most of the pain-free time—whether it’s hours, days, weeks or months.

Many of you know I recently published a guidebook to cluster headaches for patients, supporters and medical professionals. It took three years of interviews and research to compile the book that goes into details about what an attack feels like, the difference between cluster and migraine, treatment options, and tips on how to cope with “suicide headaches.” However, most of that work was done in just six months.

I had to put the book away several times because the cluster headaches came back each time I made progress, but over the last summer, I realized it was time to put away my fear and capitalize on my remission period. I spent every free moment working on the book for four months because I knew if I didn’t do it before my next episodic cycle, it would be another year or two before it was completed. Now, as I enter week three of my fall cycle, I’m so glad I pushed myself to finish this project and a few others before the pain set in.

I’ve heard a lot of episodics, including myself, say that they do every activity they can during their remission. For several weeks or months a year, cluster headaches take over your life, so when you’re finally free, you feel that the world is at your fingertips.

Here are a few tips I’ve learned over the years:

Pick a Project to Focus on or Complete Before the Remission Ends

My project this year was to finish the cluster headache book before my remission ended a few weeks ago. It kept me driven and focused, which left little time to dread the upcoming pain. Being able to dive into a project such as a book, event participation such as Clusterbusters conferences, etc. made the last few months less nervewracking. I knew I had a timeline and that pushed me to do as much as I could before the inevitable happened. I’m not the only one to do this. Making the most of your pain-free time is something many of us try to do. We may be sick (whether episodic or chronic), but it doesn’t have to define us. Think about what you’re passionate about, be it something cluster headache related or a subject more personal and close to your heart.

Give Yourself Something to Look Forward To

My cycles last nearly three months, and it’s around month two (usually December) when I really start to struggle. I try to look forward to something such as being able to go out to dinner without worrying about injections and being away from oxygen. I look forward to drinking red wine again, and bacon. Bacon is a big trigger for me, but it’s also one of my favorite foods. What I look forward to most is the clarity of mind that comes when the cycle finally ends. I can rejoin the world and be social again. I used to fly to see a friend in California at the end of each cycle, which was my favorite thing to look forward to. Each of us is different though.

You’ll need to find what inspires you most to keep going when the cluster headache “beast” is knocking on your head at 2 am each night. I’m looking forward to diving into finishing my fiction book (a fantasy novel about being stuck between life and death) in January. I know better than to put pressure on myself to do anything during this cycle. I also look forward to Headache on the Hill because it’s typically a month after my fall cycle ends.

It’s Okay if You Don’t Get it Done, Just Start

You don’t have to paint the Mona Lisa, write the next bestseller, or anything grandiose. Additionally, it’s more than okay if you don’t finish. Starting the project (and not feeling bad about pressing pause!) is the hardest part. It took me three years to complete the book for a reason. I went from working on it full-time for six months, to juggling a 40-hour work week and the book, to handling a 40-hour work week, the book and cluster headaches. It’s impossible to deal with everything life throws at you and finish your goals at the same time. Don’t feel bad that it’s not done, just start.

I hope this is helpful to other episodic clusterheads, and maybe some chronics too. Cluster headaches don’t define you. You have talent and skill that shouldn’t go to waste when you’re not in pain.

Pain-free wishes!

Clusterhead Survivor Video Blog Features Hattle’s Cluster Headache Book

Tom Termeer is a chronic clusterhead who regularly shares his experience with cluster headaches and chronic pain in his People in Pain video blog on YouTube, ClusterHeadSurvivor. Tom is an amazing individual and dear friend. He created the Cluster/Suicide Headache decals and even made t-shirts to raise awareness for cluster headaches in Canada and the United States. He was kind enough to include my cluster headache book in this video and is quite surprised when he realizes he’s featured on the back cover. Please like and subscribe to learn more about Tom and cluster headaches and follow @CluterHeadTom on Twitter.

Why You Need to Attend the Clusterbusters Conferences for Cluster Headache

The Clusterbusters conferences are unmatched by any other medical gathering of patients. These annual events bring hundreds of cluster headache patients together, which is a life-changing experience for many, including myself. (The 2018 conference for cluster headache patients by Clusterbusters is in Denver, Colorado, September 13th-16th. Learn more and sign up here.) Bob Wold, the founder of the nonprofit organization, has dedicated more than 15 years of his life to furthering research and raising awareness for this misunderstood disorder.

Clusterbusters spearheaded the research at Harvard and Yale with psilocybin and psychedelics. They’ve also contributed to the decreasing number of years it takes to reach a proper diagnosis. Ten or more years ago, it took up to eight years or longer for a doctor or neurologist to correctly diagnose a clusterhead, causing them to go years without high-flow oxygen and other essential treatments. Thanks to Clusterbusters and other head pain advocacy groups, the average time to diagnosis is closer to two years now.

My first Clusterbusters conference was in 2014. I went to Nashville (the conference locations change each year. Denver is the 2018 location.) with a camera, a voice recorder and pen and paper prepared to hunker down and do more than a dozen interviews and soak in as much knowledge as I could. I found all of that and more. I walked into the welcome reception and found an overwhelming sense of love and understanding. Many of these people took me in immediately and shared more wisdom with me than eight months of research had taught me. My cluster headache book became more than an outlet of information for new patients. I needed to tell their stories. The trials that patients and their supporters face every day is more difficult than you can understand.

2018 conference for cluster headaches | Denver | cluster headache patientsThe 12th Annual Clusterbusters Conference took place two weeks ago in Chicago from September 14-16. There were more than 200 attendees registered, which is more than any other year. Ainslie Course was a fantastic moderator, and Eileen Brewer planned a flawless event as usual. Dr. Brian McGeeney, our favorite neurologist, from the Boston Medical Center speaks at the event every year. Dr. McGeeney and Dr. Larry Schor‘s speeches are the most important ones to sit in on for newcomers and returning attendees.

Erika McDermott also gave a stunning speech about her personal experience that left not a dry eye in the conference room. Other speakers included Dr. Emmanuelle Schindler from Yale University, Hans-Joerg Tangermann of Germany, and many others. gammaCore® talked about their vagus nerve stimulator which has shown great promise in treating acute attacks, and Katie Golden, Dr. Robert Shapiro and I were on the Advocacy Panel to discuss how we can continue to raise awareness and funding for cluster headaches and other types of head pain.

Bob Wold Present Ashley Hattle with Exceptional Education in Cluster Headaches award

The Clusterbuster event reminds us all that we’re not alone and several thousand online viewers were able to see snippets of speeches. This year’s conference was particularly exhilarating for me because my book, Cluster Headaches: A Guide to Surviving One of the Most Painful Conditions Known to Mandebuted the week prior. Wold and Brewer were kind enough to give me a table to do book signings, and I sold out on the first day of the conference. I was honored to receive the award for “Exceptional Education in Cluster Headache” from the organization.

The most meaningful moment for me, however, was handing Wold a copy of my book. His experience and expertise along with many others made my book possible, and I’m truly amazed at the response to the book. I set out to help the newly diagnosed. I set out to write the book I needed when I was diagnosed. I ended up with a thorough guide to cluster headaches that can help new and old patients and also family, friends, and physicians of patients.

I can’t praise this organization or event enough. I highly recommend attending one if you can. It doesn’t matter if you have clusters or if you know a friend of a friend who has clusters, this yearly gathering will forever change your perspective on living with one of the most insidious pains a human being can experience.

If you’re interested in checking out the cluster headache book, view sample pages and reviews on Amazon and order a copy here or on Amazon Prime in the U.S. and Europe.