Cluster Headache Blog

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.

How to Start a Support Group for Cluster Headaches in Your Area

I never saw myself running a support group of cluster headaches. Sure, I’d connected with several people in Denver, but it wasn’t until a fellow patient asked, “Is there a cluster headache support group I can go to?” that I realized it was not only a great idea but a necessary one. It was one of those “duh” moments because I was already fielding phone calls every other day at all hours. That was how the Denver chapter of Clusterbusters began—with one simple question.

Our January meeting marked two years since our inception, and in that time, we have gathered more than a dozen cluster headache patients in the Denver area to meet monthly or quarterly, depending on the season. Last year, we organized the first-ever 5k run/walk for cluster headaches, which is back this year! The #CureforCluster 5k will take place on June 16, 2018, at deKoevend Park in Centennial, Colorado. A beautiful park with ample space and trails.

We’re not the only support group for cluster headaches, though. There’s a Michigan Clusterheads meeting coming up on May 6th in Lansing, and California has regular meetings as well. I and several others on the Clusterbusters board have been asked about the steps needed to start a cluster headache support group in your area.

I got lucky at first because my headache specialist would send her new patients to our group and feel that’s what helped us gain a following, but I also utilized Facebook groups and MeetUp.com to spread the word. I’ve broken down my advice into three easy steps to help you establish and continue a support group in your area.

Before we dive in, it’s important to remember that these meetings are indeed about supporting each other and sharing your struggles and advice with others. Some of us are seasoned pros when it comes to living with cluster headaches, but newcomers often feel overwhelmed and just want the pain to end. That’s why you’re there—Share, Listen and Advise. Proper oxygen use is something we strive to mention at every meeting because it’s rare for a newcomer to have the correct setup and breathing technique. You may even want to have a demo at one of your first gatherings!

All right. Now that we’ve established a mission statement you can use for your group, here’s my advice:

1. Start Small.

Cluster headache support group in Denver | Clusterbusters Our first meeting in Denver involved me and two other episodic clusterheads sharing drinks at a local pub. We took pictures and posted about it on social media (mainly Facebook groups for cluster headaches). By the time we met the following month, we’d more than doubled our numbers. Two years later we have at least ten people at each meeting, but we’ve dialed it back to once every other month.

Our affiliation with Clusterbusters has helped build our numbers along with a close relationship with neurologists and headache specialists in the area. Most doctors don’t know what to do with their cluster patients so having a group to point them toward helps everyone involved.

If you’re hoping to start a support group for cluster headaches in your area, reach out online and find at least two others who want to meet up. That’s a great way to start, but don’t be disappointed if it takes a while for the meetings to catch on. Chronic clusterheads seem to be the ones willing to attend each gathering because episodic clusterheads may not want to think about cluster headaches when they’re not in pain. (I hear that!)

2. Find a Good Meeting Place & Stick With It.

We continued to meet at local restaurants until our group hit 10+ people. We needed a space where we could speak openly about alternative treatments and actually hear what the person across from you was saying. I contacted the Denver Library system and figured out which libraries had a meeting room available during our meeting times. We jumped from library to library for a bit before settling on the Schlessman Family Branch Library as our go-to meeting spot. They charge $10 per hour, and we typically meet for two and a half hours. We try to split that as much as possible while also asking for volunteers to bring snacks and drinks.

The main thing to consider when looking for an ideal meeting place for your cluster headache support group is the price. Some restaurants have a food and beverage minimum while others want an upfront fee. You may find a coffee shop willing to give you a break, but they probably won’t do it monthly. Churches and schools also have meeting rooms you can rent, but personally, I prefer the library.

3. Have an Agenda for Each Meeting and Set Goals.

cluster headache treatments abortive and preventative | support groupThis could be the first time you or other members of the support group have met another cluster headache patient. There’s usually tears, laughter, and a feeling of family that comes with this painful connection we have with each other. It’s easy to get off topic and focus too much on one person. You need to remember that the group is for everyone with cluster headaches or who is affected by them such as supporters. I’ve found that having an agenda for the meetings is the best way to keep things flowing. It’s also fun to include a little questionnaire about cluster headaches and assign “homework.”

Here’s an example of one of my earlier agendas for the Denver group:

  • Quick intro of everyone—Name, episodic or chronic, how long, and where you’re from.
  • Discuss the current studies on cluster headaches and how to participate.
  • What do you use as abortives and preventatives? Do they work for you?
  • What’s your worst memory of an attack or your worst experience with cluster headaches?
  • What’s do you (supporters only) struggle with most as a supporter of a loved one with cluster headaches?
  • Open speech
  • Homework: Tell at least two random people you meet about cluster headaches (that’s 14-16 more people who know about “suicide headaches”)
  • Farewell

You can see that it’s straightforward and leaves room for changes. As our group progressed, our agendas became more detailed and often involved a whiteboard. One of my newer agendas includes:

  • Welcome/Introductions
  • Advocacy—What we can do to raise awareness of cluster headaches?
  • What are cluster headaches to you? (Supporters and patients) What do they feel like or how do you describe them?
  • *Smoke Break*
  • Oxygen demonstration with the cluster-specific mask, 25 lpm regulator, and an E tank.
  • List out abortives and preventatives we’ve taken and rate their efficacy.
  • What alternatives have you tried? How well do they work for you and would you recommend we try them?
  • *Group Photo*
  • Schedule out next meeting.
  • Decide on goals moving forward such as speaking to your pharmacist about cluster headaches and oxygen. (They see more CH patients than you realize.)
  • Farewell

Starting your own cluster headache support group may seem difficult, but it’s much easier than you think. Organizing and leading these meetings takes up maybe two hours of my time from meeting to meeting. That includes the time it takes to gather materials such as the oxygen pamphlet created by Clusterbusters, t-shirts to giveaway, etc. along with compiling the agenda for the next meeting and creating a Facebook event.

When you schedule your first meeting, let me know by emailing ashley@clusterbusters.org so we can create a Facebook event for you and point patients your way.

Pain-free wishes!

Ashley S. Hattle

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

Member of the Board of Directors at Clusterbusters—Nonprofit organization for cluster headaches

Medical content and fiction writer

Are Cluster Headaches as Rare as They Say?

Are Cluster Headaches as Rare as They Say? | Rare DiseasesIf you’ve been diagnosed with chronic or episodic cluster headaches, you’ve undoubtedly heard that it’s a “rare” condition. But, is it? Approximately one in a thousand have cluster headaches, and that number could be higher considering the rate of misdiagnosis in the patient community. A disease is typically considered rare when it affects less than one in 2,000 people in Europe or fewer than 200,000 in the United States. The estimated U.S. population is nearly 326.6 million people according to the US Census Bureau, which means about 326,500 Americans live with cluster headaches. Not such a rare disease, eh?

While cluster headaches affect more than 200,000 people, they can still qualify for The Orphan Drug Designation program because drug and device manufacturers are less likely to recover the cost of developing a treatment. However, the qualifying criteria are so vague and complicated that very few drugs have been included in the FDA program and discounts that come with it. Additionally, Cluster Headache is listed as a rare condition by NORD (National Organization for Rare Disorders), but not uncommon enough to warrant NIH funding under the Rare Disease Clinical Research Network.

The Problem with the Word “Rare”

When we call this brain disorder “rare,” we minimize the impact it has on patients, their loved ones, and their quality of life. We also minimize the financial strains it places on everyone involved—Drug and treatment manufacturers, insurance providers, and out-of-pocket patient expenses. Patients often spend thousands of their hard-earned income on high-flow oxygen therapy alone because Medicare/Medicaid (and therefore private insurance companies) refuses to cover the cost. If this disease is so rare, why is the number one treatment banned from coverage? The actual cost is minimal when compared to sumatriptan injections and other abortive or preventative medications.

There are several conditions that you’ve probably heard of and don’t consider rare, but in actuality, these disorders affect the same (.1%) or fewer percentage of Americans as cluster headaches:

  • Multiple Sclerosis (.1-.2%)
  • Autism Spectrum Disorder (.146%)
  • Down Syndrome (.1% or less than)
  • Narcolepsy (.074%)
  • Sudden Infant Death Syndrome or SIDS (.05%)

Some well-known diseases affect a smaller percentage of the population such as cystic fibrosis, which impacts around 30,000 Americans and ALS (Lou Gehrig’s Disease), which impacts just 6,000 Americans.

There are more than 7,000 conditions on the Rare Disease List, most of which are genetic, but the prevalence of each disease varies. According to Global Genes®, 80 percent of those with a rare disease are affected by just 350 of the 7,000 conditions on the list.

How Many People have Rare Diseases?

Approximately 30 million or 10 percent of the U.S. population has some form of a rare disease. Maybe they have cluster headaches or MS, or maybe they have Vampire Syndrome (Xeroderma Pigmentosum), which affects one in a million in the United States and one in 22,000 in Japan.

Cluster headaches are less common than migraine and tension-type headache. They’re less common than most forms of head pain. Technically, these bouts of extreme, ice pick-type pain are rare, but they’re one of the most common of the rare diseases.

Learn more about rare disease statistics.

Pain-free wishes!

Ashley S. Hattle

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

Member of the Board of Directors at Clusterbusters—Nonprofit organization for cluster headaches

Medical content and fiction writer

P.S. There are organizations such as Rare Patient Voice that specialize in raising awareness for less common conditions and connect patients with current research and surveys regarding their disease. I encourage anyone with cluster headaches to check out their website. If you sign up and list Clusterbusters as your referral, they’ll donate $5 to the organization.

5 Struggles People with Cluster Headaches Face at the Pharmacy

Pharmacist with Patient | Cluster HeadachesFor most people, the pharmacy is that corner in the grocery store you occasionally go to for antibiotics and other normative sickness medications. The pharmacy is a weekly, if not daily, stop for cluster headache patients and really anyone who has an unrelenting condition. One trip to the drugstore for me can involve at least one phone call to the pharmacy itself, another to my doctor, and perhaps one to my insurance provider. All of that happens before I even leave the house to go to the pharmacy.

I know I’m not the only person with cluster headaches to get panic attacks just thinking about refilling a medication or a new medication that doesn’t have a generic yet. I’m not even going to get into how difficult it is to get high-flow oxygen for cluster headaches—the most effective cluster headache treatment. There are dozens of struggles we face before, during, and after the pharmacy visit, but I’ve narrowed it down to these five:

There are dozens of struggles we face before, during, and after the pharmacy visit, but I’ve narrowed it down to these five:

1.    “Your Insurance Won’t Cover this Medication.”

Many medications used to treat cluster headaches are prescribed off-label. Why? Because there hasn’t been any pharmaceutical drug created specifically for cluster headache patients, so we’re left with calcium channel blockers, steroids, anti-seizure, anti-psychotic, anti-inflammatory, and anti-migraine drugs. Some insurance providers won’t cover an off-label prescription, especially if it’s going to cost them a lot of money, and so you have to jump through hoops, such as:

  1. Asking the pharmacist to call your insurance company
  2. Calling your doctor and asking him or her to call your insurance company
  3. Calling the provider yourself and begging for an exception
  4. Paying out of pocket for the medication and filing a claim to be reimbursed

If you have excellent insurance, you may never face this issue, but unless it’s documented that this drug (for example, Verapamil or Topamax) is effective at treating cluster headaches, you could be left paying out of pocket.

Advice: Try to make friends with your pharmacist. They can run interference and help you out when you’re in too much pain to handle the insurance issues.

2.    “It’s Too Soon to Refill this Medication.”

Medication injections | cluster headache treatment options Here’s when my panic attack begins. You see, abortive medications such as sumatriptan injections and Zomig nasal spray are expensive and taken as needed, so insurance companies put limits on how much you can have per month. Some approve as few as four injections a month whereas others allow up to 20 or an unlimited amount, but often you can only get two at a time. During one cycle, I went to the pharmacy every day for 28 days to refill my injections because I was using two per day and could only get two at a time.

Each cluster headache patient is unique. I have 2-4 attacks a day during an episodic cycle, but others can have as many as 12 short-lived but excruciating attacks a day, meaning some clusterheads will use more meds than others. Now, it’s only safe to use up to 12 mg of sumatriptan/IMITREX injections a day, and the prefilled syringes come in 3mg, 4mg or 6mg. The point here is that patients are screwed over in a sense because they’re often left without adequate amounts of abortive medications because of insurance restrictions on when and how many times they can refill a prescription.

It’s important to note that too much sumatriptan and other abortives can cause rebound attacks or “medication overuse headaches.” Some research suggests that medication overuse can turn episodic cluster headaches to chronic.

Advice: Your neurologist, headache specialist or whoever prescribes your abortive meds may need to file a claim with your insurance provider to allow you to fill your prescription and receive more than the company’s mandated monthly allotment. This usually works, but may need to be done every year. However, the absolute best advice I can give you is to request the sumatriptan vials—you get more bang for your buck and can fill the syringes with as little as 2-3 mg depending on how much it takes for you to abort an attack.

Loophole: I recently found out that you can call your insurance company and make a “vacation request” to refill your medication faster. You can do this by stating you’re going out of town and need your prescriptions while you’re gone. Keep in mind that you can only use this loophole once or twice.

3.    “We’re Out of Your Medication.” Or “We’re Waiting on the Manufacturer.”

This one grinds my gears the most. I once drove to four King Soopers in Denver just to refill my injections because every other store was out of them (granted, I was the reason my local one was out). It would be nice if you were told this before you drive to the pharmacy, but life is never that easy. You could avoid this by calling the drugstore beforehand or asking if they’re well-stocked when you do get it filled.

Now and then, the manufacturer of certain medications can get behind or put on hold the development and distribution of the drug. That’s utterly ridiculous and quite dangerous for patients whose lives depend on pharmaceutical interventions. This happened recently with sumatriptan. There’s not much you can do in this case but try another abortive such as the nasal spray in the meantime. This could be a good opportunity to try the newer options out there such as the handheld vagus nerve stimulator by gammaCore® which was *gasp* made specifically for cluster headaches!

Autonomic Technologies™ also created an SPG stimulator for cluster headache patients. It’s approved in Europe and will hopefully be available in the U.S. in Summer 2018. It’s shown great promise in clinical trials, and I’m excited to see how our patient community will benefit when it’s an option for us in America.

4.    “We’re Waiting on Approval from Your Doctor.” or “You’re Out of Refills.”

The waiting game for these phrases is mind-numbing. Luckily, I have a great headache specialist (Dr. Judy Lane at Blue Sky Neurology in Englewood, Colorado), but even the best doctors can take a while to get back to you or the pharmacist. You basically have to leave several messages for your doctor’s medical assistant and cross your fingers that he or she will get it done quickly.

Cluster headache patients are not the only group to experience the “out of refills” dilemma. However, this situation is particularly paralyzing because going one day or even a few hours without an abortive medication could mean the difference between life and death. Cluster headaches are nicknamed “Suicide Headaches,” because of the high number of patients who’ve taken their lives due to the pain.

Advice: Whenever you go to see your neurologist or prescribing physician, go over your list of medications and make sure you have enough refills for the next few months or year. Ask him or her about emerging treatment options and if they have any samples in the office. You can also ask if there’s a cluster headache clinical trial for which he or she thinks you would be a good candidate.

5.    “Does this Work for Your Migraines?”

This isn’t a struggle but more of a pet peeve of mine. The abortive medications clusterheads are prescribed are usually used for migraines, so naturally, the pharmacist assumes I have migraines. In my not-so-proudest moments, I’ve exclaimed loudly (Okay, I yelled), “I don’t have migraines. I have cluster headaches. Do you even know what they are? Yes, they work to treat the attacks, but it doesn’t change the fact that I have four of them a day, one of which is coming within the hour.”

I’ve gotten better over the years. Bob Wold of Clusterbusters (a nonprofit organization for cluster headache patients) sent me oxygen pamphlets, which I dropped off at several pharmacies in Denver to help both pharmacists and patients understand cluster headaches and that high-flow oxygen is the best abortive treatment.

Advice: It’s easy to react, but it’s more rewarding to educate.

cluster headache medications and treatments | Books on Cluster Headaches

The pharmacy is a scary place for me during an episodic cycle—I have vivid memories of having attacks while waiting in line and losing my spot to go ride it out in the back seat of my car, of tears streaming down my face while the pharmacist told me she couldn’t fill my prescription that day, and of my friends yelling at the pharmacist for me while I writhed in pain in the passenger seat.

I hope this article doesn’t open old wounds for you but rather helps you gear up and prepare for the struggles you’ll more than likely face next time you go to the pharmacy.

Did I miss any of your pharmacy hassles or pet peeves? Let me know 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

Member of the Board of Directors at Clusterbusters—Nonprofit organization for cluster headaches

Medical content and fiction writer

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.

How to Get & Use Oxygen to Treat Your Cluster Headaches

You know you have cluster headaches. It may have taken months or years, but you finally have an official diagnosis. Hopefully, your neurologist or headache specialist already wrote you a prescription for oxygen, but even so, they likely failed to mention it’s not as simple as breathing in air. You need a special mask, a high liter flow, at least one big tank, and several small tanks. One of the best resources for correct oxygen use to abort cluster headaches is found at Clusterbusters.org, but an extensive study by Dr. Todd Rozen published in Headache 2010 is an eye-opening resource for how difficult it is for patients to get a prescription, find the right supplies, and use it correctly.

There are five aspects to keep in mind as your doctor writes the prescription and you take it to an oxygen supply store including:

1.     The Oxygen Prescription

Whether it’s your neurologist or primary physician writing the prescription, they will likely get it wrong, which will give you yet another hurdle to jump over. Or worse, they may refuse to write the script altogether. Here’s what you can do:

  • Direct them to well-respected resources of information. A 2009 study by Drs. Goadsby, Cohen, and Burns found that 78% of patients using inhaled high-flow oxygen were able to abort 71%-85% out of 150 attacks. In comparison, just 20% of patients using room air responded, and even then, it worked for only 14%-26% of attacks. The study concluded that there’s a significant difference between high-flow and room air when it comes to treating cluster headaches with oxygen. That’s only one study of dozens. The troubling thing is that Medicaid and Medicare still don’t think there’s enough evidence, which is another reason why we go to Headache on the Hill each year.
  • Encourage your physician to dig deeper and learn more about this mystery condition nicknamed “Suicide Headaches.” There’s a reason why oxygen works, but we haven’t found it yet, nor do we know what causes cluster headaches. But, we do know that it has to be 100% oxygen at the very least 12lpm. Some patients have found relief with up to 40lpm. However, your physician will probably worry about “oxygen toxicity,” but unless you have a pre-existing lung disease or issue, you will be fine using it for 15-20 minutes at a time.
  • Come prepared to explain what the prescription needs to say in order to get the right tank set up. This means your oxygen script should say you need at least 12-15 liters per minute (lpm) “as needed for cluster headaches.” That phrasing will help you overcome some of the trouble you’ll undoubtedly face at the oxygen supply company and your insurance.
  • Find a new doctor. If you’ve tried and tried to make your physician see the facts, it’s time to move onto a neurologist or headache specialist who knows how to treat cluster headaches.

2.     The Flow Rate

The flow rate for your oxygen regulator is another part of the process where you will most likely face opposition. To avoid this, I suggest buying your own regulators (which can go up to 25lpm or higher) on Amazon. When you go through the oxygen company, you pay a rental fee for the regulators, and you will have to fight tooth and nail for them to give it to you. The two main regulators you will need are for the E Tank, which is about 2-feet tall and often seen being wheeled around, and the M Tank, which is about 3.5 feet tall and sometimes called a J tank.  Some cluster headache patients use a demand valve that ensures a consistent flow or a bubbler system to help with the dry mouth.

3.     The Oxygen Supply Company

This is where the metaphorical headache really sets in. Depending on where you live, you will either have one choice or several. You can ask your neurologist for a recommendation or go to www.homeoxygencompanies.com to find the company nearest you. I recommend avoiding Apria Healthcare for oxygen. They’re notoriously horrible to cluster headache patients, and you will not find compassion from their employees. As you weigh your options, compare the prices. Some require a monthly payment; others make you pay per tank—Remember that your insurance company will most likely not cover the cost.

Once you’ve picked the company, you’ll have to scan/fax a copy of your prescription or bring it in person. Then, you can set up automatic deliveries or pick them up yourself each time. Keep in mind that you can go through several tanks a week, depending on the number of attacks, chosen liter flow, and size of the tanks.

4.     The Mask

Cluster headache mask | clusterheadaches.com

Now that you have your regulator and tanks, you need to have the right mask. The oxygen company probably gave you a nasal cannula (the one with prongs that wraps around your ears and sits inside your nostrils), which won’t work. You need a nonrebreather mask, which means the mask they may have given you won’t work either because it has holes on either side of the nose. You can either tape over those holes, or buy the mask that’s specifically designed for cluster headache patients, the ClusterO2Kit™.

5.     The Tank

I mentioned E tanks above. They’re the oxygen tanks you see people wheeling around with them to the grocery store. If you’re using 15lpm, an E tank will only last you 35 minutes, which is probably enough for two attacks. These tanks should be saved for when you’re away from home. You can keep one at work, in your car, etc.

Oxygen tank sizes in U.S. | clusterheadaches.com

 

The M tanks are the ones you really want. They’re hefty and last much longer. All in all, you should have several E tanks on hand for emergency situations, and two or more M tanks at home so you don’t run out during a bad bout of attacks such as an episodic cycle or “high cycle” for chronics. You can choose to get smaller tanks that fit in a backpack, but they will only last for one attack if that.

If the oxygen company delivers the tanks to you, make sure they show you how to set it up. You’ll need a special wrench for the M tank regulator and a separate one for the E tank.

Now you have everything you need and can start aborting attacks with high-flow oxygen. This abortive treatment has little to no adverse side effects, can be used any number of times a day, and works for approximately 80%-90% of patients.

6.     The Right Breathing Technique

Your breathing technique is the most important aspect of using oxygen to abort a cluster headache attack. It’s not as simple as breathing. There are two techniques, and the first seems to be the most widely used.

  1. Aborting Cluster Attack with Hyperventilation Technique: Begin by exhaling completely to the point where you hear yourself wheeze. Take quick, short breaths in until your lungs are full and do a complete exhale again. Repeat this until the attack has passed, but no longer than 15 minutes at a time. If the attack persists, take a ten-minute break and try it again. You should have around 24-30 breath cycles each minute using this option, and you’re supposed to feel lightheaded once it’s done.
  2. Aborting Cluster Attack with Nasal Inhalation: Personally, I’ve never used this technique, but it involves breathing in through your nose (but still using the nonrebreather mask) and out through the mouth with a complete inhale and exhale.

Some research suggests that you can prolong the length of time between attacks by switching to the nasal cannula for 20 minutes after aborting the attack. In which case, you can lower it to 5lpm, use the prongs, and breath normally again. You can also do this for 20 minutes before bed to possibly prevent a nighttime cluster headache.

The information in this blog is the tip of the iceberg when it comes to cluster headaches and oxygen therapy. There’s so much more to know, and if your doctor refuses to learn with you, I highly recommend finding another one.

The road to diagnosis is just the first battle, and unfortunately, there’s a lot of misinformation online about cluster headache treatment. Please, scroll past any article that says “natural remedies” or “cure” for cluster headaches. The best information out there can be found on Clusterbusters.org and clusterheadaches.com, but there are also fantastic Facebook groups (“Cluster Headaches”) with seasoned clusterheads who can answer your questions based on experience.

Learn more about cluster headaches and treatment options in my book Cluster Headaches: A Guide to Surviving One of the Most Painful Conditions Known to Man, which can be found on Amazon and www.ashleyhattle.com.

Pain-free wishes!

Ashley S. Hattle

Author, Writer, Episodic Cluster Headache Patient

Update: The demand valve is considered by some to be the best oxygen delivery method because it delivers the oxygen at the flow rate you choose without wasting precious oxygen. You don’t need a bag for this method because the valve shuts off when you exhale. Also, an E tank lasts 3-4 attacks, which is why several on hand is recommended. — Thank you, David Nickerson.

 

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