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.