The Empowerment of Taking Control of Your Cluster Headaches

The first time you have a cluster headache attack, you may feel like you're having an aneurysm — that you are dying —because surely this amount of pain that comes on so suddenly would kill you, or at least make you pass out.

Disbelief of the painful memory

But somehow, you survive the up to 3-hour ordeal. You look back over your time in agony in complete disbelief. What was that? Did it really hurt that badly? For me, a sort of flip switched in my head after my first attack. I didn't want to think about it, to tell anyone about it, and I definitely didn't want to consider it could happen again. But it did happen again, the next day at the same time, and it kept happening for two weeks before ending without reason. Again, I told myself it's over, and I never have to re-visit that nightmare.

Surviving each cluster headache cycle

These strange mind games with myself went on for several years. I was the picture of health for six months and then struck down by cluster headaches twice a day for 2-3 weeks at a time. Stuck in an endless cycle of going to the pharmacy every day, hoping insurance would cover my two injections but prepared to pay more than $200 out of pocket because relief from the next attack is priceless. Eventually, I learned to stock up on sumatriptan injections between cycles.

Increasing attack frequency

Then, the 2-week nightmare grew to a 2-month hell. The cluster headache beast was determined to break me before leaving me alone for another half year. The attacks increased from 2 per day to 6 a day and woke me up every time I reached REM sleep.

Trying to starve the attacks

I lost an average of 10 pounds each cycle, hoping to starve the attacks out or get my body to focus on another area. School, work, and social life were impossible during these times. My friends knew to leave me be to ride it out, and I let them know when I could return to the world. Although, I never felt like myself when I saw them after an attack.

Finding better doctors and headache specialists

During my longest cycle, which lasted around 65 days, I finally realized I needed more help. I'd been going to doctors at Urgent Care since being "fired" as a patient from the University of Colorado for missing 2 appointments when I couldn't drive to them during attacks.

An effort towards oxygen therapy

I found a friendly, seasoned primary care physician who quickly realized he was out of his comfort zone in treating my cluster headaches. He did the preliminary research and prescribed me oxygen — albeit he prescribed me low-flow with a nasal cannula and an oxygen concentrator. (Instead of high-flow with a tank and non-rebreather mask.) The point was that he tried. He was the first doctor to try and treat me with anything other than sumatriptan since my cluster headaches began nearly six years earlier.

Researching and learning all I could

He referred me to a neurologist in Ann Arbor, Michigan, whom I saw around 1 month later. In the weeks before college started again and the appointment, I poured through all the available research on cluster headaches online in 2014. I bought three books hoping to learn more, but sadly, each was more disappointing than the last. The only resource with reliable information on my condition outside of the Mayo Clinic and PubMed was Clusterbusters.org. I found out about the nickname "Suicide Headaches," and a surprising treatment researched at Harvard with positive results—Psilocybin Mushrooms and LSD.¹ To my surprise, they held an annual conference for patients to learn more about cluster headaches. I felt like I'd struck gold.

A proper episodic diagnosis

The neurologist in Ann Arbor confirmed my episodic cluster headache diagnosis, and I asked him around 40 questions I'd prepared. He gave me a correct oxygen prescription for up to 15 L/min and another referral to his colleague in Denver, where I lived. The only frustrating part about the 4 hours I spent at his office that day was the nurses who told me I had migraine disease because women don't get cluster headaches — a stigma I continue to fight today.

Meeting other "Clusterheads"

I attended my first Clusterbusters conference that Fall in Nashville. I found myself immersed in a sea of knowledge I couldn't find anywhere else. Notable neurologists were giving hour-long presentations about the pathophysiology and treatments. Talks and discussions about the mental health toll of "suicide headaches" were covered along with ongoing research and patient experiences. It was a 2-and-a-half-day event, and I cried (happy tears) for most of it. For the first time in seven years, I felt completely understood by a room full of strangers who quickly became like family.

My takeaways from the conference

My biggest takeaways were that I needed to give psilocybin a shot because it had given people back their quality of life after years, sometimes decades, of pain and disability. I also learned the correct breathing technique to abort attacks with high flow oxygen and that the sumatriptan injections were likely the culprit for my cycles getting longer.

Educating family and friends

My mom came with me that year and my dad the next. They both learned more during the conference than I could ever explain. You see, events like the Clusterbusters conference are essential for family and friends too because your loved ones don't want to believe you when you say you're in the worst pain imaginable. Like the mind games I played with myself initially, they think there's no way it could hurt that badly. But when a room full of strangers ranging from 12 to 75 years old say the same things, the severity of cluster headaches comes into focus.

Understanding the pain

It's not about proving it's the "worst" pain. There are many painful disorders. To me, it was about proving to them why I needed fast-acting medication and effective preventive treatment. The pain may reside in my head, but it was by no means your average "headache."

5 ways I took back control

From my first attack to my first Clusterbusters conference, I stumbled many times, learning to navigate the world between cycles and in the hours between attacks. There was an incredible sense of empowerment that came with learning all I could and meeting other people who were not only surviving the attacks but thriving. The changes that made the most significant difference for me were:

1. I got a medical bracelet that said: "Episodic Cluster Headaches, Oxygen Needed," along with my emergency contact information, name, and date of birth.
2. My oxygen system got an upgrade with the ClusterO2 Mask, and I could abort attacks within 9 minutes.
3. I tried the Harvard-researched alternative treatments and skipped my next cycle completely.
4. My family and friends finally understood what I went through and how they could help me.
5. There is a vast support system at my fingertips on the Clusterbusters forum and closed Facebook groups where I can ask any seemingly insignificant question.

The attacks are still as scary as the first time, but I'm down to just one cycle per year. I have a treatment "toolkit," and an amazing support system in my husband, family, friends, and, most of all, the cluster headache community.