How I Used MyClusters to Track My Last Cycle

*This is my own personal experience as a patient and is most definitely not any medical advice. If you experience painful headaches, please contact a healthcare professional

Getting Diagnosed and Going Chronic

I’ve had cluster headaches for over 9 years, but I only got diagnosed 6 years ago. For a long time, I was episodic. Then, in 2023, things got worse.Daily attacks, sometimes up to six a day. I couldn’t function anymore and had to put my life on pause.At my worst, I was on 540mg of Verapamil, using about 5 oxygen cylinders a week, and taking Zolmitriptan 5mg. Alcohol wasn’t a trigger for me, but I couldn’t deal with the pain, sleep disruption, and the exhaustion of repeated attacks.

For about two months, I was getting three attacks a night, waking up exhausted, and then waiting for the first morning attack—which would hit within an hour or two of waking up. That one was always the worst. Sometimes even an hour of oxygen at 25L/min wouldn’t be enough.

I tried different treatments:

• GON injections

• Busting (though not exactly by the steps)

• Vitamin D regimen

By spring 2024, I started improving. But I had no idea what actually worked. Could have been the alcohol abstinence, the GON injections, nothing at all, or just the season changing.

Tracking My Next Cycle

In October 2024, I started noticing shadows and minor attacks. At first, they were on the right side—manageable without acute meds. But by late November, the pain increased, and this time, the left side was more dominant.For years, my attacks had been right-side predominant. Left-sided attacks were rare, and if I had them, they were around a 4-5 pain level. Now, I was getting 7-9 pain level attacks on the left.

For three days straight, I had daily attacks at 10:30 AM. Then, they settled to 3-4 per week.This time, I had MyClusters. I was the first user of my own app, and from Dec 5 to Jan 12, I tracked everything properly.

What the Data Showed

I’d always assumed my worst attacks were after lunch, but the reports showed the most painful period was actually between 4-10 PM.

Cluster Headache attack times

Another unexpected pattern—I never had an attack on Wednesdays ¯\_(ツ)_/¯

No attacks on Wednesdays

No changes in sleep, stress, diet, or routine.No adjustments in medication or exposure to triggers. Just no attacks on Wednesdays.

The scatter plot showed a clear cluster headache pattern. If I didn’t already have a diagnosis, I’d take that chart to a GP and ask for a neurology referral.

✔ Attacks mostly under 3 hours

✔ Happening at the same times of day

✔ High pain intensity

✔ Always one-sided

Scatter plot of my Cluster Headaches showing attack times usually hovering around late afternoons and almost all attacks under 3 hours

The End of the Cycle

Whenever I sleep badly and under 6 hours I worry I’m going to get an attack. I’ve known for a while now that bad sleep is my biggest trigger. This makes sense as Cluster Headaches are linked with the biological clock in the Hypothalamus and circadian rhythms. So it’s a correlating factor but also an effect of attacks. Bad sleep causes my attacks, but the attacks make me sleep worse. I had worked on getting to a normal sleep rhythm through the year, but after the attacks started I noticed that I was waking up earlier than usual and falling asleep later in the night, which had a cascading effect on the attacks.

What was super interesting though, is that my afternoon naps used to help me before. In my last cycle, I would sleep badly, and if I skipped an afternoon nap I would get multiple attacks in the night. But this time I noticed that I would (attempt to) nap, started feeling better after a brief rest only to then get hit with an attack. Is this why most of my attacks were late afternoon? I think so, possibly. Also showing me again that just when I think I know what to do, some new pattern pops up.

It took me a while, but I forced myself to sleep longer, changed my early morning routines and meetings, blocked the afternoons for myself, stopped taking naps. After a couple of weeks, I started waking up later in the mornings and skipped afternoon naps altogether.

By late December, I hit the “why me?” stage. I wanted to continue the clinical study, but the pain became unbearable. I dropped out, got a GON injection on the left side, and over the next 2-3 weeks, attack frequency and intensity started declining.

Attacks started getting shorter

Pain level started dropping 2 weeks after GON injection

Eventually, the cycle stopped.

Days are getting longer, which historically has been good for my cycles. I assume it’s gone for now.

I hope I don’t have to use my own app again, but that’s wishful thinking. I expect it to come back around April. Until then, I’ll try to add more historic sleep and activity data from my wearable and see if there are any other patterns.