Three clusterheads compare attacks over a month - Part I
I sat down with two fellow cluster headache sufferers and MyClusters users and we compared our reports and discussed which reports are useful, how we use them, amongst other things. If you have other insights let us know. Follow us on instagram for more insights and stories
Disclaimer: This is not medical advice. MyClusters reports can help you analyse attacks after they happen and can help you answer questions your doctors usually ask you. If you experience painful headaches, please contact a healthcare professional
Introduction
Darshan:
I am 37, have had cluster headaches for 9 years that I can remember, was diagnosed in 2018, thought I went chronic in 2023/2024 with daily attacks for almost 10 months and towards mid 2024 went back to episodic. Disclaimer: I am the founder of MyClusters. I recorded my last cycle in December/Jan while we were still developing the first prototype. I am using reports from that.
Clusterhead 1:
I am 30, have had cluster headaches for 8 years, got diagnosed after 3 years (2020). It started off as episodic, 2-3 episodes per year that could last up to 3 months each. The episodes become longer each year. I don't even remember exactly, but in 2020 an episode lasted for 7 months and in 2021 one started that never stopped.
In 2022 they diagnosed me with chronic cluster headaches.I have been keeping track for about 1,5 years, and imported some data in the MyClusters app and have been testing ever since.
Clusterhead 2:
I am 28, have had cluster headaches for 9 years now, and got properly diagnosed after 6 years (2022) of appointments with the GP). At first the attacks were very short and stinging, like a thunderclap, this happened a few times a week. Progressively, the attacks became more frequent and persisted longer. In 2022 I got declared chronic after a 37 hour lasting attack.
I've been keeping track of my headaches for about 2 years, which I want to eventually get all of in the MyClusters app, and I'm excited to help test and develop to make the app even more complete.
Filter period: 1 month
Number of headache-free days
Darshan
This for me is not a forward looking insight, but rather gives me an idea of how the last month has been. Sometimes I put pressure on myself that I’m not doing enough but if I see that I had only a few headache free days it helps me get perspective.
Clusterhead 1
I can see this was not my best month. I experience Approximately cluster-attacks on ⅔ of all days, tracked over a year. No wonder I am feeling so tired. Keeping track by yourself is not doable. You won’t remember your last pain-free day, it will always feel like forever.
Clusterhead 2
This is a feature that I, myself, don't have much use for right now. Attack-free days I haven't had for a long time. I hope in the future if the ONS(Occipital Nerve Stimulator) works well or something else may be found,
Good and bad days
Darshan
Fridays and Saturdays are usually when I’d sleep later than I do on weekdays, so my sleep timing is something I look out for when I see a particular day with many attacks. I’d sleep late every other Monday too as I’d go to a pub quiz. To summarise I use this to
Look into my good and bad days
Plan to do more stuff on the “good” days
Look into what I’m doing on the day or before the days with a higher number of attacks
Clusterhead 1
I actually never had this point of view. Apparently my weekends are the worst.
Thinking back to the beginning times of my cluster headaches; I got misdiagnosed for a long time with weekend-migraines. All because I noticed the headaches would occur when relaxing, weekends, a day off or vacation. I wouldn’t say relaxing is a direct trigger, but now it’s clear it does have a huge impact on the cluster headaches. Always keeping busy isn't an option, that resulted in a burn-out before.
Clusterhead 2
For some time now, my days have all been roughly equal in numbers. Before this, when I was not declared medically untreatable yet, and thus prescribed medication, it fluctuated a bit more, but overall the numbers were almost equal. Something I can see very well in these overviews, though.
If you set the filter to a week, for example, you can track and see it even more accurately. This has made me realise that I don't have to leave things out on certain days. If no day is especially better or worse, it's better to just plan and go on good luck. Sometimes things go wrong, but often they go right. After all, you already have to leave so much behind and the beast comes when it feels like it.
Scatter plot of attacks
Darshan
This may be my favourite visualisation. You can clearly see the clustering of my attacks. If I didn’t have a diagnosis this is what I’d take to the doctor. There’s 2 key things in this chart for me, which are important characteristics for cluster headaches
Attacks happening around the same time everyday (clustering)
Attacks often range usually between 15 mins and 3 hours
You can see most of my attacks are in the afternoon. Which I knew kinda intuitively after 5-6 attacks, but I find it interesting to see when exactly it happened and this is difficult for me to remember more than a week. I also have a recency bias and recall bias, I tend to remember the most painful ones more clearly.
The biggest takeaway for me was to stay at home between 14:00 and 16:00 to be close to my Oxygen.
Bad sleep is a big trigger for me but also an effect. When a cycle is about to start I usually tend to wake up an hour before my natural waking time. In my previous cycles, I used to nap and this would help me. But this time around naps would trigger the attacks. So I experimented with forcing myself to sleep earlier, sleep longer and then tracked how it affected my attacks.
Clusterhead 1
I would have never have said my cluster-attacks would occur at the same times, but looking at this chart, they do more than I thought!
My mornings, 6am-12pm, are the worst, but I have to admit this is when I sleep. At night-time I’m mostly lying awake as a result of persistent shadow-pain (which is not recorded in the app) and a fear of sleep I’ve built up during the years when I did experience a lot of attacks waking me up.
As you can see, afternoons are the best part of the day for me! Completely different from Darshan, for example. I think this is a result of me staying busy or occupied. In the end of the afternoon and evenings, when I relax a bit and rewind from the day, the cluster-attack could start again. All my attacks are short, because I use Sumatriptan with each attack.
Clusterhead 2
I'm colour-blind so the colour difference here is a bit tricky for me, but it does give good views into when attacks happen and how long they last.
Here you can clearly see that the oxygen or triptans don't break down the attacks for me. Overall most are between 1 and 3 hours or longer. Rarely do I have a shorter attack.It is nice to see that the early morning is actually always ‘saved’ for me! Though, most of the time this is when I'm overly exhausted and just lay in a sort of comatose state, so that's probably why.
Just goes to show that every cluster headache patient is different.
Cluster headache time interval %
Darshan
More than half of my attacks were in the afternoon. Which makes me question sleep times, duration, what I did in the mornings if I can change when I eat.
Clusterhead 1
This is also pretty clear to me. Like I said before, between 4am and 12pm is where I sleep and you can clearly see that with sleep(waking up/disrupted sleep) being my biggest trigger, this is the worst part of my day.
The chart does come in handy, even not providing new insights at this moment; as soon as I see my attack shift more towards 12am-6am, I know the mid-sleep attacks are coming back more and more
Clusterhead 2
This gave me a great insight! I always thought the nights were the worst but it is clearly afternoon based on the data. Maybe it feels heavier or longer at night because you want to get some rest and time passes a lot slower. This may also be the result of the fact that attacks at night often last much longer. In terms of total time, the afternoon and evening might be almost equal, but the individual numbers differ.
With this data, I can work on paying more attention to what I do in the afternoons and whether I can find a main trigger or other triggering factors in it. If I then compare these periods I can draw connections and conclusions from them.
Pain location
Darshan
Completely left sided so this is more a circle than a pie chart. I was predominantly right sided before with some attacks on the left. I then started getting GON injections on the right and I suspect the attacks sneakily switched to the left.
Clusterhead 1
Completely right-sided. Never switched, never been different.
Left side is where the shadows often start, but I believe I’ve never experienced a cluster-attack on the left side of my head.
Clusterhead 2
Side switches are more frequent (higher percentage) than I thought. Also the intensity and duration of the left-side attacks is a bit higher overall.
I did switch sides completely before a couple of times and the pattern was the same there. When it was mainly on the left, the right attacks were a bit milder. Now it is the other way round, so most attacks occur right-sided and the left ones are heavier.
That’s it for this blog. In part 2, we will look at comparing graphs of duration, intensity, top triggers and medications. If you think this was useful, sign up for our beta to analyse your own attacks.
