Three clusterheads compare attacks over a month - Part II

Apr 14

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. The medications mentioned are prescription medications after a confirmed diagnosis. Do not self-medicate. 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

Duration and Intensity graph

Darshan

I use this to see how bad my attacks have been lately and in combination with the scatter plot. I look into how my pain levels are based on the time of day. And how my pain levels are when I use Oxygen vs triptans for example. I tend to feel that with oxygen my pain levels are more under control compared to triptans, but I don’t like taking triptans. And I realised I almost delay taking triptans by about 5 mins which makes a world of difference. I don’t hesitate with Oxygen. Overall I still prefer Oxygen but I’m not at home at all times.

Around 20th of December I got a GON block, and I could see it taking effect around the first week of January. Even though the attacks didn’t stop immediately I could see the pain levels going down

Clusterhead 1

For me it’s clear that the attacks that occur during or around sleeping time are the most intense. This is because I wake up from the attack when it’s already at a pretty painful point, so it takes me longer to take my Sumatriptan shot.
The longer I wait taking a shot, the longer it takes for the attack to fade away. The longer it takes, the more intense the pain will be.
I also often dream of taking the Sumatriptan injection, so I get even more confused which will result in delayed treatments.

During the day I act very quickly. I learned when having migraines, to act within the first signs of an attack starting. Also because of a lot of migraine medications being in tablet form (takes way longer to dissolve), plus most of the times an aura alerting you that a migraine will start soon. In this chart you can see I still act that way, and my attacks never last that long.

The one attack you see peaking out in the duration-chart, is an attack where one sumatriptan injection wasn’t working. It takes some time to realise this (at least half an hour after the first injection) before deciding to take a second sumatriptan injection.

Clusterhead 2

As you can see my average attacks are between 1,5 and 4 hours per attack. I do tend to think for instance that days with low air pressure and being less active were days that genuinely have more attacks with a longer duration. Same goes for high air pressure and shorter attacks.

Nocturnal attacks are often the longest in terms of duration and, linked to this, are relatively more likely to have a higher pain score. I can partly cope with the pain for quite a time but in the long run it still breaks you.

I also have attacks below pain score 7 but I scale these under Shadow Pain. These are the more nagging ones, mostly without symptoms and can last for a very long time, to the point of insanity. I have sometimes tried to trigger an CH attack during a shadow. Just purely because then you know what to expect and have a idea of the duration. Quite bizarre if you think about it!

Most used medications

Darshan

Fairly straightforward. I prefer Oxygen over triptans but it’s not always practical. So I monitor my triptan usage here. In my previous cycles I had multiple attacks a day, and in those cases I don’t care about the after effects of Triptans. I would still try to limit Triptan usage, and check if I get more rebound headaches.

The triptans are fast acting and easier to carry around. But knowing when I am likely to get attacks helps me plan better. I planned to be home during late afternoons and scheduled the other work, activities around the attacks.

Clusterhead 1

Another example of how every cluster head is completely different.

I do prefer Sumatriptan, because it’s the only thing that actually works for me. I do always have oxygen at home, but it’s more a “just in case” option for me. For a year or so, I rarely experience an attack where the sumatriptan doesn’t work, unless I take a second shot (you can see I recorded one “Sumatriptan” instead of “Sumatriptan Injection 6mg”. This indicates a second shot I had to take during an attack. So from this infographic you can make up, I had 36 attacks of which one, one Sumatriptan-shot wasn't enough for it to abort the attack. (You can see this attack peeking in my duration/intensity charts!)
This scares me a lot, and I will always be afraid that the triptans will stop working for me. Another reason I like to keep oxygen by hand.

Oxygen only delays the attack a bit for me (only when using an expensive Demand Valve mask), if it even does anything at all.
Triptans do make you feel extremely tired, mess with your concentration and much more, but I rather feel tired from this than from having to experience the worst pain imaginable for 1,5-3 hours. Frovatriptan doesn't have that many side-effects and only sometimes works for the shadow pain.

Clusterhead 2

Here it is clear how much medication is being used. I have periods where I was taking a lot of injections (200+p/m) and using a lot of oxygen. Even though it doesn't ease the pain most of the time, when it does, it helps a little bit with the intensity.

I have reduced the amounts several times, including at the beginning of last month. In the results, I can now see clearly that there is slightly less intensity and duration over the whole month than with a lot of triptans and oxygen.

I do want to find out if it becomes different with just using one of the two, for example (I highly prefer Oxygen, triptans make me feel like a zombie). And I can get that insight now by keeping good records and comparing the results.

Most common triggers

Darshan

I’m not the best at identifying triggers. For me Bad sleep is the most common trigger. I know when I wake up if it’s going to be a headache day and then it’s a countdown to get as much as I can done before the attack. Bright lights were a new trigger though, I would get an attack every time I used a second screen to work. This never happened with screens before.

There are some days I get an attack without any specific trigger.

Clusterhead 1

This isn’t giving me a lot of new insights, but it could be handy to keep an eye on triggers shifting.
I have a few common triggers; alcohol, sleep, resting, heat and bright lights. They all act up in periods;

There are times I can’t sleep through the night, there are times I can’t drink without it triggering an attack. But there are also times where I can!
If I would see alcohol shift, I would think twice about drinking a beer.
Same with sleep; if sleep is a big trigger, I can keep in mind to plan things later in the day, so I can try to regain some energy right after the tiring nights.
When I see heat shifting, it’s a sign for me to not take hot showers, not wash my hair, or shower right after waking up.

Clusterhead 2

Not enough data yet to show a good graph derived from the app. But from what I can see and now test, I have found out that strong smells and nitrate-rich food can sometimes trigger an attack.

Which I am (relatively) sure of are;

Sharp (fake) light; A bright fluorescent lamp, TV in a somewhat dark environment, mobile Phone if looked too long at, or a laptop screen.
Poor sleep; when I have slept badly, the following day is often relatively worse in duration, number and intensity.
Sleep; I hear this from many clusterheads as a trigger and I do often wake up at night from CH. If I sleep longer than a short nap during the day, I tend to wake up with an attack as well, so this does seem to be a regular trigger for me.

That’s it for this blog. Missed part 1? Read it here! If you think this was useful, sign up for our beta to analyse your own attacks.

darshan Ramanagoudra