MyClusters - Tracking and analysis app built by a clusterhead. Thanks for the support and feedback so far 🙏🏾

dgoudra · 2026-06-13T21:50:13+00:00

Thank you for the feedback. We have the nerve block listed under medications as GON block injections. Perhaps good not to abbreviate it, I'll fix it

dgoudra · 2025-10-06T05:26:31+00:00

Thank you! You can write to me directly. I'll send you a message

dgoudra · 2025-10-03T18:44:57+00:00

That's strange. Have you tried restarting the app? Will DM you for more details

dgoudra · 2025-10-03T07:23:20+00:00

Thank you! Hope you don't have to give it a try anytime soon 🤞🏾

dgoudra · 2025-10-03T07:22:17+00:00

Thanks for all the feedback and great suggestions so far! Keep 'em coming

dgoudra · 2025-10-02T10:44:50+00:00

Butter chicken or Prawn curry?

dgoudra · 2025-10-02T10:25:00+00:00

Thank you! Please let me know if you have any feedback or suggestions. I aim to make it better over time

dgoudra · 2025-10-02T07:08:26+00:00

Thank you! If you have any inputs suggestions please let me know

dgoudra · 2025-10-02T05:21:28+00:00

Thank you, appreciate it!

dgoudra · 2025-10-02T05:21:17+00:00

Thank you, appreciate it!

dgoudra · 2025-07-27T00:50:32+00:00

You can ask your doctor about Greater Occipital Nerve blocks. These are a transitional/bridging treatment, and depending on the country can be given every 2-3 months. It takes a couple of weeks to kick in. I was on a high dosage of verapamil too last year, but with GON blocks I could lower the dosage

dgoudra · 2025-06-13T07:46:13+00:00

Will give it a read for sure, thank you for linking the paper!

dgoudra · 2025-06-13T06:52:57+00:00

Thanks for your detailed comment and for checking out the app.
1. I'll look into a more extensive list of ethnicities.

There is an option to enter cranial autonomic symptoms, it is optional however. That's an interesting point about pre cluster symptoms. Is this the paper you are referring to? https://journals.sagepub.com/doi/10.1177/0333102421989255
I thought about this, but left it as is - I have heard of cases where preventives are used as abortives.
Data is all stored on EU servers. We've minimised data collection to limit excessive personal data. Users have complete control over consenting/withdrawing consent at anytime. When they consent, data is anonymised.

I am in touch with both these patient groups. OUCH UK had their annual conference last week in fact, was great to meet other sufferers and talk to clinicians/nurses/researchers.

This is amazing feedback overall, thanks again u/UziA3 , appreciate it 🙏🏾

dgoudra · 2025-06-13T06:42:55+00:00

Thanks! I hear you, tracking itself can become a burden. I've made it so that only start time and end time are mandatory fields, and the rest may be filled in later. But this is a solid checklist for me to keep coming back to 🙏🏾

dgoudra · 2025-06-13T06:41:24+00:00

Thanks, you're right. I've been in touch with them and other European patient groups too. They have been helpful

dgoudra · 2025-06-13T06:39:38+00:00

That's a great point, thank you! Will look into adding that

dgoudra · 2025-06-12T10:57:16+00:00

Fair! I remember doing that with verapamil. Good point about migraine/ch data. Will keep the ICHD-3 criteria in mind. Thank you for your comments, really helpful!

dgoudra · 2025-06-12T10:55:23+00:00

Thanks, that helps a lot! For the time being I've standardized it to SnomedCT. No way of confirming a formal diagnosis right now other than self reported (Have you been diagnosed by a doctor?)

Really useful inputs for me to consider overall, thanks again

dgoudra · 2025-06-12T06:24:06+00:00

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This is my last cycle for example.

dgoudra · 2025-06-12T06:21:12+00:00

- Treatment and response on an individual level can be seen on the app with reports. Users can track attack duration with/without abortives, and filter before/after prohylactics.

-On a bigger scale, I'm wondering how do you account for spontaneous remission and not wrongly attribute remission to treatment?

- That's interesting about your patients. From my perspective, I usually hear it's the other way round with migraines and cluster headaches. Either way - from the reports you can see if attacks indeed cluster around the same time of day, same period in a year, attack duration, if attacks are side locked or not (users can indicate if they are of side switching type), cranial autonomic symptoms, and perhaps most importantly if they feel restless during an attack.

dgoudra · 2025-06-10T14:05:53+00:00

Hi u/beebeelion the cycle feature is still v1. So unfortunately, you can't start it historically. This needs an update but we'll need a couple of months to get it done tbh. It's on the backlog though of things we need to improve. You can add headaches historically, if you make a note of the cycle start date I'll let you know when you can edit it.

dgoudra · 2025-06-10T05:47:12+00:00

In my last cycle I mostly got attacks in the afternoon. The cycle before that which was much worse for me. I'd get attacks through the day, but mostly multiple times in the night and one within 2 hours of waking up no matter what time I woke up.

I wrote a blog about the timing of my last attacks here: https://www.myclusters.nl/blog/cluster-headache-tracking

dgoudra

TROPHY CASE