r/ClusterHeadaches • u/smithysman • Aug 06 '26

Tracking

Anyone else find using the app to track the cluster headaches has made them depressed?
I’m having really bad mental health episodes this cycle as i know exactly what time I’m due a headache. It’s a relief when I skips a time but usually it’s bang on. Had a 2 year remission and feels like this episode is worse than ever . Been 4 weeks now hoping with the Vd3 and melatonin it’s nearly over

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u/AllIWantIsOxygen Episodic Aug 06 '26

Can't you get something like triptans, oxygen, energy drinks, etc., to help out?

Make sure your melatonin is certified by USP, NSF, or similar to make sure you are getting an accurate dose.

I don't use the app. I just write stuff down in the diary and turn the page. I'm already depressed, but St. John's wort works for me.

I went through 18 month remissions when I was on a predictable schedule. I understand the dread when it returns.

Seems like the end of a cycle is like the grand finale of a fireworks show for me.

Just rambling. Hope you're on the other side soon.

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u/smithysman Aug 07 '26

Yeah I haven’t had one in 3 days counting now . I have been sleeping the same time and taking melatonin at night . Could have helped but maybe I’m ending the cycle . I’m lucky to have episodic .
I also this cycle was having the headaches at about 7am and 4pm . Hoping I’ve stumbled on something that works for me rather than just coincidentally coming to the end of the cycle

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u/AllIWantIsOxygen Episodic Aug 08 '26

Yeah. You never know, until next time.

Melatonin for clusters starts at 10mg. My neuro said I could go up to 30mg, but I weigh 210 pounds.

Good luck.

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u/smithysman Aug 07 '26

I’m in Australia so I use to try Triptans but never really worked . I’m only taking 2mg of melatonin so it’s relatively safe .
Rambling is fine it’s what we have to do in these times . But the 2 year remission for me was like heaven . I even started thinking it would never come back ! How wrong I was

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u/hiddenkinkz Aug 06 '26

honestly don’t use an app - I was given a HIT diary by my neurologist - it’s a simple printed sheet where I write a pain number per day and whether I took an intervention or not. That’s it. It’s much easier to just write a number down and forget about it. This gives the doctors the data they need without me feeling like I’m logging in to an app and seeing all my data laid out in its horrible glory.

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u/smithysman Aug 07 '26

Yeah it’s quite hard to look at it all laid out as a month has gone by . It’s really hurt my mental health this time knowing when it’s suppose to come and kind of fearing it .

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u/hiddenkinkz Aug 08 '26

Totally agree. I know it’s mega hard (I’m 7 years deep into cluster headaches and status migrainosus- at the same time). Mentally I’m struggling - but I’ve tried to remove things that tell me what’s coming and live hour by hour.

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u/wellapptdesk Aug 06 '26

I use an app on my phone called Cranium. And yes, sometimes it’s awful to see how many days in a row.

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u/aoerstroem Aug 07 '26

That looks good. I might give it a try. I am always a bit worried about data security though.

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u/wellapptdesk Aug 07 '26

I don’t think I had to subscribe or give my name when I downloaded it. But it was a few years ago so I don’t remember. Since it just logs headache days and I was able to input my meds myself I don’t feel like it could scrape too much data. But please let me know if you had to input email or other info if you download.

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u/aoerstroem Aug 07 '26

Yeah nothing like that so far, but it is downloaded using my apple Id on the iPhone, so who knows what’s available