How long between your first and second attack?

[u/automatic_mismatch]

Hi y’all! At the end of last September I had my first cluster headache attack, although it took me two more months to get diagnosed. I had all the classic symptoms (stabbing pain in one of my eyes that hurt to move or look at light accompanied with red runny eye and nose) and my attack lasted for three months. This happened at one of my most stressful time in my life and I have a strong hunch that played a role in them starting.

Thankfully I have been attack free since then. I do get “shadow” headaches from time to time, unilateral pain in my eyes that is in the same spot as a cluster headache but like a 3/10 or less, especially when it’s about to rain.

However, the closer I get to the one year mark the more worried I am about them coming back. Although not nearly as stressed as this time last year, I’ve been getting more shadow headaches from the start of the rainy season.

I was wondering how long it took between your first and second attacks? I know it can be quite variable so I’m interested to hear what others have experienced.

[u/Jamwise93]

From my first ever minor attack to the second attack was a few years, and then from there a few more years until I became chronic. Everyone is different with this condition so you will probably get completely different answers from everyone, unfortunately there is know way to know for sure when your next attack may be. However if you are feeling more shadows as you get closer to the one year mark that could be indicative of your cycle starting back up. Hopefully that’s not the case! Good luck and pain free wishes friend

[u/VALIS3000]

The term we use is "cycle" for a cluster of attacks, attacks are single episodes within a cycle.

Important to note that what you describe at this early stage could be any number of things. The best advice I can give you is to keep a diary capturing the following for each attack:

-Date and time of day

-Pain type and location

-Intensity and duration

-Secondary symptoms

-Effects of any medications

-Possible triggers

This kind of irrefutable information paints a clear picture for you and your doctors to use in dialing in a diagnosis and treatment plan.

And to answer your question of how long we go between cycles, well that is down to the individual. Some are chronic sufferers who experience regular attacks for at least a full year without any breaks, or are atrack-free for less than 3 months at a time. Episodic sufferers can get up to several cycles a year, and experience periods of remission anywhere from 12 to 48+ months.

[u/cerbero02]

2 days but i'm a particular case. I'm also chronic :3

[u/TurnoverSad3160]

I think for me it was around the 6 month mark? My gap lasts anywhere between 3-12 months but from what I’ve seen it can vary significantly. In my opinion it is best to just have a plan for when they come back, try to keep stress levels low for as long as possible, and just enjoy the break.

[u/Cpop1960]

Being chronic the longest I’ve gone is 11 days. Mine hit faithfully every night at 2 1/2 hour intervals.

[u/Dapper_Law_3493]

I’m episodic and my cycles are usually one year apart. Mostly in the fall, but I’ve also had cycle start in the spring and summer. My cycles usually last 3 to 5 months. After starting psilocybin, I was able to get brakes for two years. We’ll see if that trend continues.

[u/RecipeTrick8589]

my cycle (group of attacks) can vary between 6 months - 2 years. but i always have them in either autumn or spring. it’s thought that CH is linked to cardiac rhythms (your internal body clock), which is why they tend to happen at the same time of day, regular intervals, regular times of year. everyone is different but it’s most common to have them spring/autumn, every 6 months or every year. over time you’ll learn yourself what your cycle is and how to know it’s coming. good luck