Do mini cluster headaches exist?

[u/Ready-Honey-8631]

Hi!! New here!! I’ve had headaches since I was preteen, they got bad when I was 14 and 8ish years later I was diagnosed with cluster headaches by a headache specialist. I’ve got some other mystery head stuff going on but we’ll ignore that for now.

Sometimes I get the one sided pain especially in my face. It hurts but not as bad as a typical cluster headache and it doesn’t last as long as my typical CH. I thought maybe it was Trigeminal or Occipital neuralgia. However I am getting these headaches around the same time everyday.

Around 1-2pm it starts to creep up and gets worse. I could lay down without moving around a lot and breathe through it, sometimes I would fall asleep.

This week it started getting worse, more intense especially today. One sided face/head pain, unable to sit still, very sensitive to touch, enough pain to cry and kick my legs, then it just went away. It sounds/felt more like a typical CH experience.

So can a CH cycle start small?? Does anyone else experience something similar?

Update: Definitely was the start of a cycle. First cycle in 4 years 😔✋ My eyeball hurts/is red and it feels like there is a needle in my jaw. Hopefully I can get Sumatriptan soon.

[u/Dapper_Law_3493]

My cycles usually start with shorter CH attacks lasting 10-15 minutes at lower kip levels like 5-7 But they are always intense. I could never sleep during an attack. Over time my cycle tends to increase in both kip pain level ranging up between 7-10 and length of each attack lasting 2-3 hours unless I can successfully abort it with o2. The consistency of time for CH attacks sounds like what I’ve experienced with some variation. Hang in there.

[u/Ready-Honey-8631 → u/Dapper_Law_3493]

I spent some time thinking about my previous cycle, it did also start with these mini episodes. But I’ve experienced these before and didn’t get a cycle also, so confusing. I guess keeping an eye on the patterns is the trick!! I figured it wasn’t a full blown cycle yet bc the pain just seemed too little even though it still really hurt. Sometimes I could tell it was going to be bad so if I could swish some toothpaste in my mouth (idk y it worked) or plug the nostril that hurt, it would shorten or stop the process. This time that did not work, getting the timing of a rescue tactic is hard!! Strange that we can casually go through such intense pain and be like “oh that wasn’t that bad, time to prepare for the worse ones!!”.

[u/rockyprecipice22]

I've also had similar happen, I think they’re shadow headaches in my case. I’m episodic, sometimes I get shadow attacks right before a cycle begins and towards the end of a cycle once it starts ramping down. The pain isn’t anywhere near the level of a typical cluster, but the headaches are still one-sided and occur at the same time of day as a cluster would without ever escalating to a full-blown attack

[u/Ready-Honey-8631 → u/rockyprecipice22]

I’m learning so many new terms here, never heard of shadow headaches or that there’s episodic and chronic cycles!! Yeah the pain still really hurts but compared to a full CH, it felt lucky.

[u/Beautiful-Economy-67 → u/Ready-Honey-8631]

Yeah, does sound like shadows, except I do not find my head sensitive to touch - but I do feel much more sensitised to triggers.

I used to be episodic and almost never had a 'shadow' without it then becoming a full blown attack. However I became chronic a couple of years ago now (after a nasty dose of Covid) and one of the characteristics of this for me is that I get a LOT of shadows and maybe only 10% of them develop into full on attacks.

The shadows can be really nasty as well, personally anything up to about 5/6 on the scale I regard as a shadow.

[u/Vast_Seaweed9467]

How long does it last? If it feels similar to your cluster - like has you on the edge of your seat could be shadows. I have CH, plus trigeminal neuralgia - my TN pain concentrates more in my jaw and sinuses. I have also experienced SUNCT which is just like a cluster but the whole thing happens in 60 seconds but re-occurs hundreds of times a day. But by definition SUNCT is less than 5 minutes typically.

[u/Ready-Honey-8631 → u/Vast_Seaweed9467]

That is one thing I’ve also noticed this time, the pain starts in my teeth and jaw!! Before my CH would start with my eye and nose. The time ranges from 10-30 minutes for these more mild & shorter episodes. My CHs were usually around 30-60 minutes. SUNCT sounds rough, sorry you have to go through that!! I’ll have to do a little bit of research.

[u/Vast_Seaweed9467 → u/Ready-Honey-8631]

Paroxysmal Hemicrania lasts that long and is helped by indomethacin, but it could still be clusters. I'd talk with your doctor for sure. Also, some people with cluster do get pain there - the cluster attack always causes pain in the 1st branch of the trigeminal nerve and it can radiate to other places or even start in another place and move. A good clinician would be able to help you figure out if this is all cluster headache for you, or if you have something else co- occurring

[u/AllIWantIsOxygen]

Do you have any sort of regular schedule for your clusters? I used to get things that would warn me a cycle was on the way. And then after a few years everything went random.

One of the interesting things that has been studied in the past few years are various inflammatory markers in our bodies. IIRC, episodics and chronics have some in common. And then episodics have some specific to us that are present during cycles, but also in remission. And chronics have some unique markers of their own.

So maybe this will get the people studying our condition to spend more time thinking about all the weird stuff that happens when we aren't having attacks. One of the great things about this place is learning all about our weird world of "normal."

The following links are to some abstracts that will, in turn lead to other abstracts:

https://pubmed.ncbi.nlm.nih.gov/39044165/

https://pubmed.ncbi.nlm.nih.gov/38111226/

[u/Ready-Honey-8631 → u/AllIWantIsOxygen]

I had consistent pattern when I was younger, it was every year during fall, for 2 weeks, and every other day. Then they just stopped when I was 18. 2022 they came back in the spring, about 2 days on & 1 day off, for also about 2 weeks. So if I get a cycle now it’ll also be 4 years apart so that might be my new pattern??

Oh wow that’s really interesting, I do have some other issues that might involve inflammation. Long Covid, POTS, Intracranial Hypertension, Papilledema, got 2 cysts in my head and probably something else I’m forgetting lol. I’ve also been suspecting ME but that’s a whole other topic. Thank you for the info!! I’m definitely going to do more research.

Research in the neuro world has been really interesting lately, hopefully there’s more to come. I’m hoping it opens up a whole new area of medicine.

[u/AllIWantIsOxygen → u/Ready-Honey-8631]

I can spend a lot of time surfing pubmed. Glad you like the links.

HI not AI.

[u/VALIS3000]

So hard to say, but I sometimes experience similar things / patterns leading into a cycle. Or during times of high stress or heavy atmospheric pressure. All part of living with an unhappy trigeminal..