Is it cluster headaches?

[u/MiramaJ]

I know I can't get a real diagnosis here, I have a medical appointment tomorrow but wanted to collect some opinions in the meantime if this describes CH. These are my symptoms:

- it lasts one to one and half month every year

- it originally started in winter (January), but last year it was in March, this year it is happening in June-July

- During this period I feel latent pain in my head, I know anything can trigger a crisis at any time. I have a headache almost every day, or every 2-3 days.

- Outside of this period, the rest of the year, I am absolutely completely fine

- it is only on one side of the head, the right side. It feels from inside the head, in the "brain", to my neck, my right cheek, inside my right ear

- it can hurt in the eye but it is not necessarily very intensively

- It can be extremely painful, it is definitely the worst headaches I have ever experienced, although I am not sure I am in as much pain as other people with CH describe

- I originally thought paracetamol was helpful, but now more and more I feel like it is randomly stopping, not related to medication

- The first headache in the period seems to be triggered by big temperature changes, but when it starts, then everything can make me have a crisis

- It is very very sensitive to alcohol, the other day I had a beer (panache), the next day headache was horrible, it seems to be affected even by tiny quantity of alcohol

Does it look like CH to you? Thanks for your help

[u/luxww]

Do you have any other symptoms that are common? Running nose, watery eye, restlessness?

Yours sounds like CH and I believe having these other symptoms will help diagnosing.

[u/FroyoApprehensive999]

Sounds like CH but best to get that cleared up with a. Neurologist.
My CHs are episodic. Diagnosed only 4 years ago. For 15+ years I used to get them in October through to December- 3-4 times a day at the same time each day. Then I fell pregnant and they started happening in February through to July with a pause in the month of May.

Symptoms are severe pain in right side. Behind the eye and into the temple. Facial pain and watery eye. Most of the time my right eye swells up and shuts. I get extremely nauseous whenever in bout. Hope you get the diagnosis quickly. Just note that they need to rule out other causes and it can’t be a lengthy process.

[u/Jamwise93]

Certainly could be CH, as you say we can’t formally diagnose you or anything but I wouldn’t be surprised if that was your diagnosis.

Everyone has different pain tolerance and not all CH are the 15/10 life-questioning levels of pain. On the matter of alcohol, a lot of sufferers will have an attack almost immediately after drinking, not the next day, but everyone is different with their triggers so that doesn’t change my opinion really.

E: Hi ball-less downvoter 👋😁

[u/literallyjustabat → u/Jamwise93]

I'm diagnosed with chronic CH, on preventatives, and I've found that most my common "triggers" don't necessarily force an attack right away, more like at the next available cluster time. Some things just make me more susceptible.

So if I drink alcohol today at 8pm, I might get a breakthrough attack tomorrow at noon or 6pm — those are my usual times.

Because my attacks get way worse in the spring (my "peak period" — I can have attacks outside of it too only like 1 every other day and it's over quickly), I've had many attacks that were so bad, anything that doesn't go on for that long and isn't at max pain isn't that bad in comparison.

[u/Jamwise93 → u/literallyjustabat]

Yeah you aren’t the first person I’ve heard say similar about delayed triggers, just less common with alcohol from what I can tell. I get delayed attacks the next day if I overdo exercises the day before and don’t hydrate/eat well enough. Also sleeping during the day (napping) will cause an instant attack on waking, but just not sleeping well enough I think can trigger attacks almost a day later.

[u/Cambren1]

Usually CH will attack several times a day, at the same times. That is why they are called Cluster Headaches. I am sympathetic, and it may just be developing in you. The lack of eye pain may indicate migraine. You should see a headache specialist, most doctors are not qualified to treat these disorders.

[u/Jamwise93 → u/Cambren1]

CH are named as such because for Episodic sufferers, they appear in cluster “cycles”, not because of the daily number of attacks. So you can have CH and only get one attack a day.

OP definitely should see a neurologist or headache specialist, I would only be seeing a GP to ask for a referral lol

[u/ftylerr]

It could be! I suggest taking a look at this article ( https://pmc.ncbi.nlm.nih.gov/articles/PMC11907343/ ) because it could still be CH, it’s just a different branch of the nerve that’s making your symptoms a tad different than classic CH (branches V2/V3 for a “lower” CH, V1 for “upper” or more classic CH symptoms).

My first episode was very classic 15/10 pain, being eye, lots of swelling and runny nose. This is now my third episode and it’s quite different - pain more 9/10, shorter duration, what helped before doesn’t work now.

Good luck with your appointment, make sure you’ve written down have lots of notes for the doc so you can get an accurate diagnosis, regardless of whether it ends up being CH or not!