Hi there

So I know no one here can diagnose a cluster headache and I do plan on seeing a headache specialist soon but I was hoping someone could let me know if they have had any similar experiences.

4 days ago at night I had an unbelievably painful sebsation begind my right eye that lasted for around 40 minutes and moved around the face down to my neck and temple. The pain was worse than anything I've ever felt before.

This led me to look at what it could be and it sound similar to a ch. since then I have had a full pain which has come and gone but the when the pain has been bad it still isn't anywhere near the first attack. I also haven't been woken up at night to a ch but the ch quiz was about an 8 out of 10 match.

What I'm asking is has anyone had a cycle that was a kip 9/10 and then every other attack wouldn't get higher than a 5 or 6? Or do they always get to a level that is extremely painful?

Any response will be greatly appreciated.

CH can be pretty variable and especially at first it doesn't always follow the classical CH symptoms which can make it hard to diagnose, which is why we always direct people to a headache specialist.

For your question, yes it is possible, but for you that doesn't help as the only thing that matters is getting the correct diagnosis from someone qualified to give it.

Sorry that doesn't help too much as I know how much you'd want some kind of answer.

G'day Matty, and all being well you've just picked up a little allergy, a sinus problem, or any of a hundred little critters that can give you a horrible headache.

Just in case, start keeping a headache journal with all the details of headache times, duration, intensity, weather, what you'd just eaten, and whether exercise helps or hurts. This will help heaps towards a true and honest diagnosis.

All headaches are horrible and you're right to seek answers.

For me It"s a mix of high and lows


Mark.

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Variability in the experiecnce is common, sometimes making it impossible to even describe it as a headache. My Clusters started with weeks of a vague distress that I would have thought that some kind of GI upset was emerging. Took about 6-months before a clear Cluster picture emerged.

Even with established cases, the actual presentation may wander around--pain in different locations or in multiple sitees.

This is one reason the initial diagnosis is often wrong and/or an unskilled doc being mislead. Shows up with people having teeth pulled because the initial presentation was consistent with an infection.

So, don't be concerned about wandering sypmtoms. Do keepa record by location, inensisty, changes, etc. May help the doc.

In anticipation! You may write back in months or years about meds which have been effective suddenly not working. Not unusual but is confusing! Response: start over again trying new meds/combinations to find an effective fix.