Hey everyone,

First time posting here.

I have been dealing with an undiagnosed intractable head pain for 2 years now that due to some recent events has me leaning towards cluster headaches and I want to see if anyone can offer some insight.

In January 2016, I started to get the absolute worst headaches I have ever had in my life. Always on the right side, around my temple and eye and they would last for somewhere between 30 mins to an hour. I didn't pay it any mind till they started to get more frequent, every 3 days, then every day.
The strangest thing about it though was that what started to happen was between the bad headaches there was always a lingering of pain between that would never go away.

I'm going to cut through the entire insane saga and just say what eventually happened was the bad daily headaches stopped but the constant pain lingered. The pain would just sit on the right side of my head, never fully disappearing. It could blow up into a full on headache that could last for hours, or just sit there as a shadow. It could feel like a pressure or fullness in my ear or a weight over my eyelid. I spent the 2 years seeing neurologists, ENTs, Pain Doctors, etc. Trying different medications with no relief and no real diagnosis.

I never would have contributed the initial cause to a cluster period except now, 2 years later, in April of 2018, I'm experiencing the same exact thing that set the whole thing off and I can't believe I didn't realize that it's a cluster period! They occur at the same time, wake me up from sleep, attack my eye and brow etc.

What I am wondering is has anyone heard of a first cluster period setting off something else like a constant pain or triggering another pain condition, or is this possibly a chronic cluster headache diagnosis (the lingering pain did mimic the cluster in some ways, but not in intensity). This time around, I do have triptans that can cut the intensity of the attacks in half, but they are still absolute torture, and i can't take them that often.

Looking for any insight. Thanks

I know that in between individual headaches I'd always have that constant, dull pain in the same area as though it was bruised  (maybe it was).

Given that my cluster cycles commonly went out with such a helluva bang this  'bruising'  would often persist for months afterwards.

Never enough to complain about but a real pain in the  [head].

The standard diagnostic criteria for a CH diagnosis can be found at - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or .

At least five attacks fulfilling criteria B-D
A)Severe or very severe unilateral orbital, supraorbital and/or temporal pain lasting 15-180 minutes (when untreated)1
B)Either or both of the following:
at least one of the following symptoms or signs, ipsilateral to the headache:
  – conjunctival injection and/or lacrimation
  – nasal congestion and/or rhinorrhoea
  – eyelid oedema
  – forehead and facial sweating
  – miosis and/or ptosis
C)a sense of restlessness or agitation
D)Occurring with a frequency between one every other day and 8 per day0
E)Not better accounted for by another ICHD-3 diagnosis.

Ticking off A-D isn't too hard, but it is E that is the really tough one as it involves ruling out every other possible cause.

Hemicrania continua - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

This one sounds similar, but indomethacin should have ruled it out.

Look through the IHS site. I'd be tempted to build up a spreadsheet of options you can rule in / out based on your symptoms, but don't rule out the possibility of you having more than one headache type active. Hopefully this will cut the list down to a manageable size. Then this could be used to talk to the next person you see?

With my CH, before I was diagnosed and then before I got effective abortives, so I was faced with riding out a 45-75 minute CH, I remember my head just hurting afterwards as it felt bruised and abused. Getting the ability to abort with O2 / sumatriptan injections really helped with that.

Another thought, look at the IHS website and see just how many headache types there are. Maybe you've got something new, which might explain why all the headache specialists haven't got a diagnosis yet?

Quitting smoking isn't likely to impact CH directly, other than it can help avoid some medical conditions that mean you can't use triptans. But it is a healthier choice anyway.

For medications, did this include strong opiate medications? So not just codeine, but stronger ones?