Gang,

I need some help validating diagnosis of either Cluster or Hypnic headaches.  Or at least what you think of these symptoms and if they sound like cluster headaches to you.

I've been diagnosed by GP with cluster headaches, and with hyphic headache by my neurologist (which he says is a type of cluster headache but I'm unable to confirm this?).

Here is what happens to me

They start up typically after the clock moves back and it's dark by 5.  December or November time frames.  Current one started about Dec 2nd or 3rd. 

I always know it's coming because my right front canine tooth will begin becoming extremely sensitive to cold.  As if I was biting ice cream.  I also get a "taste" on the back of my tounge similar to testing a 9 volt battery just not as intense.  Then it will begin to burn and hurt in my right nostril when I breath in air which suddenly seems really cold.  I often cover my nose and breach hot air into my hand as a result.  From there it moves up to my right temple which is pretty painful.  On the Kip scale mine are usually between 3 and 7, but thankfully more often on the lower side of the scale.  Once it's in full swing I have to be moving like shaking a leg while I am laying down, or pacing.  I often like to sit in the tub because I find the noise of filling it fairly soothing.  It seems to then come in waves where it start at the low end of the scale and move a few pionts higher then back bunch of times, and eventually those fade and then I finally go to sleep.
It happens almost always at night, and occasionally wakes me up out of sleep and it's in full swing.  (Fucking sucks). 
Once it starts in a "cycle" it's almost always at the same time
Drinking alcohol will almost always set it off so I haven't had a single drop in a few years.  Occasionally I get away with it but it's not worth the damn risk.
So far best treatment has been hitting it with methylprednizone.  It almost always stops immediately in days 1-3 of the pack, but this time returned at the end of the pack.  I did 3 packs in a row, but it's always come back in the last day of the pack.  I'm currently trying indomethacin to see if I can stop it that way.

Also, I grind my teath at night which my dentist thinks its TMJD.  I agree I grind my teeth but my headaches typically come when I'm awake, which is why I disagree with the hypnic headache diagnosis.

One side only, the right one.  Attack length is 45 min to 2 hrs.

Thanks guys.  Yeah I didn't expect anyone to actually diagnose, I was more curious if anyone had similar symptoms to these.  I'm in Chicago area.  I do have an appointment coming up with a different neurologist for a 2nd opinion, so I'll let you guys know what I find out.

m7_b5 wrote on Dec 20^th, 2017 at 11:35am:

One thing you can do to help your new specialist a lot is to start keeping a headache journal listing the time of each hit, duration, kip-level, what you were doing at the time, what you'd eaten, all that sort of thing.

It's surprising what can come out of such an exercise.

Then also make a list of all the questions you want to ask and remember to take it with you. (I left mine at home every time.)

Good luck and let us know how you're getting on.

Also remember that the definitions aren't perfect but are there to set reasonable limits on what the symptoms are to map to a given headache type.

For example, the CH definition includes duration limits of between 15 and 180 minutes. But if you had a "CH" which lasted 14.5 or 181 minutes it would still be a CH. But if it was say 6 hours then it is likely to not be or there may be other factors at work too.

People can have multiple headache types active at once, which really makes it complicated, needing people with the right skills, etc.

Good to get the diagnosis confirmed after you've found a much better neuro for you.

A 20mg month long prednisione dose is relatively long. The more common approach is to start about 70 or 80mg a day and then to taper down over 7-10 days. But she will know your full medical history and what is likely to be best for you.

Verapamil typically takes 7-10 days to take effect. The dose of 120mg a day is relatively low for CH, with most people taking 360-480mg a day and some to 1000mg a day. But again she has your full medical history.

Has she given you anything to abort a CH when you get one? Something like imitrex injections / nasal spray or oxygen? These can help get you CH pain free in 5 min or so, which is a whole lot better than riding out a CH even at relatively "mild"

Are you in the UK? If so have a good look at the OUCH website - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or . They also have a phone helpline.