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.

I'm not a Doctor. Some of what you said sounds like cluster. But some does not. How long do the attacks last? One side only? If you have Cluster Headaches, Indomethacin won't help.

Here's our "Cluster Quiz" for a start.
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One side only, the right one.  Attack length is 45 min to 2 hrs.

G'day, welcome, and all headaches are horrible. 

One thing we won't do here is try to diagnose one headache syndrome from another but the good news is that we'll do everything we can to steer you in a good direction.

There are many, many types of headaches and it takes a real expert to pick just which one has chosen to attack you.  Some of these headache types are a terrible nuisance while others can actually be life-threatening, and this is why we always recommend you find yourself a proper specialist to get a genuine diagnosis. 

Once you've got that there are just so many treatments and therapies available and you've a seriously good chance of returning to a full and productive life.  The priority, though, always depends on getting a proper diagnosis and the average doctor and even many specialists aren't really up to the task.

Give us an idea where you live and perhaps we can point you in a good direction but in the meantime I can promise you're very welcome here.

All headaches are horrible and you're now among friends who understand so please stay in touch.

We care.

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.

The IHS (International Headache Society) publishes the standard diagnostic criteria for headaches.

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Quote:

Description: Frequently-recurring headache attacks developing only during sleep, causing wakening and lasting for up to four hours, without characteristic associated symptoms and not attributed to other pathology. Diagnostic criteria: A. Recurrent headache attacks fulfilling criteria B-E B. Developing only during sleep, and causing wakening C. Occurring on ≥10 days per month for >3 months D. Lasting ≥15 min and for up to 4 hr after waking E. No cranial autonomic symptoms or restlessness F. Not better accounted for by another ICHD-3 diagnosis.

The last point, F, is the hardest to confirm and it is why we recommend that people see a headache specialist as most GPS, even most neurologists don't have the skills or experience in this area.

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Quote:

Description: Attacks of severe, strictly unilateral pain which is orbital, supraorbital, temporal or in any combination of these sites, lasting 15-180 minutes and occurring from once every other day to eight times a day. The pain is associated with ipsilateral conjunctival injection, lacrimation, nasal congestion, rhinorrhoea, forehead and facial sweating, miosis, ptosis and/or eyelid oedema, and/or with restlessness or agitation. Diagnostic criteria: A. At least five attacks fulfilling criteria B-D B. Severe or very severe unilateral orbital, supraorbital and/or temporal pain lasting 15-180 min (when untreated)1 C. Either or both of the following: 1. at least one of the following symptoms or signs, ipsilateral to the headache: a) conjunctival injection and/or lacrimation b) nasal congestion and/or rhinorrhoea c) eyelid oedema d) forehead and facial sweating e) forehead and facial flushing f) sensation of fullness in the ear g) miosis and/or ptosis 2. a sense of restlessness or agitation D. Attacks have a frequency between one every other day and 8 per day for more than half of the time when the disorder is active E. Not better accounted for by another ICHD-3 diagnosis.

Again point E is the hard one to confirm.

With the first, the main differences to CH are around the lack of restlessness and the only during sleep.

But as others have said, we can't diagnose. That needs a doctor with the appropriate skils and experience.

As Brian puts it so well, all headaches are horrible, so hopefully you get a confirmed diagnosis soon as that kicks off the right treatment for you.

Keep us updated on how you get on.

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

I do have an appointment coming up with a different neurologist...

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.

Great points.  Based on the diagnostic definition I'd say it's not Cluster or Hypnic, but you guys are right it has to come from a real professional.  Self diagnosis isn't worth much if anything.  Hopefully the new neurologist will have some ideas.  My current neurologist dodged the question about why is it hypnic if they happen when I"m awake as well. 

I will keep that headache log.  That may be useful!

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.

Well, I met with the 2nd Neuro last week.  I was far more fond of her than the current Neuro, just in terms of thoroughness, attitude, and bedside manner.  I am going to keep her as my Neuro and stop seeing the other guy.

After giving her an exhaustive list of history and symptoms she agrees with my GP that this is cluster headaches, but I'm lucky in that the pain level, while bad, isn't as bad as other people afflicted with the condition.  I'm also lucky that my headaches strike only late at night (99.9% of the time) and last only 2 hrs, getting only 1 per day.

Current treatment plan is to take Prednisone 20mg for 1 month as a bridge medication while also taking verapamil (120) in the hopes of it having an effect on reducing the cycle long term.

News Year Eve turned out to be one of the worst ones I have had in a long time.  My wife and I were watching the 2nd Hobbit film and I got a quickly onset really painful episode.  The new thing here was that this one came with the watery eye on the side of the headache which is unusual for me.  Hurt like fucking hell.  We didn't end up being able to finish the movie and I spent until 2 am in the tub shaking until it subsided enough to allow me to sleep.  Rarely does it seem that when they depart I get a total relief anymore.  It used to.  Now it's like it just dials down from "High" to "very low" on the pain scale which is enough for me to pass out.

This condition blows.

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 - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. They also have a phone helpline.