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(Message started by: msussman on Jan 28^th, 2004, 2:47pm)

Title: Potential Cluster Newbie.
Post by msussman on Jan 28^th, 2004, 2:47pm

Hiya Folks. Potential cluster newbie here, possibly to join your ranks.

Lemme give you the rundown. Male, 27, enjoying a wicked left-sided headache almost every day for the past 3 weeks. Ipsilateral tearing, nose stuffiness, neck soreness, occasional nausea, occasional dizziness. Tylenol does nothing, Ibuprofen does little except for the very mildest of headaches, and even then there's still tearing and still feeling kinda, well, debilitated and stupid.

I've had very similar episodes which lasted a few weeks about two years ago, and again 5 years before that (though there were some photophobic qualities to that earliest episode which I haven't really had since). I've always sort of assumed they were just terribly bad tension headaches, since there's always associated neck tension and soreness during the episode, even when I'm not actually experiencing a headache. I also get a sort of "garden hose o' pain" effect...I push hard on the area of the neck that hurts (roughly just to the left of the second vertebrae), and it temporarily quiets the pain around the eye.

Two years ago, operating under the premise of bad tension, I finally went to go see a chiropractor. After several unsuccessful sessions, he pulled out the big guns and did a little acupuncture. A few days later, the headaches were gone, although in retrospect I can't say if it was strict cause-and-effect, or just concommitent events.

Fast forward to 3 weeks ago. I started suddenly experiencing "those headaches I used to get". My first thought was to get acupuncture again, this time to no avail.

Last Sunday was one of the worst. I woke up around 10 AM with a Kip scale of 6, which quickly increased to an 8.5...I was convinced something was gonna pop. After a couple hours, several Ibuprofen, and a bit of obsessive rocking it was down to a 5 or 6, but still definitely stupefyingly there. I went to go see my friend, a massage therapist, who did some lovely stuff to my neck, but I still had a lingering headache late into evening. What finally killed it, oddly enough, was a shot of espresso (vasoconstrictor, anyone?). I finally gave in and made a doctor's appointment. I'm one of these people who usually won't see a doctor until, say, I notice one of my limbs happens to be missing. After Sunday's fun, though, I decided to get it checked out.

I went to see my doc yesterday. He quickly ruled out some more obvious sources (sinus, tension, intracranial pressure), and given my symptoms, arrived at Clusters as the cause. This seems a lot better than a couple of the horror stories I've since read on this board where docs won't even acknowledge that CHs exist, only further strengthening my belief that I've got a really excellent doctor.

The conclusion is that I have a few sample packs of Frova (much like Imitrex, a serotonin receptor agonist, but apparently better at targeting neurovasculature). Next time I get a bad headache, I'll take some...If it goes away, super, at least I know what it is. If not, well, I'll get an MRI and we'll take it from there.

Of course, the ironic part is that I haven't had a headache since Sunday. For the first time in 3 weeks, it's been 3 pain-free days, with only a hint of a shadow now and again. Either the episode has simply run its course and is now over, my friend's massage did the trick, or the changes I made to my diet since Friday (totally vegan, no wheat) have made a very positive impact. I'm simultaneously thankful that they're over, and yet a little disappointed that I haven't conclusively nailed down their cause.

The weird part is that I have some significant differences from your usual CH fellow, which has caused me to question my possible diagnosis:
- I rarely if ever get more than one headache a day
- the very worst ones can last up to 10 hours
- They only wake me in the morning
- the pain is less a sharp stab and more of a really severe slightly fluctuating pressure,
- no Horner's syndrome, though a lot of eye/nose runniness.
I also don't seem to get to the 9 or 10 on the Kip scale (for which I'm thankful), though the idea of clawing my face off has occured to me now and again. My doctor is quick to point out, though, that both migraines and CHs are a lot like snowflakes - no two people experience them quite the same. If anyone has any theories of alternate diagnoses, or experiences "similar differences" from classic CHs, input would be appreciated.

Thanks,
Mike.

Title: Re: Potential Cluster Newbie.
Post by thomas on Jan 28^th, 2004, 3:03pm

We all have different ways of describing our pain, and I do believe it can be different for all of us.......... welcome aboard, cool site by the way.

Title: Re: Potential Cluster Newbie.
Post by echo on Jan 28^th, 2004, 3:07pm

on 01/28/04 at 14:47:35, msussman wrote:

The weird part is that I have some significant differences from your usual CH fellow, which has caused me to question my possible diagnosis:
- I rarely if ever get more than one headache a day
- the very worst ones can last up to 10 hours
- .

Does the headache last for the entire 10 hours? If so, I'd question it being CH. A series of numerous headaches that eat up 10 hours of your day is a differenct story.

Some are triggered. Have you noticed anything common with what you have been doing, eating, prior to onset?

Title: Re: Potential Cluster Newbie.
Post by cathy on Jan 28^th, 2004, 3:08pm

Hi msussman....welcome aboard, normal clusterheadaches don't last 10 hours, however maybe you have a combination of migraines and clusters...? either way I hope you get a firm diagnosis.

Cathy :)

Title: Re: Potential Cluster Newbie.
Post by bothofus on Jan 28^th, 2004, 4:23pm

Welcome ! I tend to agree with the crowd here. Maybe you have both, clusters and migrains. WOW !
I can tell you that there is NO WAY I could go more than an hour with a cluster without doing something radical. Your 10 hr episode has bound to be a migrain, of which I am not making light of, it's just that if it was a cluster you surely would have broken the door down at the ER entrance to get some relief. I'm not joking here either. Check around the site for some more useful info and some other opinions. Great bunch of people here !

Title: Re: Potential Cluster Newbie.
Post by pubgirl on Jan 28^th, 2004, 4:28pm

Sorry to disagree with you bothofus, but there is no certainty at all that it is migraine.

Mike,

I suggest you have a read up on the differential diagnoses of the headache types as your symptoms also suggest NCDH (New Chronic Daily Headache) as well as a possibility of a migraine/cluster combination. I get both, but also suggest that if the 10 hour one is a migraine, it is very likely Frova (another Triptan) should see it off. If Triptans don't kill it, it might well not be migraine .

Keep us posted on what happens

Wendy

Title: Re: Potential Cluster Newbie.
Post by pubgirl on Jan 28^th, 2004, 4:33pm

Mike

This might help:

Primary new daily persistent headache:

Initial descriptions of primary NDPH recognised it to occur in both males and females. Migrainous features are common, with the pain being described as either a unilateral headache or a throbbing headache. Nausea has been reported as has photophobia and phonophobia. New daily persistent headache (NDPH) is a clinical
syndrome that identifies patients who were previously headache-free and who, from one day to the next, or over just a few days, develop a persistent headache syndrome. NDPH has both primary and secondary forms and all patients with NDPH need a careful history for medication misuse, particularly of (OTC) over-the-counter medicines.

Important forms of secondary NDPH include cerebrospinal fluid (CSF) pressure abnormalities, either raised CSF pressure or low CSF volume headaches; these need vigorous diagnostic pursuit. Primary forms of NDPH either have exacerbations that fulfil diagnostic criteria for migraine or are dominated by featureless (tension type) headache.

Primary NDPH is best treated with preventative medications as one would treat the phenotypic presentation of the headache—that is, as chronic migraine or chronic tension-type headache.

Sources: P.J Goadsby (et al) - Journal of Neurology, Neurosurgery & Psychiatry

Wendy

Title: Re: Potential Cluster Newbie.
Post by chronic_chic on Jan 28^th, 2004, 6:48pm

Hi Mike,

My best advice would be to get thee to a headache specialist as soon as possible in order to truly figure out what type of headache you have. The protocols of treatment for different headache types to overlap some, but there are also some major differences and the first key to finding a successful treatment plan is to truly find out what type or types of headache you suffer from.

Of the chronic daily headaches, most of them are continuous in nature, however for 3 out of the 4 types there is an allowance for some pain free time. However, the headache must be present greater than 15 days/month and for more than 4 hours a day. Sounds like yours are. Hemicrania continua is the only type of CDH that states the headache is continuous, but it can have the stabbing like features of clusters. Also, tearing and congestion on the side of the headache is very common for this type of headache.

I have the NDPH with migraine mentioned above, and my headache has been continuous for 3 years. I get clusters on top of this, which are a distinct headache type and difference for me. A general criteria for cluster attack length is between 1-4 hours, but I suppose variations are always possible.

Clusters can also trigger migraine attacks in those who suffer from both conditions. This could explain a cluster that seems to last for 10 hours. Perhaps it is a cluster triggering a migraine for you.

I would recommend keeping a very accurate "headache diary" of exactly what times of day your headache begins and ends, associated symptoms, what medications you use to try to abort it, and any triggers you notice that could be bringing on the headache. This can be very useful for headache specialists when diagnosing a headache condition as there are so many types of headaches and individual variations within each type.

Best of luck to you! Achieving a proper diagnosis is often a big part of the battle, and at least once you know, a treatment protocol can be designed for your specific needs. Take care!

~Lizzie :)

Title: Re: Potential Cluster Newbie.
Post by msussman on Jan 28^th, 2004, 7:20pm

I should be clear here, the ten hours o' pain I had on Sunday was not a constant white-knuckler the whole way through - there were definite ups and downs, but no total release from the pain until 10 hours later, which was complete and cathartic. Moreover, it was done through caffeine, which sounds like a vascular thing (though the jury is still out on that one).

I have done a fair amount of research on headache types at this point...While mine do seem to last longer and be somewhat less painful than "true" CHs, I can't find another type that's unilateral, causes eye-tearing, and comes in several-week clusters every couple of years. Question: Is it possible to have "ordinary" unilateral migraines that occur in cluster-like episodes?

I also just did some pubmed searches on the NDPH you mention, pubgirl, and there are a few things that don't quite fit here:
-"patients who were previously headache-free" (see my original post re: 2 and 7 years ago)
- NDPH's "duration of daily headache ranged from 1.5 h to 24 h; 79% were continuous." Mine, while longer lasting (median about 3 hours or so) are certainly not continuous.
- NDPH is considered a subset of CDH, which by definition has to last longer than 6 months.
- Also, the incidence seems to be highly correlated with patient fatigue - something I haven't really noticed. I do really appreciate the help you've done in pointing me to this research, though.

Thanks,
Mike.

Title: Re: Potential Cluster Newbie.
Post by Prense on Jan 28^th, 2004, 7:27pm

Mike,

I have had shadows last longer than three hours, but never a single CH attack.

I honestly hope that you do not have CH, but I do hope you get a good diagnosis...

Either way,

Welcome aboard!

Chris

Title: Re: Potential Cluster Newbie.
Post by River_Rat on Jan 28^th, 2004, 7:29pm

on 01/28/04 at 16:23:25, bothofus wrote:

I can tell you that there is NO WAY I could go more than an hour with a cluster without doing something radical. !

Touche'

Welcome aboard, I had pain for entire days before, but they were just clusters/shadows/clusters

NORM

Title: Re: Potential Cluster Newbie.
Post by chronic_chic on Jan 28^th, 2004, 7:33pm

The actual criterion on the NDPH as recognized by IHS is that you CAN have suffered from headaches before, but they can't have led up to the NDPH. The headaches that you suffered from before can be episodic tension-type headache or episodic migraine headache. I suffered episodic migraines from age 8 until age 20 when I got the NDPH. However, there was no increase in migraine frequency that led directly to the NDPH. I would have to agree with you that it doesn't sound like a CDH type if you don't have it continuously or at least for most of the day for over a certain period of time, but this period of time differs for the various CDH subsets. For transformed (chronic) migraine and NDPH, you have to have it for greater than one month. For CTTH (tension type), you have to have it for over 6 months.

Some variations on clusters that you may want to consider looking into: Chronic and Episodic Paroxysmal Hemicrania, S.U.N.C.T., hemicrania continua, clusters (of course), and hypnic. Hypnic headaches are relieved by lithium and caffeine. I don't know if you'll find a lot in the literature on them as they are a rare headache type.

Just some more thoughts on the headache types. :)

~Lizzie:)

Title: Re: Potential Cluster Newbie.
Post by bothofus on Jan 28^th, 2004, 9:54pm

That one hurt pubgirl. When I said definitely migranes, maybe I should have said might be migranes.
I am sympathetic to anybody in pain of any form and I said I didn't want to make his/her headaches seem unworthy. That's not my style.
One thing I DO know is the pain of a cluster, and I stand by my statement of not being able to go through one for more than hour, without taking drastic measures. I have had shadows that lasted for quite a while, but a true cluster is a killer.
I may be new to the board, but I am NOT new to the pain.

Title: Re: Potential Cluster Newbie.
Post by TxBasslady on Jan 28^th, 2004, 11:05pm

Hi Mike,

Welcome to the board.

You got lots of information already....so I will refrain from repeating.

I take the Frova. It doesn't seem to work for a lot of folks here. For me, it took a cluster from 1 1/2 hours down to 13-18 minutes. I also went on a Prednisone taper.....it stopped my cycle in it's tracks. That was 141 days ago. The Prednisone doesn't work for all either. Most report that their ha's return either at the down side of the taper, or a day or 2 after the taper ends. I have had no ha's or shadows since the 1st day I started the Prednisone. Only side affect was at the very end of the taper.....I had like an anxiety attack. The next day I was fine. We are all very unique with CH.

Hope you get what ya need to fight the beast.

PF vibes,

Jean

Title: Re: Potential Cluster Newbie.
Post by peteyg on Jan 29^th, 2004, 1:33am

Mine last an average of 3 to 4 hours, and I get 2 to 4 a day. Imitrix pils will get rid of it in 45 minutes every time. I also get migraines, but I never get them when I'm in a cluster episode.

A note on Docs...I fired mine yesterday. I finally went back to my old Dr. in San Diego. He's an hour and a half away from my house, but he understands clusters, and is very agressive in treatment. I didn't realize how good he was until I moved and changed Dr's.

Title: Re: Potential Cluster Newbie.
Post by Charlie on Jan 29^th, 2004, 2:48am

Welcome to the fold:

If you stick around you'll find some good ideas for dealing with this horror and support.

Sad to say, it sounds like clusters to me. One a day is kinda odd to me but there's nothing etched in stone. You confirmed that the ten-hour headache differed in severity. That works for me too. If these attacks have woken you of of a deep sleep, it's almost certainly a CH. Let us know if so.

Here's a link to the technique that helped me:

http://www.netsync.net/users/charlies/

Good luck and keep in touch.

Charlie

Title: Re: Potential Cluster Newbie.
Post by Mac on Jan 29^th, 2004, 3:03am

Hi Mike. One question. Do you wake up on a regular basis with a severe headache an hour or so after going to sleep? That is (in my mind,what little I have left) a major indication that you MIGHT have clusters. I seriously hope you don't have them. But if you do, welcome aboard. Glen

Title: Re: Potential Cluster Newbie.
Post by Geordie Chopman on Jan 29^th, 2004, 4:38am

Hi Mike

Like yourself, I'm new to this site but not new to headache pain in all its shapes and forms. I was diagnosed as having migraines way way back at the age of six or seven (now 38), so you could say I've come to know the signs of a migraine quite well (this is not to say that what I feel is the same as what anyone else feels and visa versa). It has taken me about five or six years of well spaced episodes of CH to recognise that I do also have the 'pleasure' of having CH. At this moment I am at the tail end of a CH episode which started before Christmas but which has been interspersed with migraines. For me both types of headaches have very similar symptoms - pain on one side, tearing, eye closure etc - the main differences, however, are not the level of pain but the duration of it migraines do tend to last a lot longer but the pain is not at a constant high all the way through, also with my migraines I do the classic of hiding in a dark room and resting (a form of calm meditation - very little movement), with my CH no way can I stay still - I pace up and down like a caged beast.

Draw what you will from this - not so much of advice more mutual experiences.

Take care and don't let the bastards grind you down!

Title: Re: Potential Cluster Newbie.
Post by 357Mag on Jan 29^th, 2004, 5:13am

Mike,

Sorry you had to find us, but welcome nonetheless.

quote from bothofus,
""I can tell you that there is NO WAY I could go more than an hour with a cluster without doing something radical. ! """

in response, have a look at my journal of this seasons cycle. You will note that one lasted 6 hrs. Thats right folks...6 damn hours without any abortives, pain meds...nothin. Nothin but the outdoor cold air, head bangin and pressure applied to the neck to stop blood flow and air flow thru upper sinus area. Damn, that one drained the hell outa me!

www.kdlltd.com/dans0304jrnl.jpg

But you know, after finding this site, and reading about what so many others are going thru, I don't feel so bad any more. I have learned 1 very valuable thing [of many of course] from my new found brothers and sisters....it could always be worse.

Wishing you many PF days,
-dan

Title: Re: Potential Cluster Newbie.
Post by Karla on Jan 29^th, 2004, 3:36pm

If frova doesn't work for you that doesn't mean you don't have ch or migraines. There are other abortives to try that you also have to rule out. Such as Imitrix, zomig, maxalt, axert, amerge and migranol nasal spray.

Title: Re: Potential Cluster Newbie.
Post by LouisJ on Jan 29^th, 2004, 3:53pm

Mike,

I hope you don't have ch, but if you do, then be happy that there are some proven means of controlling it -- for most of us, anyway. The trick is to find the right medication for you.

BTW: I almost always get to 10 on the kip scale, but some of the description of the scale do not fit me. I don't, for example, scream. When things get bad, I lay down in a dark and quiet room and watch all the lightning flashes inside my eyelids.

Good luck. You've come to the right place to find some ideas and for support.

--Louis

Title: Re: Potential Cluster Newbie.
Post by thomas on Jan 29^th, 2004, 3:55pm

on 01/29/04 at 15:53:03, LouisJ wrote:

watch all the lightning flashes inside my eyelids.

That's a new one for me???????? [smiley=huh.gif]

Title: Re: Potential Cluster Newbie.
Post by Prense on Jan 29^th, 2004, 5:48pm

on 01/29/04 at 15:53:03, LouisJ wrote:

When things get bad, I lay down in a dark and quiet room and watch all the lightning flashes inside my eyelids

This is coping with a cluster? Or am I misreading something....

Chris

Title: Re: Potential Cluster Newbie.
Post by Woobie on Jan 29^th, 2004, 6:51pm

Hi Mike

Check your PMs...

and whatever you do - DONT go to the Diamond Headache Clinic - it's a waste of time!

Welcome !!

Tina

Title: Re: Potential Cluster Newbie.
Post by msussman on Jan 29^th, 2004, 6:55pm

I've gotta say, even if my membership of the exclusive CH club is still in doubt, you folks are seriously supportive and understanding - and for that I thank you all very much.

Chronic_chic, thanks for the references to the other CDH headache types. I did a bunch of PubMed searches, but alas, none of those seem to fit. Paroxysmal hemicrania and SUNCT both produce even shorter lasting headaches than clusters, while hemicrania continua, seems, well, continuous. The hypnic dealie seems to only affect seniors during naptime, so it's definitely not that...

As far as the lying down during the headache thing, I usually want to lie down in a dark place until about a Kip of 6, after which I'm ready to just get up, obsessively rub my head/neck, or just kinda rock to-and-fro. No scotoma there, either.

As far as having HAs wake me up, it's never happened at night, only in the morning. In fact, I don't know that I've ever had a headache onset at night - if I don't wake up in the morning with one, it almost always comes in morning or early afternoon. Last week they were always coming around 11:30 AM, like clockwork...

The scientist in me is really starting to wondering if, given the multifarious ways in which even a single type of headache is experienced, there aren't just a greater number of subdivisions that have yet to be classified. (Oh yeah, forgot to mention the other really ironic part here - I actually work for an experimental neuroimaging corporation where we test CNS drugs. Hah.)

Well, this is my fourth day more or less without pain, so good news there. There were a couple times I was sure I was going to cultivate a fine one, both yesterday and today - occasional twingy feeling around the eye that usually heralds my cranial visitor, and still a lot of neck soreness - but the shadows quickly died down. Still keepin' the vegan/wheat-free thing up, so maybe it's helping...or maybe not.

Rock On.
Mike.

Title: Re: Potential Cluster Newbie.
Post by Ree on Jan 30^th, 2004, 2:53am

When things get bad, I lay down in a dark and quiet room and watch all the lightning flashes inside my eyelids. (Louis J)

on 01/29/04 at 17:48:06, Prense wrote:

This is coping with a cluster? Or am I misreading something....

Chris

I feel the same way... Migrainer here sounds like what happens to me................ Do Chers get flashes too.??????????? just curious..........I still think shadows are Migraines too... my opinion don't kill me.......... remember Im fragile..ree

Title: Re: Potential Cluster Newbie.
Post by thomas on Jan 30^th, 2004, 12:33pm

on 01/30/04 at 02:53:50, Ree wrote:

When things get bad, I lay down in a dark and quiet room and watch all the lightning flashes inside my eyelids. (Louis J)

I feel the same way... Migrainer here sounds like what happens to me................ Do Chers get flashes too.??????????? just curious..........I still think shadows are Migraines too... my opinion don't kill me.......... remember Im fragile..ree

I've never seen a flash of anykind........ usually blinded in the eye on the affected side...... Nobody's gonna kill our favorite Migrainer........ :)