Does anyone else get these? I'm in week 3 of my cycle and about every 3 days I'll get a really bad attack that lasts for 4-6 hours...usually they last about 30-40 mins....but not those ones :(

I too get them once in a while.
I haven't found a reason / cause so far.

Oliver

Do they ramp up in intensity and then subside--only to ramp up again?

If so, I wonder whether you're getting multiple attacks, one on top of another.  

Not that it matters--it sounds pretty hellish.

You're going to hear this more than once--but are you using oxygen to treat your attacks?

Best wishes,

George

I assume you asked both of us...

Mine don't ramp up and subisde. They build up a tad faster than usual and then simply stay there.
Weird thing is that they are always K8 or higher and that trex doesn't do anything.

Haven't had one since I got O2 in December so can't say if O2 works for them - I hope it does.

Oliver

shayzzee wrote on Jan 7^th, 2009 at 11:49am:

Does anyone else get these? I'm in week 3 of my cycle and about every 3 days I'll get a really bad attack that lasts for 4-6 hours...usually they last about 30-40 mins....but not those ones :(

Nope.

I've had a few very bad series of hits that went almost back to back spanning a total of 3 hours - but never one hit longer than about 90 minutes.

If you are talking about a high intensity hit for 6 hours, you have to be the toughest person I've ever heard of. I know that I couldn't take it.

Marc

It's happened once.....went right at 4 hours......caused my first and only trip to the ER.

Terrible stuff it was.

B

Racer1_NC wrote on Jan 7^th, 2009 at 12:35pm:

It's happened once.....went right at 4 hours......caused my first and only trip to the ER.

Yup!  Me too!

Except mine was about 4:45 ... Almost five hours ... Sure did suck the big green weenie!

Chuck

PS:  BTW, the emergency room did their normal treatment ... NOTHING for it!

Last night I had a nasty bout.  Started at 1225am lasting until 2am, half hour brake then started back up.  Shadowing heavily until about 6 this morning.  I also had back to back hits this past Sunday.  A bit unusual for me, but fuck 'em.  I'm still here.

Mine were always 4 hours unaborted. That is the reason I have not had an attack I haven't aborted in 5 years. Thankfully trex and O2 work well for me. I am never without on or the other.

Paul

I had a 4 hour ch once...I was praying for death.
Do you use oxygen/imitrex or any other form of aborting ch?

Langa

I've NEVER had a 4 hour attack...sheesh.....I refuse to even IMAGINE a 4 hour attack...damn. :'( My heart goes out to you, thought the occasional 90 minute hit was worthy of a good cry.

Joe

My attacks usually last about 2-3 hours each.  But you know, you might also be experiencing secondary headaches on top of it- like migraines or tension headaches...that can keep the party goin' for hours!!  :D

Going by the International Headache Classification (ICHD-2) "Book Classification" that describes the acute cluster headache as...

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 8 times a day. The attacks are associated with one or more of the following, all of which are ipsilateral: conjunctival injection, lacrimation, nasal congestion, rhinorrhoea, forehead and facial sweating, miosis, ptosis, eyelid oedema. Most patients are restless or agitated during an attack.
Diagnostic criteria:

  1. At least 5 attacks fulfilling criteria B-D
  2. Severe or very severe unilateral orbital, supraorbital and/or temporal pain lasting 15-180 minutes if untreated1
  3. Headache is accompanied by at least one of the following:
        1. ipsilateral conjunctival injection and/or lacrimation
        2. ipsilateral nasal congestion and/or rhinorrhoea
        3. ipsilateral eyelid oedema
        4. ipsilateral forehead and facial sweating
        5. ipsilateral miosis and/or ptosis
        6. a sense of restlessness or agitation
  4. Attacks have a frequency from one every other day to 8 per day2
  5. Not attributed to another disorder3

For more details of this classification please see the following link:

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Anything is possible, but an attack lasting 4 to 6 hours would appear to be out of limits per the classification above.  Back-to-back attacks where the time between attacks without pain wasn't clearly recognizable is possible, but there's the also the possibility of something else going down.

See your doctor/neurologist.

V/R, Batch

Pete, those are great "GUIDE LINES" ... But most of us know, there are possible variations on those.


Quote:

2. Severe or very severe unilateral

Well, how about an oddball?  Like ME?  As most know, I get hits on either side.  AND there have been a few times where I got hit on BOTH sides, at the same time.  That is NOT unilateral!


Quote:

once every other day to 8 times a day

Again, oddball me has blown THAT statement out of the water!  And I am not the ONLY one!  I have heard of many that have had more than EIGHT hits in a 24 hour period.  I do it several times a week during my "normal" cycle period, and EVERY DAY, during my "high" cycle period.

And how often have we heard that a sufferer gets only one or two hits a week?

SO, it IS possible to be outside those guide lines.  I have been tested often and quite recently, and I have no other condition to cause my "oddities" ...

BUT, I DO agree that this needs to be brought to the doctor's attention, to verify that nothing else IS causing the oddities.

Chuck

Yeah - those are guidelines.  Gary's had up to 12 attacks in one 24 hour period, and 10 isn't so unusual.  He pretty regularly has the 3 hour attacks, but has definitely had 4 - 5 hour attacks that - just like all the other ones - ramp quickly and stay "peaked" until they let up back into his high level of shadowing.

Thank GOD they've never switched sides or been on both sides at once.  Chuck, I can't imagine.

Laurie

Back in the early 1980s the published definition of CH only maxed out at 120 minutes and it took an entire neurological team of specialists at a university hospital witnessing my CH and wiring me up to sleep clinic like equipment to monitor brain waves to finally confirm my diagnosis as CH (with Cluster Tic Syndrome)  when routinely they lasted 3-4 hours.

The first time I saw a printed reference to the longer 180 minute maximum was in 1998.

As years passed my CH  became classic 45 min to 90 min duration and then in my forties i would get a mix of 5-8 hits a day of 45 min- 90 min and then a real good 3hour long duration attack at least once every other day( and a constant 24/7 low grade migraine all during cycle).

So odd ball exceptions are out there for sure.  

Batch wrote on Jan 7^th, 2009 at 9:04pm:

Anything is possible, but an attack lasting 4 to 6 hours would appear to be out of limits per the classification above.  Back-to-back attacks where the time between attacks without pain wasn't clearly recognizable is possible, but there's the also the possibility of something else going down.

W00t, Batch says I don't have CH! J/K My long attacks are one reason I cannot get a nero to treat me. They have it in their head it must be migraines and since they don't know about migraines like that there is nothing they can do.

 Good thing what ever I have responds to CH medicine, so I can self treat with the help of my GP.

There are many people that do not fit the norm. Of course always see a Nero, never self diagnose. I was diagnosed by an ER doc and so far the diagnoses has worked for me.

I have also had the dreaded double sided CH, Not fun at all, took both O2 and trex to kill it. I also used to get cluster/migraines, even less fun as you are throwing up the whole time, and cannot move or it gets worse.

Paul

I was hit last night for a 4 1/2 hour ride. Pure hell....I have had some vicious attacks this week, but nothing like this one. I've lost my voice from screaming. I've had 1-2 per cycle for the past 4 years.

At peak of cycle I have had one that did not respond to O2--lasted an hour at KIP 10--ramped down--only to ramp back up pretty much immediately lasting another hour.  Wow, did that s*ck, so I can't imagine 4-6 hours.  But my neuro told me that it is possible for them to go on even longer than I described when I was describing these awful ones that happen at peak of cycle (not sure why he shared that info with me) but anyway, do you have a good doctor/treatment plan b/c you shouldn't have to deal with it going that long.  Do you have imitrex (injectable)?  That is probably what I would recommend, b/c it will probably stop the headache.

Hi Shayzzee,

It happens to me at least once a month, yesterday as a mater of fact. It started at 1 pm and ran till 6pm when I finally gave in and hit the IM DHE. They were intractable continuous peaks hitting K8 and O2 resistant, between 2-3pm on constant O2 @ 25 LPM.

$hit happens! ::)

PF’s to ya,

Rolo… ;)

Well...  That sure smoked out a few more outliers with cluster headache attack patterns that exceed the ICH classification guide for diagnosis, but then it's just a guide and I wasn't questioning the diagnosis...  

There are however, some other medical conditions and triggers associated with cluster headache attacks that may make them more painful, more frequent...  and even last longer.  

There's no sense in being a record holder in any of these categories without at least trying to find out why or if anything can be done to avoid that status...  A good neurologist experienced in treating cluster headache sufferers may be able to help.

Take care,

V/R, Batch

Hi Pete [smiley=wave.gif]

I would add to the trigger effect “MSG”, it has been at the root of my worst K10 x 24hr continuous attack periods. I avoid it like the plague, and do not eat at restaurants that use it. I check all the canned goods and pre-prepared food that I eat. I believe it to be a universal trigger like beer or just alcohol for many. They (food companies) hide the $hit in almost everything these days. Go to the link and read the astounding list of sneaky ways this ingredient is slipped into your food supply.

Get some O2, best dam friend I have some days.

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Best,

Rolo. ;)

Rolo,

Are you saying a K10 for 24 hours?!!

Mark,

Up-Dn (more up than down) every 1.5-2 hours constantly for 12-24 hours straight. ;)

I can easily use more than an M-tank in a bad bout of hits over one day’s time.

here's one for ya...I got hit Tuesday evening and it ramped up to about an 8 or 9...took the usual stuff, resorted to the fiorinal- didn't touch it...

finally passed out around 3am, woke up with a K6 that stuck with me all day until about 4pm when it went up to a 9; stayed there all evening, no ups and downs, just stayed there;

after 5 fiorinals and no relief, I finally passed out about 3 am again.

Woke up this morning with the energizer bunny still rollin' at a 6 or 7, saw the doc and got a shot of Tordall (sp?) and a Reglan pill, took a nap, and now it's down to a 3-4.   :D

UTR,

Just guessing mind you, and I may be completely off base, but it sounds like you may be having heavy shadows or like you said earlier, a secondary headache in conjunction with a cluster headache.  In my 15 years with cluster headaches as an episodic and now as a chronic, I've found my cluster headaches come in two distinct varieties...  I call them Shadows and Stingers.

My shadows happen at Kip-5 and below and my stingers run at Kip-6 and above.  I made the distinction between these two types of cluster headache attacks for the simple reason that Shadows very rarely ever climb above a Kip-5.  Like $hit, they just happen.  They increase in pain very slowly and can last for several hours. Other than the gnawing pain, I have none of the other classic cluster headache symptoms when I have shadows.  There's no tearing, no runny nose, no puffy eyelid and no allodynia.  In short, I have none of the autonomic symptoms characteristic of the cluster headache syndrome other than the pain.  A Kip-4 will wake me unless I'm tooted on rum & coke...  and if I'm really tired, I can go back to sleep with a Kip-3.

Stingers on the other hand rocket from the first sign of a pending attack prior to any pain up to Kip-7, Kip-8, or higher in less than 3 to 4 minutes.  My stingers last from 15 minutes to no more than an hour and a half without intervention.  I know the difference between the these two varieties, so when I have a stinger starting it's very obvious and I run for the oxygen as fast as my feet will carry me.  My eye starts to water and nose run on the hit side between Kip-6 to Kip-7 and by Kip-8 I have most of the classic cluster headache symptoms.  I have had back-to-back stingers with as little as 15 to 30 minutes between attacks.

I also find it hard to believe that anyone, not Superman or even Chuck would be able to take a Kip-9 or Kip-10 without some form of intervention for much more than an hour without going totally bananas...  Having said that, I'm well aware we're all wired differently and I'm equally sure none of us perceive pain exactly the same so anything is possible...  I do think that calibrating our perception of pain by using Kip-level at wake up and Kip-level where tearing starts is helpful.  

Hope this makes sense...

Take care,

V/R, Batch

You just described me perfectly!

Marc

Batch wrote on Jan 9^th, 2009 at 11:43am:

I also find it hard to believe that anyone, not Superman or even Chuck would be able to take a Kip-9 or Kip-10 without some form of intervention for much more than an hour without going totally bananas...

 

Close, after 2 hours you become psychotic, your mind goes away and your subconscious comes out to play. It takes a lot too keep yourself together. At first you tell yourself you can make it 15 more minutes , then 5, and finally surviving 1 minute at a time.

Paul

Batch wrote on Jan 9^th, 2009 at 11:43am:

I also find it hard to believe that anyone, not Superman or even Chuck would be able to take a Kip-9 or Kip-10 without some form of intervention for much more than an hour without going totally bananas...

I am sure some of us have gone "totally bananas" and you are correct that we occassionally need an intervention at the emergency room of the nearest hospital to sedate away some of the pain/misery.

I agree with Opus (one of the other Pauls's...what is with Paul's getting these things anyhow?...i know of several) that you must get yourself into a mental zone to deal with them....for me it is almost an out of body experience...my own mental coping mechanism I guess....see, maybe i am bananas!!


Paul

Thank you, Batch!  That was a very clear explanation!  I'm still trying to learn to gauge the "shadows" from the "stingers", and that description really helped.

Whatever this was that happened, the "hot poker through the eye" type of pain was the constant; for the whole 2 days, it was there, wavering between a 6 and a 9....but, I did not get any of the side symptoms like tearing or drooping eye; I had a mild tension-type headache across my forehead as well, though, but that was bumpkus compared to the occipital stabbing.

My doctor really thinks it was a rogue CH hit...but hey, I won't quibble as long as it stays gone!  ;D

As far as pain goes...I've had kidney stones, five broken noses, three broken ankles that I didn't even know about, and natural childbirth.  And I can definitely say that this was worse than all of those.   :D   But hey, I'm my father's daughter, right Batch?  ;)

Batch...

Not sure what you mean by "smoked out a few more outliers".  I have had a Kip 10 that lasted nearly 2 hours--well, it ramped down after an hour and then immediately ramped back up.  My neuro is a headache specialist who works at one of the best headache clinics in the Northeast and he told me that they can last longer than that.  All I know is, they can ramp down and then ramp back up right away.  It's not pretty, but it can happen.  It's a reason to keep imitrex on hand.
Also, I've been episodic for 20 years--there is no grey area in my mind between a shadow and an actual CH attack.  I have had a few more painful prolonged shadows which, while I had them, I was wondering whether or not they would actually turn into an attack (they didn't), but I don't really see how anyone can confuse a shadow with an attack (unless they are just confused about what a shadow actually is--which I think would be possible if someone had only been episodic for a few years).
Just my 2 cents.

Sorry, just to add on about SHADOWS--could I be so bold as to define what I think a shadow is?  A shadow is when you feel like you might, in the near future, be getting a cluster headache attack.  I am mainly awakened by sleep from CH, but have had many daytime attacks also.  A shadow is where you get a sensation (certainly not pleasant but not horrible) in your head which makes you think "shit I hope I will not soon be getting a cluster headache".  OK.  Just wanted to say that b.c that is what I think a shadow is.  The pain of a shadow to me is really nowhere in the realm of the actual cluster headache attack pain zone.  If I am wrong I apologize.

Quote:

Close, after 2 hours you become psychotic, your mind goes away and your subconscious comes out to play. It takes a lot too keep yourself together. At first you tell yourself you can make it 15 more minutes , then 5, and finally surviving 1 minute at a time. Paul Back to top

Paul....I don't believe anyone has ever said it more perfectly.  2 hours./..o.k.   4 to 6 hours of this pain would/should put one in the looney bin, or begging for anathesia. At least it would me and I have been chronic with no break for almost 22 years now.

Some have said they get hit  17 times per day.   What does that mean?  one hit every hour for 24 hours lasting how long?  How much "down" time in between?

I have at my worst before lithium, been hit with K10’s every 2 hours for 90 minuets at a time. This 2 hour hit pattern has run up to 60 hours strait, with actual time at K10 in a hit period being from 10-45 minuets and the K10 pain comes in spikes and waves for me. I have punched myself in the head 20-30 times so hard that I have seen stars from the blows (not recommended). I have been at the point where I am screaming and wanting to do the ER thing, and contemplating the pistol. I bypass the “Psychotic” stage and go strait to wanting to put a real-time end to it all… I have somehow been able so far to avoid the ER because I just could not imagine dealing with the pain in an unfamiliar bat cave.

Now that I am on the lithium I rarely get a K9 anymore, but still routinely visit K8 land every three days. My chronic 3 day cycle is a day and night of constant hits followed by a intermittent day and night. On the third day I am usually clear day and night with just one hit at 5-8pm range. Then I wake up to start all over again. Shadow pain almost always on the bad days, and rarely does the shadow pain not bloom in to full blown hits.

The Oxygen Vampire,

Roland. [smiley=hammer.gif]

Layla328 wrote on Jan 10^th, 2009 at 8:41pm:

A shadow is where you get a sensation (certainly not pleasant but not horrible) in your head which makes you think "shit I hope I will not soon be getting a cluster headache"......The pain of a shadow to me is really nowhere in the realm of the actual cluster headache attack pain zone.

Thank you for this excellent definition of how I perceive my "shadows"


Paul

Mityrare--I'm glad if I described it well.  Helped me to "define" it cause wasn't sure if I was not understanding what the word implied, but was pretty sure that's what was meant.  

I sometimes get attacks that last around 4/5 hours. It happens a few times in a year. I really hate it, its frightening  :-/

And its always the same situation: during the evening I start getting a thick,'sick' feeling in my head. I go to my bed and try to get comfortable, and fall into a restless sleep. Then, at 2am, bang on the dot, I'm woken up with the worst agony  :o And it just goes on, and on, and on! At about 5:30am it starts to ease abit, and by about 7am, I can rest a little better, and by then I'm so exhausted I crash out, but it leaves me feeling rough for a couple of days.

Its interesting because, my 'usual' CH attacks happen on the right side of my face/head, but when these Big Bangs come along, its on the left side.