ajy wrote on Sep 8^th, 2009 at 3:27pm:


Well--that might be a little tough for anyone to answer, since you seem to have answered all the questions both "yes and no".   

The quiz is just an indicator, to give you some notion whether or not you MAY have CH.  It's not a diagnostic tool. 

You really need to get a definitive diagnosis from a physician.  We don't do diagnosis here. 

Best wishes,

George

(edited for spelling.)

Quote:

Looks like fence-sitters disease to me.

It's generally not a good idea to seek diagnosis on an Internet board.

If your headaches can be subdued with simple over the counters meds, I would keep looking for another answer.

Even if you "scored" 100% on the test, you need to remember that there are deadly conditions which can mimic CH symptoms.

If you are concerned, bring your symptoms to a qualified Neurologist. If he/she is any good, you won't get a diagnosis without ruling other problems first with imaging of your head and possibly neck.

I can recall more than one person visiting this site over the years who's symptoms sounded like classic CH's with Kip 10 pain levels. Turned out to be other things needing surgery, fast........

Why chance it?

Marc

I've been called many things but...a Doctor isn't one of them.

I humbly suggest you see one, a Doctor that is.

Ajy,
As an aside, I'm not a clusterhead (supporter).  I have migraines and I don't have any of the symptoms you listed.

Where are you located?  Just because someone is a neurologist or even a headache specialist does NOT mean that they know about clusters (many on here have chased a diagnosis for years).

Carolyn~aka~deltadarlin

My best advice to you since it seems the doctors are either unaware of all your symptoms or just not thinking in terms of CH is that you start keeping a Headache log.  Log the time of each hit each day, duration and intensity on a scale of 1-10.  Then make another appointment with a neurologist or headache specialist after a few weeks to a Mo. of logging your headaches.

Many times once a Dr. sees in black and white what you are going through it will spur them into action or just  by seeing your situation in writing may have a diagnosis right then and there for you, after the exam of course. 

Good Luck and keep us posted.

My headache is constant and relentless, and the only non-medicinal thing that seems to abate it is going to sleep.  It would take me about 2 hours of trying to sleep - 2 hours of thrashing and moaning and clutching my head.  Eventually I fall asleep and when I do wake, the headache has noticeably reduced but would come back over time (about another 1-2 hours time).

However, mine is treatable with Tylenol so it is really impossible to know now the timing of it the more I think about it.  It happens at the same time each day, but maybe because that's when I wake up in the morning?  If it takes 1-2 hours to get to full power from waking, and I wake at 8am then would it not predictably start at 10am?  The ending part is more difficult to explain, because I remember staying up until around 11:30pm without having taken any tylenol in the last 8 hours - on that day the first Emergency Doctor thought I might have glaucoma and gave me glaucoma medicine to relieve pressure from my eye (which was at the time high enough level to indicate glaucoma) and I did not have symptoms after taking the medicine, however the next morning the medicine did not work.  The next day the pressure in my left eye (affected) was less than my right eye, and yet I still had the excruciating head-ache, which therefore rules out glaucoma.  Regardless, I don't seem to have symptoms in the evening regardless of all the things I've tried.

Can I request that the kip scale descriptions be updated?  Specifically the descriptions for 8-10?  Honestly they are really ambiguous and I'll explain why:

Kip 9: "why me" syndrome - I don't know whether Kip had low self esteem, but I've experienced pretty low pain before and asked "why me" if it was sufficiently disruptive (like a tooth ache).  Are you telling me that up until level 8 when you're screaming like a baby, swearing like sailor and can't get to sleep but for some reason you're thinking "I deserve this", or "I'm okay with this" then all of a sudden there's a point (that is universally recognized) at level 9 where you magically realize "aw hell no, why me?"  Honestly, you might as well have a level 11 called "OMG, why the f me?" because it would be equally as nonsensical.  So you tell me, how does one objectively go from 8 to 9?

Kip 10: okay so what's the difference between this and level 8?  The fact that it is "major" whatever the heck that means?  Let's look at the other descriptions:
ER Trip - well I don't know what that means either.  I lined up in Emergency check-in moaning and with my head in my hands and I had to line up behind two guys who looked like they had nothing better to do.  Obviously they thought that their symptoms required an "ER Trip", so the description is meaningless.
Depressed - okay here is another ridiculous one.  Are you honestly telling me that up until level 8 you can't sleep, you're screaming, yelling, cursing and banging your head and only at level 10 - the worst pain known to medical science according to wikipedia - you are feeling a little down (before that, you're just fine and dandy!)?  Gimme a break!
Suicidal - Another totally ambiguous description.  I can understand that some might actually be suicidal, but a lot of you alive today reading this board are obviously not suicidal and are obviously trying to find solutions or relief (the opposite of suicidal).  You may have "entertained" or "fantasized" about suicide but they are completely different things.  Let us NOT trivialize suicide.

So while the kip scale is apparently sacred on this website, perhaps you can entertain the notion that it really isn't that good beyond 8.  I think with these layman type scales, it's better to give numbers that people can relate to and are more objective from an experiential point of view, rather than subjective descriptions like "depressed", "why me" or "suicide".  Maybe:
"fantasized *constantly* and *continually* about cutting off the part of the head causing pain"
or
"worse than childbirth"
or
"Like being stabbed in the eye with the knife still in there"
or
"did something that would demean you to someone you want to respect you" (eg. to your kids, spouse etc.)
or
"like the feeling of a limb being continually amputated"
or
"like all my teeth being pulled out at the same time over and over"

For example, for me, I would rather have this headache than "have all my teeth pulled out at the same time over and over" because teeth are extremely sensitive and the pain is sharp and acute and excruciating - but it's quick and over and done with.  My headache was not as acute but was constant - like being stabbed in the head and having the blade still in there.  So if the teeth pulling was a "10", I might be an 8 or 9 depending on what 9 was.

Just my 2c.

Don - you see - your explanation clearly tells me that I did not experience a level 10.  The "Kip 10" description tells me nothing, and it looks like it told you nothing too since you didn't understand what it was until you experienced it.

That's what I'm talking about.  I don't believe in sacred cows, and sorry to say K9-10 are flawed descriptions.  Maybe replace K10 with D10? 

So I disagree with you.  The descriptions CAN be improved that other people CAN identify with.  Up until 8, they are kind of sane, but when you get to 9/10 territory if you can give an absolutely horrid *insane* description (like "worse than all your teeth being pulled out at the same time without painkillers, over and over") - it is more descriptive than "major" or "depressed" (meh).  For crying out loud, people get depressed if they miss an episode of American Idol, what does "depressed" tell you?  Let's be honest, the 9/10 descriptions suck, and I suspect people are persisting with them because "Kip scale" sounds cute/endearing and people are just resistant to change.

Hi Jerry,

thanks.  The pain is constant and does not swell or diminish during the day.  I can only base this on what I experienced on just this Sat-Mon as starting Mon afternoon I took Tylenol consistently; but before the Tylenol taking was sporadic (when it got really bad) because before Mon afternoon I was either taking allergy medicine or glaucoma medicine depending on which advice I was going on at that time.

What you're telling me about the lower Ks is scaring the heck out of me, so if you can elaborate on where this "swelling/diminishing" is leading, it would really be appreciated.  It would kill me to think that the problem could get worse!

(aside, and I don't want this to be the focus of the discussion as your new information is concerning to me, but your explanations of the Kip scale make sense, but nevertheless by themselves the K9/10 descriptions are useless to someone outside these boards.  Someone can easily say they're "suicidal" if they are flippant about it, without truly understanding/experiencing a K10 episode.  Yes - you know, and so does Don, but only AFTER you've experienced it.  How is that useful to someone who's new and still trying to figure things out?  Also, I still don't understand how to measure "why me".  The fact that outsiders cannot clearly understand it means it's not a good description.  I participate in hobby forums, and glossaries are concise, precise and clear for newbies, not *wink wink* secret code language for insiders.)

Anyway - back to the REAL matter at hand - please elaborate on the importance of swelling/diminishing pain.  Thanks!!!

"The fact that outsiders cannot clearly understand it means it's not a good description.  I participate in hobby forums, and glossaries are concise, precise and clear for newbies, not *wink wink* secret code language for insiders."

It is a secret code! You can only understand if you get CH. Its part of the process like an enlightening that only the special ones can decipher. 
In Reality, its difficult to put ones pain into words so as a simple point of relation many have taken this poorly worded scale as a simple 10 point reference. each will make their own interpretation of it.

"Anyway - back to the REAL matter at hand - please elaborate on the importance of swelling/diminishing pain.  Thanks!!!"

A cluster of headaches.
An individual cluster attack or hit "generally" lasts from 45 minutes to 2 hours and generally there is a substantial pain free time between hits for most. This can be a few minutes, an hour or sometimes even days between hits.

Some have back to back hits where the pain escalates very rapidly and diminishes as fast in the above time frames, but between hits there is no pain free time only a lessening of the pain before another hit ramps up..
This can be misconstrued as an all day or extended cluster attack when in reality its several hits all rolled up together.

Hi guys,

this may be premature but today I woke up markedly better, and it's 9:45am and I haven't taken any medicine yet.  I have a tiny headache but it's tolerable.

I do want to say that I give my wholly inadequate but nonetheless deepest and most heartfelt sympathies to you all who suffer CH.  I am appalled that such suffering can be borne by any one man or woman.  In saying that, I did experience excruciating pain myself and I wanted to get to the bottom of how it rated on your "Kip Scale".  I found the K9/K10 descriptions completely useless so I tracked down Kip to explain how one was to measure when a "why me" became a K9 why me?  It was obvious to me after some replies to this thread that I didn't experience a K10, but nevertheless I was curious whether mine was a K8 or a K9.

Here's his "why me" rating scale:

1) why me? because I'm special!
2) the question for today is: why me?
3) why me? well why not?
4) I'm thinking that at some point in my llife my mother said of me: why me?
5) a priest, pastor and a rabbi walked in a bar and I asked them: why me?
6) clutches a stuffed animal whimpering at the bedpost: why me teddy?  why?
7) I promise to eat that box of kitty litter if someone this question: why me?
8) really - why the fcuc me?
9) mommy?  why me mommy? answer me dammit!
10) Bloody super rip my testicles and answer me M*^% FV<)R : whhhhyyyyy meeeeeeee!!!!??? (congratulations you're at K9)

So given I only rated only a W2, I guess I only reached a K8 on the Kip scale.  In other words: those of you who have rated higher, you have my deepest sympathies and I pray that one day there will be a cure for your condition.

Regarding the CT scan, I will go by the doctor's suggestion given that it appears to be improving and see how it goes by this weekend.  It has been really nice getting to know you!

best regards,
AJY.

crap - the headache came back.