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(Message started by: BlueMeanie on Feb 17th, 2004, 5:27pm)

Title: Cluster Quiz
Post by BlueMeanie on Feb 17th, 2004, 5:27pm
I noticed there are many new people visiting this site that lists their headache symptoms that DO NOT sound like cluster headaches. I was just wondering about the cluster headache quiz that people take when arriving at this site.

It seams that people take the quiz then say they think they have cluster headaches. This question is for those of you who know without a doubt that you have cluster headaches.

1.) Does anyone answer YES to any of the questions #1-8 ?

2.) Do you think anything could be added to questions #9-16 ?

3.) Do you think the survey could be changed to be more cluster headaches specific ?

Title: Re: Cluster Quiz
Post by thomas on Feb 17th, 2004, 5:34pm
I answered yes to #4.

Title: Re: Cluster Quiz
Post by Prense on Feb 17th, 2004, 7:49pm

on 02/17/04 at 17:27:40, BlueMeanie wrote:
I noticed there are many new people visiting this site that lists their headache symptoms that DO NOT sound like cluster headaches. I was just wondering about the cluster headache quiz that people take when arriving at this site.

It seams that people take the quiz then say they think they have cluster headaches. This question is for those of you who know without a doubt that you have cluster headaches.

1.) Does anyone answer YES to any of the questions #1-8 ?

2.) Do you think anything could be added to questions #9-16 ?

3.) Do you think the survey could be changed to be more cluster headaches specific ?


Let's see...

#1) Do your headaches normally last LESS THAN 15 minutes? good question

#2) Do your headaches normally last MORE THAN 4 hours? probably should be "Do your HAs normally last MORE THAN 3 hours?"

#3) Do your headaches normally switch sides from day to day or during a headache? good question

#4) When you have a headache, do you normally seek a quiet, dark place? this needs to be re-worded--since many of us get hit at night when the rest of the family is sleeping, this could easily apply to a cluster head.  My recommendation--"When you have a headache, does noise and light normally bother you?"

#5) When you have a headache, do you normally want to be around other people?key word is want--good question

#6) When you have a headache, can you normally lay down and be motionless? this one question should rule out CH completely

#7) When you have a headache, can you normally go to sleep to make it go away?same as question number 6

#8) When you have a headache, do you normally experience nausea?again, key word is normally--good question

#9) Are your headaches always on the same side of your head?since question number three is worded as it is, this should use the word "normally" instead of "always"

#10) Do your headaches normally wake you up from a sound sleep?good question

#11) Do your headaches normally occur at the same time of the year and same times each day?good question for episodics...

#12) Do you normally experience a stuffy nostril on the same side of the face as the pain?should be worded as stuffy OR runny

#13) Do you normally experience a "droopy" eyelid on the same side of the face as the pain?good question

#14) Do you normally go from totally pain free to totally debilitated in 5-10 minutes?very good question

#15) Do you normally go from totally debilitated to totally pain free in 5-10 minutes?same as number 14

#16) When you have a headache, do you walk, pace, bash your head, thrash, scream?good question



This questionaire is not a diagnosis...it was never intended to be.  This gives a reader a quick idea that they "might" or "might not" have CH.  Not all clusterheads are the same!  Some DO have issues with noise, light, nausea...these symptoms are not the norm though.

The bottom line is that no one should be self diagnosing...nor should we be diagnosing.  The diagnosis should come only from the medical professionals who are trained.

I very much agree...I think there are numerous folks diagnosed with CH that do nothave it.  I also believe that there are numerous folks that are diagnosed with something else when they have CH.  I do not think the "cluster quiz" is much of a contributing factor to that.  If it is, someone is not being honest...with themselves anyway.

Anyone else...thoughts?

Chris

Title: Re: Cluster Quiz
Post by pubgirl on Feb 17th, 2004, 8:38pm
Can't really comment on the Quiz, as it certainly helped me clarify some things when I was undiagnosed.

We have had a lot of good TV, radio and newspaper publicity recently over here about CH and it is helping us find lots of lost sufferers and offer them assistance.

The BIG BUT
it is my personal belief is that with the increased awareness seems to be whole new set of crap Doctors, who previously never diagnosed Ch at all, now diagnosing ANY severe 'group' of headaches as CH.
Also individuals who don't/can't be bothered to read past the first few symptoms or read about any other headache types and diagnose themselves as having CH.

This was my reason for suggesting on another post that we need to be vigilant here for the other symptoms which suggest things like TN, CPH,SUNCT etc and my personal bugbear BAM (as taking Triptans can kill with BAM) also my previous suggestion that a chart with the main differential diagnoses for easy reference somewhere very obvious in the links could be a good idea. (a very clued up guy in the UK has written one btw)

Wendy

Title: Re: Cluster Quiz
Post by Prense on Feb 17th, 2004, 8:44pm

on 02/17/04 at 20:38:58, pubgirl wrote:
it is my personal belief is that with the increased awareness seems to be whole new set of crap Doctors, who previously never diagnosed Ch at all, now diagnosing ANY severe 'group' of headaches as CH.
Also individuals who don't/can't be bothered to read past the first few symptoms or read about any other headache types and diagnose themselves as having CH.


Absolutely!

Title: Re: Cluster Quiz
Post by justasound on Feb 17th, 2004, 8:58pm
Maybe this club is sooo cool that everyone wants to join........  But I doubt it.   ::)

Title: Re: Cluster Quiz
Post by t_h_b on Feb 17th, 2004, 9:14pm

on 02/17/04 at 17:34:04, thomas wrote:
I answered yes to #4.



Dammit, I did, too, Thomas!  Question #4 is YES.


On question #11, it might should say OR or AND/OR instead of AND to include chronics.  Same time of the year means nothing to us so technically it would be NO as worded.  The word PATTERN might also be used:  

"Do your headaches usually follow a pattern, occuring at the same time of the year or at the same times of the day?"

Maybe all of the NORMALLY's should be USUALLY's.  Maybe.

Other good questions might be something like:

"Do you frequently wake up with a headache 45 to 90 minutes after going to sleep at night?"

and

"When you have a headache, do you have burning, stabbing eye pain?"

This last one seems to be very important.

Title: Re: Cluster Quiz
Post by Karla on Feb 17th, 2004, 9:26pm
I think the current survey is fine the way it is.  It has worked fine over the years and proved it is something that one can messure to.

Title: Re: Cluster Quiz
Post by eyes_afire on Feb 17th, 2004, 11:00pm
I agree with Karla.

Don't 'usually' and 'normally' mean 'nearly' the same thing?   [smiley=huh.gif]

Despite the fact that I'm a classic CH, add this and I'd have to answer 'no':


Quote:
"Do you frequently wake up with a headache 45 to 90 minutes after going to sleep at night?"


It almost never happens to me.  I'm more of a 4am beaster.

Yes, burning eye.

--- Steve

Title: Re: Cluster Quiz
Post by pubgirl on Feb 18th, 2004, 3:13am
Burning stabbing eye pain is also classic TN symptom, that's why people need to read up and use the Quiz as a STARTING point, not the final answer.

Sorry, off my soap box now!

W

Title: Re: Cluster Quiz
Post by Edski_1 on Feb 18th, 2004, 9:40am
I said yes to #4...I figure this might be somewhat pshycological.  My "daily" HA cycle is such that I don't get (luckily) many night HA...maybe about 10%...so maybe I don't associate dark, quiet places as bad places to be...I generally don't want to be near people if I have a headache...so it's not a bad option to be a in a dark quiet room...

#10 I said no...but again, I get most of my HA's (~90%) durring the day...between 7-9 AM, 1-3 PM, and 7-9PM.  I have been woken up...but not nearly as often as the Beast has visited durring the day.

#13 I said no...but to be honest...I've never really looked or been told... :-/

Title: Re: Cluster Quiz
Post by thomas on Feb 18th, 2004, 10:20am

on 02/17/04 at 21:14:05, t_h_b wrote:
Dammit, I did, too, Thomas!  Question #4 is YES.

Now you are starting to scare me.......lol.

Title: Re: Cluster Quiz
Post by don on Feb 22nd, 2004, 2:30pm
Quiz seems pretty specific to me.

You try and narrow it down to every single individual characteristic and behaviour you will have a 450 question quiz.

Title: Re: Cluster Quiz
Post by J.ten_Dam on Feb 22nd, 2004, 4:37pm
here we go again! Cluster quiz. I have done it and although I know and my neuro that specialises in Ch knows that I have cronic CH it not recognised bu the cluster quiz.
NB there are two cluster quizes on the one with 16 questions I am CH the one with 30 questions it dose not know.
In my opinion the one with 30 questions is a bit misleading if you are a cronic sufferer.

Title: Re: Cluster Quiz
Post by Lizzie2 on Feb 22nd, 2004, 6:08pm
Well I think that there are always going to be problems with a "quiz" type setting because there are always exceptions to the rule.  That 30 question quiz mentioned is only effective if you have one headache type and all the most typical associated symptoms.  It gets more complex when you have atypical symptoms or more than one headache type.

My new neuro makes me discuss my 2 headache types completely separately.  This helps to keep the symptoms straight.  For instance, if I'm having a bad day with the chronic daily migraines, I definately do want to sleep or lay down...with nobody near me and no light, sound, etc.  Nausea is often present with these headaches.  When I have clusters, I want to do anything BUT lay down.  Activity seems to help me feel better, but activity is a major pitfall for my other headache type.  If I banged my head during a migraine, it would flip me out.  Banging my head during a cluster attack certainly does not make it worse.  More of a coping mechanism.

Wendy, I'd be more than happy to help come up with some type of chart or information about all the different headache types.  As you know, I've spent a lot of time learning about all types of headaches, and I have a great book that actually does lay the headache types out in a chart in some cases.  I'm picturing one chart in the book where it is solely to differentiate between CPH, EPH, SUNCT, Hypnic Headache...and I forget the other kind.  But at any rate, it lays it out pretty straight forward.  There are several different types of migraine including BAM, Episodic Migraine of both classic and common types, hemiplegic migraine.  Chronic Daily Headache includes transformed migraine, new daily persistent headache, hemicrania continua, and chronic tension type headache.  There is also episodic tension type headadche.  Then there are the clusters and cluster-related such as the CPH, EPH, SUNCT, and hypnic.  Many different headache types with many distinct and defining characteristics.  I would say it might do some good for people to learn a little bit more about the different types in case their headaches fit another type more.  Ultimately, a doctor should be diagnosing, but maybe people are reading just one set of symptoms for one type of headache, and they feel they have that...without knowing the symptoms of the other headaches which might fit them more.

~Lizzie :)

Title: Re: Cluster Quiz
Post by pubgirl on Feb 22nd, 2004, 7:35pm
Lizzie
Cheers
There is chart Drummer did on the OUCH site, which is very good, but not containing all the primary headaches that CH is confused with. I think it still needs to be kept relatively simple though.
Also, many people sadly don't get past the message board here, so never see it.

It's not up to me what is included here, I was just floating it as an idea that might be useful.

Title: Re: Cluster Quiz
Post by Retta34 on Feb 22nd, 2004, 7:36pm
Hi everyone, this is only my 2nd post, but I did want to comment on the cluster quiz.   After my doc diagnosed me last week, I went online to see what I could find out about CH.   Luckily I found this site.   I did take the cluster quiz and found that I did answer yes to questions 9-16.    As far as 1-8,  I tried to answer those in the context as "normally"--certainly I have had a CH that only lasted 15 minutes, but mostly they last longer than that.    Sometimes I do get naseauted, but I think that's only if my CH happens to occur right after I eat.     My worst CH headaches (other than the ones that wake me up) are the ones I have in the morning right as I'm trying to get ready for work.    Just try applying eyeliner during a CH----IMPOSSIBLE !!

I do understand the concerns of too many people trying to diagnose themselves with CH or having their docs dx them incorrectly.    My family has had to deal with the ADD overdiagnosing nightmare, so I know this can be a problem.     I certainly want everyone to get the right diagnosis so they can get help.    

I will continue to educate myself about CH, but I do believe my doc's dx of CH was correct.   He knows that I have suffered from migraines in the past and they are certainly not like these CH.    

This may not be the correct place to ask this, but here goes.   Any other high blood pressure sufferers out there?  I'm a little concerned about using the Imitrex with the warnings about cardiac risk factors.   I know, I should have asked my doc, but I guess I was a little shocked when I left his office.

Just want to add that I'm very happy to find this site.  

Title: Re: Cluster Quiz
Post by don on Feb 22nd, 2004, 8:01pm

Quote:
.   I know, I should have asked my doc,


If your Doc doesn't know you havr high blood pressure then you might want to get another Doc? Rxing triptans without a patient history? WTF ?

Title: Re: Cluster Quiz
Post by Retta34 on Feb 22nd, 2004, 8:09pm
Sorry, should've clarified---he knows I have high blood pressure.   He's been treating me for this condition for the past 3 yrs.   Actually tried me on Verapimil but I wasn't able to tolerate it--this was before my CH diagnosis.    Currently on another blood pressure med at this time.     I was just concerned about the cardiac risk and Imitrex.

Title: Re: Cluster Quiz
Post by RP on Feb 22nd, 2004, 8:13pm
As one of the new one's likely being referred to here, I'll just say I haven't found a mold my symptoms fall into. Please don't assume I haven't taken the quiz's and explored this and many other websites thoroughly.

I have not accepted this diagnosis, but it does feel like a light at the end of the tunnel.

Just lookin for answers.

Title: Re: Cluster Quiz
Post by amen on Feb 25th, 2004, 3:19pm
I answered yes to #4 as well.  and #8 is kind of iffy.  Depends on what you considered normally.  I get the nasea about 50% of the time.  Just my  [smiley=twocents.gif]
Andrea

Title: Re: Cluster Quiz
Post by t_h_b on Feb 25th, 2004, 6:42pm
Seems like several people answer "Yes" to #4.  I don't like being around people when I have an attack and sometimes get extremely photosensitive.  So I USUALLY seek out a quiet, dark place.




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