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        Cluster Headache Help and Support >> Cluster Headache Specific >> Survey: Cluster and sleep + start of episode
        
(Message started by: cluster on Apr 21^st, 2007, 1:30pm)

Title: Survey: Cluster and sleep + start of episode
Post by cluster on Apr 21^st, 2007, 1:30pm

Dear all,

this gentleman has a couple of questions.
I think we should support him with answers.

http://www.uke.uni-hamburg.de/institute/systemische-neurowissenschaften/images_content/institut-systemische-neurowissenschaften/may.jpg

Priv.-Doz. Dr. med. Arne May

Dr. May is one of the European experts on headaches, especially cluster headaches. (He works here.) (http://www.uke.uni-hamburg.de/institute/systemische-neurowissenschaften/index_24920.php)

I'll put his questions into a reply to this posting. Please be so kind, click the "Quote" option on the upper right corner of the following message and fill in your answers.

Thanks in advance and painfree wishes,
Friedrich

Title: Questionaire
Post by cluster on Apr 21^st, 2007, 1:35pm

Are you chronic or episodic?

> Chronic

What is your age?

> 44

Are you male or female?

> male

For how many years have you had cluster headache now?

> 6

During sleep:

Does the pain wake you up?

> Yes

Or do you wake up before the pain starts?

> Yes

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.

> 90% the pain wakes me up

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

>

Or can you feel somehow in advance that the episode is about to start again?

>

Or have you experienced both?

>

Title: Re: Questionaire
Post by Rosybabe on Apr 21^st, 2007, 3:28pm

on 04/21/07 at 13:35:45, cluster wrote:

Are you chronic or episodic?

> episodic

What is your age?

> 35

Are you male or female?

> female

For how many years have you had cluster headache now?

> 23

During sleep:

Does the pain wake you up?

> Yes

Or do you wake up before the pain starts?

> Yes

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.

> 70% the pain wakes me up

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

>yes

Or can you feel somehow in advance that the episode is about to start again?

>yes

Or have you experienced both?

>yes

Title: Re: Questionaire
Post by JohnC on Apr 21^st, 2007, 5:51pm

on 04/21/07 at 13:35:45, cluster wrote:

Are you chronic or episodic?

> Chronic

What is your age?

> 43
Are you male or female?

> male

For how many years have you had cluster headache now?

> 6

During sleep:

Does the pain wake you up?

> Yes

Or do you wake up before the pain starts?

> Yes

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.

> 90% the pain wakes me up

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

>

Or can you feel somehow in advance that the episode is about to start again?

>

Or have you experienced both?

>

Title: Re: Questionaire
Post by UN solved on Apr 21^st, 2007, 7:50pm

This is not much of a questionare ... but I'll answer ya

on 04/21/07 at 13:35:45, cluster wrote:

Are you chronic or episodic?

> Chronic for over 6 years now

What is your age?

> 37

Are you male or female?

> male

For how many years have you had cluster headache now?

> 18 years

During sleep:

Does the pain wake you up?

> Yes

Or do you wake up before the pain starts?

> No

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.

> 99% the pain wakes me up

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

> I usually have a few milder attacks before the real hell starts !

Or can you feel somehow in advance that the episode is about to start again?

> Yes ... the mild ones are the beginning. The real pain is on it's way

Or have you experienced both?

But yes .. I've had it happen both ways. One day I think I'm out of cycle and them BAM ... usually at night

Title: Re: Questionaire
Post by George_J on Apr 21^st, 2007, 9:47pm

on 04/21/07 at 13:35:45, cluster wrote:

Are you chronic or episodic?

> Episodic

What is your age?

> 53

Are you male or female?

> male

For how many years have you had cluster headache now?

> 40

During sleep:

Does the pain wake you up?

> Yes

Or do you wake up before the pain starts?

> Yes

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.

>The pain wakes me up about half the time. I have a tendency to wake during REM sleep even out of cycle.

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

>

Or can you feel somehow in advance that the episode is about to start again?

>Before the pain starts in a new cycle, I can "feel" it coming on in a hard-to-define manner. Stiffness in my neck, small spasms of pain that are short in duration, etc. But I know it's coming.

Or have you experienced both?

>

Title: Re: Questionaire
Post by Skyhawk5 on Apr 21^st, 2007, 11:17pm

on 04/21/07 at 13:35:45, cluster wrote:

Are you chronic or episodic?

> Episodic

What is your age?

> 51

Are you male or female?

> male

For how many years have you had cluster headache now?

> 19

During sleep:

Does the pain wake you up?

> Yes

Or do you wake up before the pain starts?

> Yes rarely though

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.

> 90% the pain wakes me up

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

>No have had out of cycle hits

Or can you feel somehow in advance that the episode is about to start again?

> Not this cycle it came early

Or have you experienced both?

> Yes

Title: Re: Questionaire
Post by Trooper on Apr 22^nd, 2007, 12:41am

on 04/21/07 at 13:35:45, cluster wrote:

Are you chronic or episodic?

> episodic

What is your age?

> 34

Are you male or female?

> female
For how many years have you had cluster headache now?

> 17
During sleep:

Does the pain wake you up?

> Yes

Or do you wake up before the pain starts?

> no

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.

> 100% the pain wakes me up

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

> yes

Or can you feel somehow in advance that the episode is about to start again?

> yes, usually advance warning.

Or have you experienced both?

> yes

Title: Re: Questionaire
Post by artonio7 on Apr 22^nd, 2007, 1:29am

Are you chronic or episodic?

> Chronic

What is your age?

> 51

Are you male or female?

> male

For how many years have you had cluster headaches now?

> 4

During sleep:

Does the pain wake you up?

> Yes

Or do you wake up before the pain starts?

> Yes

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.

> 90% the pain wakes me up

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

>

Or can you feel somehow in advance that the episode is about to start again?

>

Or have you experienced both?

>

Title: Re: Survey: Cluster and sleep + start of episode
Post by ClusterChuck on Apr 22^nd, 2007, 2:33am

Are you chronic or episodic?

> Chronic

What is your age?

> 57

Are you male or female?

> male (sort of ... LOL)

For how many years have you had cluster headache now?

> 28

During sleep:

Does the pain wake you up?

> Yes

Or do you wake up before the pain starts?

> Sometimes

If you answer both of the last two question with "yes" (both happens) - what happens most of the times? Perhaps you can give a percentage, of what happens most.

> 95% the pain wakes me up

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

>

Or can you feel somehow in advance that the episode is about to start again?

>

Or have you experienced both?

>

Chuck

Title: Re: Questionaire
Post by midwestbeth on Apr 22^nd, 2007, 9:56am

on 04/21/07 at 13:35:45, cluster wrote:

Are you chronic or episodic?

> Not sure yet. ch started a year ago & I'm still waiting for 30 days pf

What is your age?

> 40

Are you male or female?

> female

For how many years have you had cluster headache now?

> 1

During sleep:

Does the pain wake you up?

> Yes

Or do you wake up before the pain starts?

> No, I wake up in pain. I will have awful dreams when ch starts during sleep.

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.

>

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

>

Or can you feel somehow in advance that the episode is about to start again?

>

Or have you experienced both?

>

Title: Re: Survey: Cluster and sleep + start of episode
Post by Guiseppi on Apr 22^nd, 2007, 10:00am

Are you chronic or episodic?

Episodic

What is your age?

47

Are you male or female?

Male

For how many years have you had cluster headache now?

31

During sleep:

Does the pain wake you up?

Yes (a recent development. For less then 10 years, prior to that no wake up hits)

Or do you wake up before the pain starts?

No I dream about getting a headache, don't actually wake up until the head ache is establishing itself. This coincided with a changing sleep cycle as I've aged. I use to sleep like a zombie, nnothing could wake me up. As I age I sleep much more lightly.

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

>

Or can you feel somehow in advance that the episode is about to start again?

>

Or have you experienced both?

Both, but most of my cycles start with an almost panicy feeling of "oh no they're back" Occasionally they will start with a KIP 3 or 4 that comes from out of the blue.

Guiseppi

Title: Re: Survey: Cluster and sleep + start of episode
Post by pieface_49 on Apr 22^nd, 2007, 2:07pm

Are you chronic or episodic?

> Episodic

What is your age?

> 49

Are you male or female?

> Male

For how many years have you had cluster headache now?

> 14

During sleep:
Does the pain wake you up?

> Yes

Or do you wake up before the pain starts?

> Yes, I wake up like clockwork with no pain (fear?)

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.

> 65% the pain wakes me up. The more thought I give to the question the higher the percentage should be. I would say it is more like 90% the pain wakes me up. In my last cycle being awakened by fear was more prevalent at peak of the cycle.

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

> Yes and No. Not necessarily, shadows and an episode are two different things to me. Shadows are pain of one type or other. Anything less than 5 minutes in duration I would not consider an episode, yet, it is pain?

Or can you feel somehow in advance that the episode is about to start again?

> I think that clarifies the previous question. I cannot say whether the shadows will lead to a full blown episode. I can say there are certain indicators one might be coming, and not only coming, but quickly. With me, it can be one way or another. The sensations (tingling in the nasal passage, the dull pain, the sharp stab in my eye, clogged nasal passage) are some indicators, yet they may be shadows (the affliction letting me know it is not gone).

[/b]Or have you experienced both?[/b]

> Both

I am sure we can add to the questions being asked. Ask the Doc if he would like to hear some questions we think could be useful?

Donnie

Title: Re: Survey: Cluster and sleep + start of episode
Post by cluster on Apr 22^nd, 2007, 3:21pm

on 04/22/07 at 14:07:58, pieface_49 wrote:

I am sure we can add to the questions being asked. Ask the Doc if he would like to hear some questions we think could be useful?

Donnie

Hello Donnie,

thank you (and everybody else who answered so far too) very much for your answers.

Perhaps we can start another thread with patients questions?

This is just a "quick an' dirty survey", Dr. May has his reasons to ask these specific questions. You know the surveys on the left of this page?

pf wishes,
Friedrich

Title: Re: Survey: Cluster and sleep + start of episode
Post by Yorky on Apr 22^nd, 2007, 4:37pm

Please answer only if you are episodic: Are you chronic or episodic?

> episo

What is your age?

> 39

Are you male or female?

> male

For how many years have you had cluster headache now?

> 10+

During sleep:

Does the pain wake you up?

> Yes

Or do you wake up before the pain starts?

> Yes

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.

when in cycle..sleep not an option...but when i dose will

almost certainly need injection....

just managing to hopefully end..my latest cycle...with pred and oxygen

just happy to get a 5 day vacation...from the beast..
but fear ...he his ready to pounce .

Does an episode start for you with the first attack of pain?

> no..but it has done.

Or can you feel somehow in advance that the episode is about to start again?

>yes...either the neck (weeks prior to any proper hits)

or the jaw (weeks in advance )

or general shadows, that hang around...4 ages...before going bang .

when i try to rub the pain, away from my eyebrow...i know it is...showtime.

until the pain has a, full grip, of my eyeball....thats when the real
"battle begins"

Or have you experienced both?

> yes

Title: Re: Questionaire
Post by starlight on Apr 23^rd, 2007, 12:13pm

on 04/21/07 at 13:35:45, cluster wrote:

Are you chronic or episodic?

> Episodic

What is your age?

> 32

Are you male or female?

> female

For how many years have you had cluster headache now?

> 19 years

During sleep:

Does the pain wake you up?

> Yes

Or do you wake up before the pain starts?

> No

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.

> 100% the pain wakes me up

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

>usually, sometimes though, it will be the night following waking up with a strong shadow

Or can you feel somehow in advance that the episode is about to start again?

The past 2 episodes I get about a week's warning which involves severe insomnia, restless and extreme lack of appetitie.

>

Or have you experienced both?
Both
>

Title: Re: Survey: Cluster and sleep + start of episode
Post by burnt-toast on Apr 23^rd, 2007, 4:50pm

Are you chronic or episodic?

> Chronic - from the start with unpredictable remissions of 1 to a few weeks every few years.

What is your age?

> 48

Are you male or female?

> male

For how many years have you had cluster headache now?

> 13

During sleep: Does the pain wake you up?

> Yes

Or do you wake up before the pain starts?

> No

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.

>

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

>

Or can you feel somehow in advance that the episode is about to start again?

>

Or have you experienced both?

>

Title: Re: Survey: Cluster and sleep + start of episode
Post by thomas on Apr 23^rd, 2007, 5:25pm

Are you chronic or episodic?

> Episodic

What is your age?

> 35

Are you male or female?

> male

For how many years have you had cluster headache now?

> 15

During sleep:

Does the pain wake you up?

> Yes

Or do you wake up before the pain starts?

> No

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.

> 100% the pain wakes me up

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

> Sometimes

Or can you feel somehow in advance that the episode is about to start again?

> Yes most times I become very aggitated and have lots of "shadows" before the full blown CH cycle starts.

Or have you experienced both? Yes, some episodes have come on without any warning.

Title: Re: Survey: Cluster and sleep + start of episode
Post by phil_h on Apr 23^rd, 2007, 5:46pm

on 04/21/07 at 13:30:34, cluster wrote:

Title: Re: Survey: Cluster and sleep + start of episode
Post by phil_h on Apr 23^rd, 2007, 5:48pm

on 04/21/07 at 13:30:34, cluster wrote:

Title: Re: Survey: Cluster and sleep + start of episode
Post by George_J on Apr 23^rd, 2007, 5:51pm

No, the next post, phil. Not the first one.

;)

Best,

George

Title: Re: Survey: Cluster and sleep + start of episode
Post by cluster on Apr 30^th, 2007, 6:30am

Dear all,

Thank you very much for all your answers!

Anybody else?

Just click the following link to answer the questions:

=> Click here <= (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=chspecific;action=post;num=1177176634;quote=1;title=Post+reply;start=0)

(Sorry for being a pain in the neck.)

pf wishes
Friedrich

Title: Re: Questionaire
Post by barry_sword on Apr 30^th, 2007, 6:51am

on 04/21/07 at 13:35:45, cluster wrote:

Are you chronic or episodic?

> episodic

What is your age?

> 47

Are you male or female?

> male

For how many years have you had cluster headache now?

> 7

During sleep:

Does the pain wake you up?

> Yes

Or do you wake up before the pain starts?

> no

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.

>

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

>yes

Or can you feel somehow in advance that the episode is about to start again?

>no

Or have you experienced both?

>no

Title: Re: Survey: Cluster and sleep + start of episode
Post by Sandy_C on Apr 30^th, 2007, 2:33pm

Are you chronic or episodic?

> Episodic

What is your age?

> 60

Are you male or female?

> female

For how many years have you had cluster headache now?

> 8

During sleep:

Does the pain wake you up?

> No - my hits are mostly late evenings 8:30 or so, with two or three hits going until around midnight. Also have some daytime hits. Very few nighttime hits.

Or do you wake up before the pain starts?

> No

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.

>

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

> Only the very first episode

Or can you feel somehow in advance that the episode is about to start again?

> Shadows for a few days at regular times, scalp tingles

Or have you experienced both?

> yes

[/quote]

Title: Re: Questionaire
Post by jdadams86 on Apr 30^th, 2007, 7:14pm

on 04/21/07 at 13:35:45, cluster wrote:

Are you chronic or episodic?

> Episodic

What is your age?

> 20

Are you male or female?

> male

For how many years have you had cluster headache now?

> 5

During sleep:

Does the pain wake you up?

> Yes

Or do you wake up before the pain starts?

> Yes

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.

> 90% the pain wakes me up

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

>no

Or can you feel somehow in advance that the episode is about to start again?

>I feel it in my head. Not pain but definately a negative feeling.

Or have you experienced both?

>

Title: Re: Questionaire
Post by TonyG1 on Apr 30^th, 2007, 7:56pm

on 04/21/07 at 13:35:45, cluster wrote:

Are you chronic or episodic?

> Episodic

What is your age?

> 41

Are you male or female?

> male

For how many years have you had cluster headache now?

> 21

During sleep:

Does the pain wake you up?

> Yes

Or do you wake up before the pain starts?

> Yes

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.

> 95% of the time I wake up at the beginning of an attack. Edited to add -- 99% of the time, I get night hits. It is very rare for me to get hit while awake

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

> Yes, cycle kicks in with the first attack.

Or can you feel somehow in advance that the episode is about to start again?

> I generally note a sharper sense of smell prior to a cycle beginning and I dream a lot more vividly.

Or have you experienced both?

> Yes.

Title: Re: Survey: Cluster and sleep + start of episode
Post by BlueMeanie on Apr 30^th, 2007, 8:29pm

Are you chronic or episodic?

> Episodic

What is your age?

> 49

Are you male or female?

> Male

For how many years have you had cluster headache now?

> 27

During sleep:

Does the pain wake you up?

> Yes

Or do you wake up before the pain starts?

> Yes

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.

> 90% the pain wakes me up

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

> Yes

Or can you feel somehow in advance that the episode is about to start again?

> No

Or have you experienced both?

> Get shadows often when not in cycle. Cycle only starts when the first big one hits.

Title: Re: Questionaire
Post by GrandPotentate on Apr 30^th, 2007, 8:50pm

on 04/21/07 at 13:35:45, cluster wrote:

Are you chronic or episodic?

> Episodic

What is your age?

> 54

Are you male or female?

> male

For how many years have you had cluster headache now?

> 7

During sleep:

Does the pain wake you up?

> yes

Or do you wake up before the pain starts?

> yes

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.

> 60% I wake up before pain and wonder why. Then the first twinges and a minute or so of denial. Then I quickly run through the other stages of grief and take it for a walk.

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

> Yes.

Or can you feel somehow in advance that the episode is about to start again?

> no

Or have you experienced both?

>

Title: Re: Questionaire
Post by Maffumatt on Apr 30^th, 2007, 9:01pm

on 04/21/07 at 13:35:45, cluster wrote:

Are you chronic or episodic?

>
episodic
What is your age?

> 34

Are you male or female?

> male

For how many years have you had cluster headache now?

> 8

During sleep:

Does the pain wake you up?

> Yes

Or do you wake up before the pain starts?

> no

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.

> 90% the pain wakes me up

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

>no

Or can you feel somehow in advance that the episode is about to start again?

>yes

Or have you experienced both?

>yes

Title: Re: Survey: Cluster and sleep + start of episode
Post by sgarner on May 1^st, 2007, 1:34am

re you chronic or episodic?

> Chronic

What is your age?

> 47

Are you male or female?

> male

For how many years have you had cluster headache now?

> 14

During sleep:

Does the pain wake you up?

> Yes

Or do you wake up before the pain starts?

> no

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.

> 80% the pain wakes me up

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

>

Or can you feel somehow in advance that the episode is about to start again?

>

Or have you experienced both?

>

Title: Re: Survey: Cluster and sleep + start of episode
Post by BobG on May 1^st, 2007, 1:10pm

For more on a survey that has been on going for many years click on the 'cluster survey' button on the left side of your screen or

modified to remove the link.

Title: Surveys
Post by cluster on May 4^th, 2007, 8:24am

Thank you all for your answers,
Thank you Bob for the link,
Thank you DJ for this dear place and message board and the CH.com surveys on the left side of the screen.

Bob, the link doesn't work, these are the two CH.com surveys, they are great. @Everybody: Please fill in your answers, if you haven't done so yet:

http://www.clusterheadaches.com/survey/index.html

http://www.clusterheadaches.com/meds/index.html

Since 2005 the counters of both surveys haven't changed. Has nobody bothered to answer them? (Just a question.)

This free text survey here is just a quick one to answer the questions from Dr. May. I'll wait one more week for more answers and then I will summarize the results, post them here and send them to Dr. May.

Anybody who would like to participate: Just click the following link to answer the questions:

=> Click here <= (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=chspecific;action=post;num=1177176634;quote=1;title=Post+reply;start=0)

pf wishes and many thanks to all,
Friedrich

Title: Re: Questionaire
Post by aubmari on May 4^th, 2007, 10:32am

on 04/21/07 at 13:35:45, cluster wrote:

Are you chronic or episodic?

> Episodic

What is your age?

> 31

Are you male or female?

> female

For how many years have you had cluster headache now?

> 6+

During sleep:

Does the pain wake you up?

> Yes

Or do you wake up before the pain starts?

> no

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.

>

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

> No, It is a little strange. I usually a wek or less before I start get small pains in the CH area of my head and just know that they are coming. Doesn't start as a full blown episode right away

Or can you feel somehow in advance that the episode is about to start again?

> ~see above~

Or have you experienced both?

>

Title: Re: Surveys
Post by BobG on May 4^th, 2007, 12:20pm

on 05/04/07 at 08:24:37, cluster wrote:

Bob, the link doesn't work,

Sorry 'bout that. The 'cluster survey' Button on the left still works.

Title: Re: Survey: Cluster and sleep + start of episode
Post by BobG on May 4^th, 2007, 12:32pm

Are you chronic or episodic?
> eposodic

What is your age?
> 60

Are you male or female?
> male

For how many years have you had cluster headache now?
> approx. 33

During sleep:
Does the pain wake you up?
> Yes

Or do you wake up before the pain starts?
> yes

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.
> 95% the pain wakes me up

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?
> No, not really.

Or can you feel somehow in advance that the episode is about to start again?
> I haven’t had a cluster (episode) for about 7 years. But, back then I would have a week or so of daily shadows before the real attacks started.

Or have you experienced both?
> no, not that I can remember.

Title: Re: Questionaire
Post by orovillemike on May 10^th, 2007, 10:43pm

on 04/21/07 at 13:35:45, cluster wrote:

Are you chronic or episodic?

> Chronic
What is your age?

>38

Are you male or female?

> male

For how many years have you had cluster headache now?

> 3

During sleep:

Does the pain wake you up?

> Yes

Or do you wake up before the pain starts?

> no

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.

the pain wakes me up

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

>

Or can you feel somehow in advance that the episode is about to start again?

>

Or have you experienced both?

>

Title: Re: Questionaire
Post by michael on May 11^th, 2007, 2:28pm

on 04/21/07 at 13:35:45, cluster wrote:

Are you chronic or episodic?

> Episodic
What is your age?

> 54

Are you male or female?

> male

For how many years have you had cluster headache now?

> 40

During sleep:

Does the pain wake you up?

> No
Or do you wake up before the pain starts?

> Yes, wake up immediately before pain starts

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

>In the first 4 or 5 days I will get 2 short mild attacks

Or can you feel somehow in advance that the episode is about to start again?

>

Or have you experienced both?

>

Title: Re: Questionaire
Post by Surfdog on May 11^th, 2007, 9:23pm

on 04/21/07 at 13:35:45, cluster wrote:

Are you chronic or episodic?

> episodic

What is your age?

> 47

Are you male or female?

> male

For how many years have you had cluster headache now?

> 30

During sleep:

Does the pain wake you up?

> Yes

Or do you wake up before the pain starts?

> no

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.

> 90% the pain wakes me up

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

>yes

Or can you feel somehow in advance that the episode is about to start again?

>no

Or have you experienced both?

>no

Title: Re: Questionaire
Post by Zeitgeist on May 12^th, 2007, 7:57am

on 04/21/07 at 13:35:45, cluster wrote:

Are you chronic or episodic?

> Episodic

What is your age?

> 35

Are you male or female?

> male

For how many years have you had cluster headache now?

> 15

During sleep:

Does the pain wake you up?

> Yes

Or do you wake up before the pain starts?

> No

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.

> N/A

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

>

Or can you feel somehow in advance that the episode is about to start again?

>

Or have you experienced both?

>

Usually I can tell several weeks beforehand that the cycle/episode is about to start from minor, but characteristic sensations on the left side of my head

Title: Re: Survey: Cluster and sleep + start of episode
Post by jaynik on May 12^th, 2007, 6:08pm

on 04/21/07 at 13:30:34, cluster wrote:

Title: Results
Post by cluster on May 14^th, 2007, 4:45am

Thank you all!

A brief summary of the results:

29 people answered here at CH.com + 14 answers from the German CK-Wissen website = 43 answers in total.

Of these 43: 30 are episodic, 11 are chronic and two are suffering their first episode. 34 are male (incl. one "sort of")) and 9 are female.

Average age is 44, range from 20 to 61.

The 43 responding people in total have suffered CH for 641 years, average 15 years, range 8 months to 40 years.

Age at onset was 29 as the average, range from 12 years to 52 years.

One person does not have nightime hits and yorkshiremen don't sleep during episodes? (Sorry Yorky, I shouldn't be "yoking" about this.)

Of the 41 remaining answers two persons always wake up before the pain starts - 17 always wake up caused by the pain and 22 experience both. The percentage of "pain wakes me up" given by the 22 who experience both is "82% the pain wakes me" up as an average, range is from 40% - 95%.

No real surprise, is it ?

Episodics:

Does an episode start for you with the first attack of pain? - 30%
Or can you feel somehow in advance that the episode is about to start again? - 23%
Or have you experienced both? - 47%

I will sent these results to Dr. A. May today - and hope this helps to find the cure. :)

Again, thank you all for participating and pf wishes,
Friedrich

(edit to get the numbers right)

Title: Re: Questionaire
Post by Joyce on May 14^th, 2007, 9:18am

on 04/21/07 at 13:35:45, cluster wrote:

Are you chronic or episodic?

> Chronic

What is your age?

> 62

Are you male or female?

> female

For how many years have you had cluster headache now?

> 12

During sleep:

Does the pain wake you up?

> Yes

Or do you wake up before the pain starts?

> no

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.

> 90% the pain wakes me up

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

>

Or can you feel somehow in advance that the episode is about to start again?

>

Or have you experienced both?

>

Title: Re: Questionaire
Post by Ray on May 17^th, 2007, 7:02pm

on 04/21/07 at 13:35:45, cluster wrote:

Are you chronic or episodic?

> Episodic

What is your age?

> 49

Are you male or female?

> male

For how many years have you had cluster headache now?

> 20

During sleep:

Does the pain wake you up?

> Yes

Or do you wake up before the pain starts?

> No

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.

> N/A

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

> No

Or can you feel somehow in advance that the episode is about to start again?

> Yes

Or have you experienced both?

> Yes

Title: Re: Questionaire
Post by Shedz on May 17^th, 2007, 8:02pm

on 04/21/07 at 13:35:45, cluster wrote:

Are you chronic or episodic?

> Episodic

What is your age?

> 35

Are you male or female?

> male

For how many years have you had cluster headache now?

> 9

During sleep:

Does the pain wake you up?

> Yes

Or do you wake up before the pain starts?

> no

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most. [/b[b]Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

>yes

Or can you feel somehow in advance that the episode is about to start again?

>no I know they always start in the autumn

Or have you experienced both?

>

Title: Re: Questionaire
Post by rolo65 on May 19^th, 2007, 2:19am

on 04/21/07 at 13:35:45, cluster wrote:

Are you chronic or episodic?

> Chronic

What is your age?

> 41

Are you male or female?

> male

For how many years have you had cluster headache now?

> 5

During sleep:

Does the pain wake you up?

> Yes

Or do you wake up before the pain starts?

> sometimes will go fast with O2

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.

> 95% the pain wakes me up

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

>

Or can you feel somehow in advance that the episode is about to start again?

>

Or have you experienced both?

>

Title: No answers any more please!
Post by cluster on May 19^th, 2007, 9:14am

Dear all,

I have already done the evaluation (see above) and send the results to Dr. May. - I will include the additional answers and post an update but I would not like to do this for the rest of my life now...

Thank you.

pf wishes,
Friedrich

Title: Updated results
Post by cluster on May 22^nd, 2007, 3:47pm

Thank you all!

Update of the results:

33 people answered here at CH.com + 16 answers from the German CK-Wissen website = 49 answers in total.

Of these 49: 34 are episodic, 13 are chronic and two are suffering their first episode. 38 are male and 11 are female.

Average age is 44, range from 20 to 62.

The 49 responding people in total have suffered CH for 743 years, average 15 years, range 8 months to 40 years.

Age at onset was 29 as the average, range from 10 years to 52 years.

One person does not have night time hits and one doesn't sleep during episodes?

Of the 47 remaining answers two persons always wake up before the pain starts - 22 always wake up caused by the pain and 25 experience both. The percentage of "pain wakes me up" given by the 25 who experience both is "71% the pain wakes me" up as an average, range is from 5% - 95%.

Episodics:

Does an episode start for you with the first attack of pain? - 32%
Or can you feel somehow in advance that the episode is about to start again? - 24%
Or have you experienced both? - 44%

Again, thank you all for participating and pf wishes,
Friedrich

Title: Re: Questionaire
Post by pingu1981 on May 24^th, 2007, 11:59am

on 04/21/07 at 13:35:45, cluster wrote:

Are you chronic or episodic?

> Episodic

What is your age?

> 26

Are you male or female?

> Female

For how many years have you had cluster headache now?

> About 8

During sleep:

Does the pain wake you up?

> Yes

Or do you wake up before the pain starts?

> Sometimes I wake up at my usual time to have an attack even though I don't have one.

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.

> I usually wake up first

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

> No

Or can you feel somehow in advance that the episode is about to start again?

> Usually

Or have you experienced both?

>

Title: Re: Questionaire
Post by jimyhertz on May 25^th, 2007, 11:02am

on 04/21/07 at 13:35:45, cluster wrote:

Are you chronic or episodic?

> episodic

What is your age?

>40

Are you male or female?

> male

For how many years have you had cluster headache now?

> 5

During sleep:

Does the pain wake you up?

> Yes

Or do you wake up before the pain starts?

> yes

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.

> 90% the pain wakes me up

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

>yes

Or can you feel somehow in advance that the episode is about to start again?

>usually starts with congestion on left side, but not always ch when that hapens

Or have you experienced both?

>both

Title: Re: Questionaire
Post by Paul98 on May 25^th, 2007, 1:02pm

on 04/21/07 at 13:35:45, cluster wrote:

Are you chronic or episodic?

> Chronic

no

What is your age?

51

Are you male or female?

male

For how many years have you had cluster headache now?

21

During sleep:

Does the pain wake you up?

yes

Or do you wake up before the pain starts?

sometimes

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.

80% of time pain wakes me up

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

no

Or can you feel somehow in advance that the episode is about to start again?

yes, 2 weeks before cycle, sleep patterns change and eyesight changes

Or have you experienced both?

>

Title: Re: Questionaire
Post by Rats on May 29^th, 2007, 12:35am

on 04/21/07 at 13:35:45, cluster wrote:

Are you chronic or ?

> episodic

What is your age?

> 39

Are you male or female?

> female

For how many years have you had cluster headache now?

> 23

During sleep:

Does the pain wake you up?

> Yes

Or do you wake up before the pain starts?

> Yes

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.

> depends

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

>NO

Or can you feel somehow in advance that the episode is about to start again?

>Yes

Or have you experienced both?

>No

Title: Re: Questionaire
Post by kayarr on May 29^th, 2007, 8:25am

on 04/21/07 at 13:35:45, cluster wrote:

Are you chronic or episodic?

> Chronic

What is your age?

> 51

Are you male or female?

> male

For how many years have you had cluster headache now?

> 11

During sleep:

Does the pain wake you up?

> Yes

Or do you wake up before the pain starts?

> Yes

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.

> 90% the pain wakes me up

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

>

Or can you feel somehow in advance that the episode is about to start again?

>

Or have you experienced both?

>

Jeff's stats

Title: Re: Questionaire
Post by puppetonastring on Jun 2^nd, 2007, 9:16am

on 04/21/07 at 13:35:45, cluster wrote:

Are you chronic or episodic?

Episodic

What is your age?

40

Are you male or female?

Male

For how many years have you had cluster headache now?

20

During sleep:

Does the pain wake you up?

Yes

Or do you wake up before the pain starts?

Yes

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.

When these started, the pain would wake me 100% of the time.
I find that I'm waking now just before the real pain starts

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

It builds from twinge through full bloom over a week or so depending upon how well I treat on-set.

Or can you feel somehow in advance that the episode is about to start again?

No, for me the twinges signal the on-set.

Or have you experienced both?

>

Title: Re: Questionaire
Post by mabus on Jun 2^nd, 2007, 8:16pm

on 04/21/07 at 13:35:45, cluster wrote:

Are you chronic or episodic?

> Episodic

What is your age?

> 47

Are you male or female?

> male

For how many years have you had cluster headache now?

> 24

During sleep:

Does the pain wake you up?

> Yes

Or do you wake up before the pain starts?

> Yes

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.

> 90-95% the pain wakes me up

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

>"Yes" It starts with just a twinge

Or can you feel somehow in advance that the episode is about to start again?

> "Yes"

Or have you experienced both?

> Yes

Title: Re: Questionaire
Post by LindsayLoo on Jun 2^nd, 2007, 11:24pm

on 04/21/07 at 13:35:45, cluster wrote:

Are you chronic or episodic?

> Don't know yet, new to them but 19 days so far

What is your age?

> 30

Are you male or female?

> female

For how many years have you had cluster headache now?

> n/a

During sleep:

Does the pain wake you up?

> Yes

Or do you wake up before the pain starts?

> Yes

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.

> 90% the pain wakes me up

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

>

Or can you feel somehow in advance that the episode is about to start again?

>

Or have you experienced both?

>

Title: Re: Survey: Cluster and sleep + start of episode
Post by Kris_in_SJ on Jun 3^rd, 2007, 10:26am

1. Episodic
2. 52
3. 13 years
4. No clusters during sleep - always late evening before bed.
5. Yes, episode always starts with attack of pain
6. Sometimes, I notice a change in my sleep patterns just prior to a cycle.
7. Yes

Kris

Title: Re: Questionaire
Post by Thorns on Jun 3^rd, 2007, 5:46pm

on 04/21/07 at 13:35:45, cluster wrote:

Are you chronic or episodic?

> Episodic

What is your age?

> 29

Are you male or female?

> male

For how many years have you had cluster headache now?

> 9

During sleep:

Does the pain wake you up?

> Yes

Or do you wake up before the pain starts?

> Yes

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.

> 50% the pain wakes me up

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

>Yes, A cycle usually starts for me with very few attacks over the course of a few weeks that gradually build until it's 2-3/day (lasting about 3 weeks) followed by a decline in the cycle the same as it started but in reverse.

Or can you feel somehow in advance that the episode is about to start again?

>Yes, I know when a cycle is about to begin based on a disruption in my sleep pattern (e.g. no sleeping well throughout the night) and my mood changes close to the beginning of a cycle. My cycles are also closely tied to daylight savings times.

Or have you experienced both?

>
Yes

Title: Re: Questionaire
Post by JayMoe on Jun 4^th, 2007, 7:38pm

on 04/21/07 at 13:35:45, cluster wrote:

Are you chronic or episodic?

> Chronic

What is your age?

> 26

Are you male or female?

female

For how many years have you had cluster headache now?

> 1.5

During sleep:

Does the pain wake you up?

> Yes

Or do you wake up before the pain starts?

> Yes

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.

> 80% the pain wakes me up

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

>

Or can you feel somehow in advance that the episode is about to start again?

>

Or have you experienced both?

>

Title: Re: Questionaire
Post by Kate in Oz on Jun 4^th, 2007, 9:03pm

on 04/21/07 at 13:35:45, cluster wrote:

Are you chronic or episodic?

> Episodic

What is your age?

> 38

Are you male or female?

> female

For how many years have you had cluster headache now?

> 21

During sleep:

Does the pain wake you up?

> Yes

Or do you wake up before the pain starts?

> Every so often

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.

> 98% the pain wakes me up

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

> Usually know it is coming.... slight twinge in temple for a few weeks prior to a cycle starting

Or can you feel somehow in advance that the episode is about to start again?

>As above, know its coming then BAM!

Or have you experienced both?

>I guess since I was diagnosed and became more aware of the cyclical nature of this disorder I know what to look for ??? BTW went the first 15+ yrs without being properly diagnosed.

Title: Re: Questionaire
Post by Wayne on Jun 7^th, 2007, 3:32pm

on 04/21/07 at 13:35:45, cluster wrote:

Are you chronic or episodic?

> Episodic

What is your age?

> 40

Are you male or female?

> male

For how many years have you had cluster headache now?

> 4

During sleep:

Does the pain wake you up?

> Yes

Or do you wake up before the pain starts?

> No

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.

>

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

>Yes

Or can you feel somehow in advance that the episode is about to start again?

>

Or have you experienced both?

>

Title: Re: Questionaire
Post by Melvyn on Jun 20^th, 2007, 6:34am

on 04/21/07 at 13:35:45, cluster wrote:

Are you chronic or episodic?

> episodic
What is your age?

> 57
Are you male or female?

> male

For how many years have you had cluster headache now?

> 10
During sleep:

Does the pain wake you up?

> Yes

Or do you wake up before the pain starts?

> No

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.

> 90% the pain wakes me up

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

>Yes - ache in right sinus area
Or can you feel somehow in advance that the episode is about to start again?

>

Or have you experienced both?

>

Title: Re: Questionaire
Post by DennisM1045 on Jun 20^th, 2007, 6:47am

on 04/21/07 at 13:35:45, cluster wrote:

Are you chronic or episodic?

> Episodic

What is your age?

> 46

Are you male or female?

> male

For how many years have you had cluster headache now?

> 12

During sleep:

Does the pain wake you up?

> Yes

Or do you wake up before the pain starts?

> Yes

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.

> 90% the pain wakes me up

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

>

Or can you feel somehow in advance that the episode is about to start again?

>

Or have you experienced both?

>I have experienced both though I usually 'feel' the onset coming.

Title: Re: Survey: Cluster and sleep + start of episode
Post by kcopelin on Jun 20^th, 2007, 10:27am

Friedrich,
See what you've started? Once you get us clusterheads riled up its really hard for us to stop. You very respectfully asked that we not cause you make a life's work out of this survey-so I'm not going to answer any of your questions.....

signed,
chronic 50 yr old female, CH 1/2 of my life (that's 25 years using the new math)pain used to wake me, but am taking enough sleep stuff to knock out a rhino. never relax-never rest-NEVER NAP!!!
;;D

Title: Re: Survey: Cluster and sleep + start of episode
Post by cluster on Jun 20^th, 2007, 1:23pm

Hello my dear "chronic 50 yr old female, CH 1/2 of my life (that's 25 years using the new math)pain used to wake me, but am taking enough sleep stuff to knock out a rhino. never relax-never rest-NEVER NAP!!! ;;D "

Thank you very much! (Kathy?)

Perhaps I'll sum the additional answers up when I am retired in about 20 years. - If somebody else wants to do that earlier than me, I won't mind. The evaluation done above is with Dr. May.

Thank you very much to everybody who answered the questions!

btw: In 1952 E. Charles Kunkle wrote: "In two-thirds of the patients the attacks always or commonly began during sleep." - It is still the same, isn't it?

EC Kunkle coined the term "cluster" headache. In his 1952 article the word "cluster" is always in " ":

http://ck-wissen.de/ckwiki/images/thumb/3/3d/Kunkle_Cluster_Pattern.png/500px-Kunkle_Cluster_Pattern.png

pf wishes
the guy who asked a question and couldn't stop getting answers, chronic since 6 yrs, 44 yr old male, never sleeps at all, and is getting silly after 2 pf months ... ;)

Title: Re: Questionaire
Post by txbeck on Jun 21^st, 2007, 5:32pm

on 04/21/07 at 13:35:45, cluster wrote:

Are you chronic or episodic?

> Episodic

What is your age?

> 66

Are you male or female?

> female

For how many years have you had cluster headache now?

> 43

During sleep:

Does the pain wake you up?

> No

Or do you wake up before the pain starts?

> Yes

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.

>

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

>Yes

Or can you feel somehow in advance that the episode is about to start again?

>Yes

Or have you experienced both?

>Yes, Neck and shoulder pain and spasm seem to foreshadow and follow an episode.

Title: Re: Questionaire
Post by PV on Jun 22^nd, 2007, 6:10pm

on 04/21/07 at 13:35:45, cluster wrote:

Are you chronic or episodic?

> episodic

What is your age?

> 48

Are you male or female?

> male

For how many years have you had cluster headache now?

> 30

During sleep:

Does the pain wake you up?

> Yes

Or do you wake up before the pain starts?

> Yes

If you answer both of the last two question with “yes” (both happens) – what happens most of the times? Perhaps you can give a percentage, of what happens most.

> 80% the pain wakes me up

Please answer only if you are episodic:

Does an episode start for you with the first attack of pain?

>no

Or can you feel somehow in advance that the episode is about to start again?

>yes

Or have you experienced both?

>