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Topic: Survey: Cluster and sleep + start of episode (Read 1865 times) |
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cluster
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Survey: Cluster and sleep + start of episode
« on: Apr 21st, 2007, 1:30pm » |
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Dear all,
this gentleman has a couple of questions.
I think we should support him with answers.
Priv.-Doz. Dr. med. Arne May
Dr. May is one of the European experts on headaches, especially cluster headaches. (He works here.)
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
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cluster
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Questionaire
« Reply #1 on: Apr 21st, 2007, 1:35pm » |
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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?
>
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Rosybabe
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Re: Questionaire
« Reply #2 on: Apr 21st, 2007, 3:28pm » |
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on Apr 21st, 2007, 1:35pm, 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
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JohnC
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Re: Questionaire
« Reply #3 on: Apr 21st, 2007, 5:51pm » |
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on Apr 21st, 2007, 1:35pm, 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?
>
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This is not much of a questionare ... but I'll answer ya
on Apr 21st, 2007, 1:35pm, 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
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George_J
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Re: Questionaire
« Reply #5 on: Apr 21st, 2007, 9:47pm » |
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on Apr 21st, 2007, 1:35pm, 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?
>
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Re: Questionaire
« Reply #6 on: Apr 21st, 2007, 11:17pm » |
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on Apr 21st, 2007, 1:35pm, 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
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| « Last Edit: Apr 21st, 2007, 11:17pm by Skyhawk5 » |
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Trooper
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Re: Questionaire
« Reply #7 on: Apr 22nd, 2007, 12:41am » |
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on Apr 21st, 2007, 1:35pm, 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
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artonio7
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Re: Questionaire
« Reply #8 on: Apr 22nd, 2007, 1:29am » |
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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?
>
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ClusterChuck
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Re: Survey: Cluster and sleep + start of episode
« Reply #9 on: Apr 22nd, 2007, 2:33am » |
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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
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| « Last Edit: Apr 22nd, 2007, 2:35am by ClusterChuck » |
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midwestbeth
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Re: Questionaire
« Reply #10 on: Apr 22nd, 2007, 9:56am » |
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on Apr 21st, 2007, 1:35pm, 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?
>
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Guiseppi
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Re: Survey: Cluster and sleep + start of episode
« Reply #11 on: Apr 22nd, 2007, 10:00am » |
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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
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pieface_49
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Re: Survey: Cluster and sleep + start of episode
« Reply #12 on: Apr 22nd, 2007, 2:07pm » |
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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
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| « Last Edit: Apr 22nd, 2007, 2:16pm by pieface_49 » |
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cluster
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Re: Survey: Cluster and sleep + start of episode
« Reply #13 on: Apr 22nd, 2007, 3:21pm » |
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on Apr 22nd, 2007, 2:07pm, 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 |
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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
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Yorky
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Re: Survey: Cluster and sleep + start of episode
« Reply #14 on: Apr 22nd, 2007, 4:37pm » |
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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
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| « Last Edit: Apr 22nd, 2007, 4:50pm by Yorky » |
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Re: Questionaire
« Reply #15 on: Apr 23rd, 2007, 12:13pm » |
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on Apr 21st, 2007, 1:35pm, 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
>
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burnt-toast
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Re: Survey: Cluster and sleep + start of episode
« Reply #16 on: Apr 23rd, 2007, 4:50pm » |
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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?
>
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thomas
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Re: Survey: Cluster and sleep + start of episode
« Reply #17 on: Apr 23rd, 2007, 5:25pm » |
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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.
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phil_h
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Re: Survey: Cluster and sleep + start of episode
« Reply #18 on: Apr 23rd, 2007, 5:46pm » |
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on Apr 21st, 2007, 1:30pm, cluster wrote:Dear all,
this gentleman has a couple of questions.
I think we should support him with answers.
Priv.-Doz. Dr. med. Arne May
Dr. May is one of the European experts on headaches, especially cluster headaches. (He works here.)
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
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phil_h
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Re: Survey: Cluster and sleep + start of episode
« Reply #19 on: Apr 23rd, 2007, 5:48pm » |
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on Apr 21st, 2007, 1:30pm, cluster wrote:Dear all,
this gentleman has a couple of questions.
I think we should support him with answers.
Priv.-Doz. Dr. med. Arne May
Dr. May is one of the European experts on headaches, especially cluster headaches. (He works here.)
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
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George_J
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Re: Survey: Cluster and sleep + start of episode
« Reply #20 on: Apr 23rd, 2007, 5:51pm » |
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No, the next post, phil. Not the first one.
Best,
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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cluster
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Re: Survey: Cluster and sleep + start of episode
« Reply #21 on: Apr 30th, 2007, 6:30am » |
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Dear all,
Thank you very much for all your answers!
Anybody else?
Just click the following link to answer the questions:
=> Click here <=
(Sorry for being a pain in the neck.)
pf wishes
Friedrich
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Re: Questionaire
« Reply #22 on: Apr 30th, 2007, 6:51am » |
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on Apr 21st, 2007, 1:35pm, 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
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Re: Survey: Cluster and sleep + start of episode
« Reply #23 on: Apr 30th, 2007, 2:33pm » |
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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
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jdadams86
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Re: Questionaire
« Reply #24 on: Apr 30th, 2007, 7:14pm » |
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on Apr 21st, 2007, 1:35pm, 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?
>
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| « Last Edit: Apr 30th, 2007, 7:15pm by jdadams86 » |
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