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        Cluster Headache Help and Support >> Cluster Headache Specific >> Survey - At what Kip Level can you lay down
        
(Message started by: Sean_C on Apr 21st, 2007, 11:10pm)
Title: Survey - At what Kip Level can you lay down
Post by Sean_C on Apr 21st, 2007, 11:10pm
and go to sleep during your attack. Please respond, that goes for everybody ;)

Sean.......................................
Title: Re: Survey - At what Kip Level can you lay down
Post by E-Double on Apr 21st, 2007, 11:19pm
I can not sleep even with the slightest twinge.
I get too restless.
I have been awaken by I guess a lower level and it sure hurts but nothing to run out of the room for. Typically I could sit up rub my neck and lay down IF it doesn't escalte.

I know that Irish men from Massachussetts can sleep during their tension headaches :-*
Title: Re: Survey - At what Kip Level can you lay down
Post by Sean_C on Apr 21st, 2007, 11:25pm

on 04/21/07 at 23:19:00, E-Double wrote:
I know that Irish men from Massachussetts can sleep during their tension headaches :-*


LMAO I love you too bro  ;;D

Cheers,

Sean.......................... ;;D
Title: I Re: Survey - At what Kip Level can you lay down
Post by Skyhawk5 on Apr 21st, 2007, 11:32pm
Even at  K-1, I am too afraid to fall asleep. Thats the Beasts fav time for me. If I do lay down, one eye is open trying to catch any increase in level.

If no sleep for a couple days it changes a little.
Title: Re: Survey - At what Kip Level can you lay down
Post by Racer1_NC on Apr 21st, 2007, 11:50pm

on 04/21/07 at 23:19:00, E-Double wrote:
I can not sleep even with the slightest twinge.


Ditto.....
Title: Re: Survey - At what Kip Level can you lay down
Post by Trooper on Apr 22nd, 2007, 12:23am
99% of mine happen in a dead sleep. My usual routine is to get up, take a trex pill and thrash around for an hour, by then I am worn out and fall into a deep beatiful sleep. My head has been throbbing all day today though, scared to go to sleep right now.
Title: Re: Survey - At what Kip Level can you lay down
Post by George_J on Apr 22nd, 2007, 12:32am
Cannot lay down or sleep during a hit, no matter how small.  

I can fall asleep with the "afterburn" when it fades to some extent--but not during a hit.

Best,

George
Title: Re: Survey - At what Kip Level can you lay down
Post by BB on Apr 22nd, 2007, 2:01am

According to what doctors believe goes on in the brain during a CH attack, its not biologically possible to go to sleep. At the start of an CH attack, serotonin level start to rise, thats what causes the inflammation of the trigeminal nerves and the hot burning sensation as well as the heat in the body. Serotonin is a "wake up" neurotransmitter, it switches off the sleep centre.

At night during REM sleep, serotonin level also rises while melatonin level drops, this leads to the start of a CH attack and it wakes you up, thats why and how some people can wake up before the pain starts.

I am not a CHer so I cant speak from personal experience, I can only speak from a biological/medical point of view. Hope you may find it interesting.

Painfree wishes to you.

Annette
Title: Re: Survey - At what Kip Level can you lay down
Post by artonio7 on Apr 22nd, 2007, 2:19am
I awaken to the pain and could never consider going to sleep during a hit but have fallen to sleep directly after one. Rinse repeat. :-[

with warm regards,
Tony
Title: Re: Survey - At what Kip Level can you lay down
Post by ClusterChuck on Apr 22nd, 2007, 2:30am

on 04/22/07 at 02:19:53, artonio7 wrote:
I awaken to the pain and could never consider going to sleep during a hit but have fallen to sleep directly after one. Rinse repeat. :-[
with warm regards,Tony

Ditto ....

Thanks, Annette!!  I found that fascinating!  I always thought it was my fear or dread that kept me from dropping off with a little low level hit ...

Chuck
Title: Re: Survey - At what Kip Level can you lay down
Post by artonio7 on Apr 22nd, 2007, 2:33am
When I'm getting a hit I either lay down and "try in futility" to relax or sit and rock. If I am laying down during a Kip 9 or 10 it's impossible to lay still. I try to avoid screaming like a maniac and bouncing off walls because that would be counter to relaxing and there is a part of me that says "screaming and carrying on is giving in to the beast", Sadly,  I can't say I'm always able to restrain myself.

When I'm awakened by a Cluster headache I can never consider going to sleep during a hit. I have fallen to sleep directly after a hit. Rinse repeat. :-[

with warm regards,
Tony
Title: Re: Survey - At what Kip Level can you lay down
Post by ClusterChuck on Apr 22nd, 2007, 2:39am

on 04/22/07 at 02:33:00, artonio7 wrote:
I have fallen to sleep directly after a hit.

I sometimes wonder if it is more of a passing out from total physical and emotional exhaustion ..

Chuck
Title: Re: Survey - At what Kip Level can you lay down
Post by artonio7 on Apr 22nd, 2007, 2:49am

on 04/22/07 at 02:39:07, Cluster-Chuck wrote:
I sometimes wonder if it is more of a passing out from total physical and emotional exhaustion ..

Chuck


Weird thing that happens to me is, I can be trudging along and suddenly cannot keep my eyes opened. I have no choice but to go lay down... then I halfway fall asleep and get hit. The compulsion to sleep is almost a component of the hit. I'm curious to know what kind of two step the hypothalamus is doing when this all comes down.

with warm regards,
Tony
Title: Re: Survey - At what Kip Level can you lay down
Post by UN solved on Apr 22nd, 2007, 6:37am
K1 - K3  --- I can sleep
K4 - K5  --- I can maybe lie down. Getting restless and starting to move around
K6  --- No lying down. Worried about it getting worse.
K7  --- I'm up holding my eye, worried about it getting worse, hold my eye and starting a slow rock. Have a jab close by and debating on using it yet or not.
K8  --- I hate it. Life is sucking. Jabbing myself with Imitrex. Cold/hot rags on my eye. Starting to cuss under my breath. No lying down.
K9 --- Oh crap !! QUICK JAB ASAP !! Rocking/moaning, hot rags, cold rags,  quiet and darkness. Cussing out loud. Can't be touched ! No lying down.
K10 --- Move out of my way or I'll knock ya down!! Quick JAB !! Cussing loudly !! rocking/moaning/hot/cold rags/ ... ready to go to the ER wanting to be unconscious !! No lying down. Kill me now and get it over with. Insane pain !!

That about sums it up  ;;D

UNsolved
Title: Re: Survey - At what Kip Level can you lay down
Post by MaxPayne on Apr 22nd, 2007, 7:04am
Usually get shadow late at nite watching tv or something, get restless and there is no chance of going to bed then. Go to bed, wake up at 1:30 (Like clockwork) with a kip 2 that rapidly escalates to kip 8 (If lucky and not peaking in cycle) Pass out 45-60 minutes later, only to wake up again at 3:30 with kip 5-7. Pass out 45 minutes later, but wake up again at 6:30 with baaaad kip 9-10 which usually lasts for an hour... time to leave for work if able to. If not; homeoffice that day. No hits during daytime except the odd one now and then. When peaking 4 - 6 ch's during nite for about a week. No rest for the wicked, not even the extremly wicked ;)
Title: Re: Survey - At what Kip Level can you lay down
Post by barry_sword on Apr 22nd, 2007, 7:26am
Very light sleeper so no sleep for me until about an hour after an attack. Even a shadow will keep me awake.
Damn I miss a good nights sleep!! :P

  Barry
Title: Re: Survey - At what Kip Level can you lay down
Post by burnt-toast on Apr 22nd, 2007, 9:20am
Personally I've never been able to sleep through even low level attacks.  

I seem to pass out when strong attacks are abating but as soon as another one begins I get snapped out of sleep by the first signs of the new attack.

Tom  
Title: Re: Survey - At what Kip Level can you lay down
Post by midwestbeth on Apr 22nd, 2007, 9:40am
Cannot lay down at all while getting hit.  Sleep comes only after the beast has left.  I have cried, cussed and begged the beast to leave because I was so exhausted and all I wanted to do was sleep.

How can some lay down during a hit.  I tried and my head felt like it was going to explode.  The pressure and pain is just too much.

Beth
Title: Re: Survey - At what Kip Level can you lay down
Post by BMoneeTheMoneeMan on Apr 22nd, 2007, 12:32pm
Well, certainly cant sleep when a cluster is ramping up, cant even lie down.  
When it is going away, I cant sleep until it has gone away completely.  If I stop huffing the O2 before it has completely stopped, it will ramp up pretty quick.

And I can not lie down with anything higher than a shadow.  Sometimes I do get on the floor or the bed on all 4s like I am receiving it doggy style.  This is a good position to hold my head and to rock.  I can only do this for K-4 to K-6 though, anything higher than that I need to dance.
Title: Re: Survey - At what Kip Level can you lay down
Post by aloneuk on Apr 22nd, 2007, 12:44pm
[quote author=George_J link=board=chspecific;num=1177211403;start=0#6 date=04/22/07 at 00:32:01]Cannot lay down or sleep during a hit, no matter how small.  


ditto !!
Title: Re: Survey - At what Kip Level can you lay down
Post by pieface_49 on Apr 22nd, 2007, 1:01pm
It seems somewhere between a Kip1-2 and I may be able to sleep.  Only after the fear of a higher level hit has left and the realization it is a shadow appears to be the truth.  Often times I try to train my mind to relax during the scenario Kip1-2.  Sometimes it seems to work and others times it does not.  Depends on what the "beast" wants to do.  Also agree with physical and emotional drainage helps.  Sleep seems to be more more likely at the end of my cycle.  Exhaustion is given, and perhaps the serotonin levels are are used up?

Donnie
Title: Re: Survey - At what Kip Level can you lay down
Post by blmiller84 on Apr 22nd, 2007, 1:34pm
I can't really sleep during any level of pain during an attack. After the attack I can go to sleep. If it is a bad one, I basically just pass out afterwards. During at any level above 1 or 2, I can't even lay down at all. Just too restless and laying down seems to make the pain/pressure worse.
Title: Re: Survey - At what Kip Level can you lay down
Post by BikerBob on Apr 22nd, 2007, 1:59pm

on 04/22/07 at 02:01:39, BB wrote:
According to what doctors believe goes on in the brain during a CH attack, its not biologically possible to go to sleep. At the start of an CH attack, serotonin level start to rise, thats what causes the inflammation of the trigeminal nerves and the hot burning sensation as well as the heat in the body. Serotonin is a "wake up" neurotransmitter, it switches off the sleep centre.

At night during REM sleep, serotonin level also rises while melatonin level drops, this leads to the start of a CH attack and it wakes you up, thats why and how some people can wake up before the pain starts.

I am not a CHer so I cant speak from personal experience, I can only speak from a biological/medical point of view. Hope you may find it interesting.

Painfree wishes to you.

Annette

I don't believe you. I have no idea how you come up with your crazy opinions.

It's not increased serotonin levels causing inflammation of the trigeminal nerves that causes CH pain. It's the hypothalamus, which is the "biological clock", causing dilation of the cranial blood vessels that exert pressure on the trigeminal nerve system. Sumatriptan, O2 and caffeine are vasoconstrictors. That's how they abort CH by correcting the dilation of the blood vessels. They do not decrease serotonin levels. Serotonin is also a vasoconstrictor. Sumatriptan is a serotonin receptor agonist, not antagonist. There's no such thing as a "sleep centre" that can be switched on and off.

BB
Title: Re: Survey - At what Kip Level can you lay down
Post by cluster on Apr 22nd, 2007, 3:06pm
No way for me to go back to sleep during an attack. I sometimes go back to bed with some "pain left", knowing that this remaining pain will go away in about 10 - 15 minutes.

pf wishes
Friedrich
Title: Re: Survey - At what Kip Level can you lay down
Post by TxBasslady on Apr 22nd, 2007, 3:16pm

on 04/22/07 at 00:32:01, George_J wrote:
Cannot lay down or sleep during a hit, no matter how small.  


My buddy George says it best!!

Jean
Title: Re: Survey - At what Kip Level can you lay down
Post by Sandy_C on Apr 22nd, 2007, 5:14pm
Sleep?  Not even at a K1.  Lay down?  Yes, up to about a K5, K6, (I call that conserving my energy for what may come).  

Beyond that, no way, I must be upright, whether in a chair, rocking, tapping my feet, holding my head, on my feet, pacing around the room.  As the hit ramps, so do I.

Please, don't ask me to describe what I did with a K9 and above  . .  I was not fit for human companionship.

Sandy
Title: Re: Survey - At what Kip Level can you lay down
Post by Moridin2002 on Apr 22nd, 2007, 5:55pm

on 04/22/07 at 00:23:35, Trooper wrote:
99% of mine happen in a dead sleep. My usual routine is to get up, take a trex pill and thrash around for an hour, by then I am worn out and fall into a deep beatiful sleep. My head has been throbbing all day today though, scared to go to sleep right now.


Thats exactly what i do too. I get my hits @ night or early morning. I get up and take some painkillers and
walk around or take a shower or sitting on a chair rocking for an hour then i go to bed exhausted. Im
really sore aswell today :( Feels like my brain
have bruises or something.
Title: Re: Survey - At what Kip Level can you lay down
Post by nani on Apr 23rd, 2007, 12:39am
I can sleep with an easy shadow. I can lay down (but not really still) up to a k4 or 5. Beyond that, I rock or pace. Up to about a 9... then I bang my head on the floor or wall, whichever is closer.
Title: Re: Survey - At what Kip Level can you lay down
Post by LeLimey on Apr 23rd, 2007, 4:24am
I can't sleep with any twinges at all although whether that's dread or what I wouldn't like to say.

Seems strange in one way when I can wake to much stronger (CH) pain which is what makes me think there is that element of fear in there as I've managed to go to sleep with other quite severe pain (not CH) from my other conditions.

I can't "lie down". I can't walk or pace either as my mobility isn't good enough but I rock or kneel grinding my face into furniture - I have to move no matter how restricted my ability to move. The worst hits I've had weren't THAT bad but they were when I was connected up to drips in hospital and couldn't do what I needed to do and the agitation it caused me made my coping almost non existant.
Title: Re: Survey - At what Kip Level can you lay down
Post by seasonalboomer on Apr 23rd, 2007, 7:38am
While I may sometimes go to prone position, I'd say it would be stretch to call it "laying down". Writhing maybe.

I've woken up on the floor after apparently finally finding a prone position that worked in the wake of a bad one.

Scott
Title: Re: Survey - At what Kip Level can you lay down
Post by Redd on Apr 23rd, 2007, 9:10am
Sleep?  Not even...But I can (for lack of an appropriate term) lay down up until about a K4.  More like toss and turn and grind the left side of my head and face into the pillow.  After that it's ice and my rocking chair.  From 6-7 I'm pacing room to room, 8+ and it's various stages of headbanging on the walls, floor, kitchen cupboards, wherever I happen to have ended up at.

Ahhh the wonderous variety of the levels of pain and what we do to cope.
Title: Re: Survey - At what Kip Level can you lay down
Post by chrisw on Apr 23rd, 2007, 9:21am
Back during my first few years with CH, I would wake up with pain, and apply some heat to the area, then I would be able to lay down with a pillow over my head and do controlled breathing,  always in through the mouth, out through the nose,  very slowly.  This would for some reason,  help me relax and go back to sleep.  I now know that these were very very low level clusters.  Maybe never escalating above a kip 3-4, and short lived.  over the years they escalated by leaps and bounds, until now,  they pull me out of sleep before they even really start to hurt, its just a warning type of burning feeling, and there is no laying down until it has run its course.  It is even very hard to sit still while breathing the O2.  

Finally, its time to pass out from exaustion, and be ready to do it all over again in an hour or so.

God I miss the old days,   I didnt know then how easy I had it.

chrisw
Title: Re: Survey - At what Kip Level can you lay down
Post by swimchica623 on Apr 23rd, 2007, 12:10pm
I can't really sleep or lie down at any level.  I will get some mild shadows...1s or 2s, that if I am absolutely exhuasted I will only have wake up, prop myself up on my elbow, and be able to be pretty still and rub my eye, but during times that I've had more sufficient sleep that will make my wide awake.  The only other time I'm not wide awake is also when I've been very sleep deprived (I love my sleep!) and a hit will be ramping up..during those first 5 minutes or so.  My mom sleeps in the same room as me when I'm gettin slammed because I actually hate being alone, it makes me so scared, so she will say that during that period I will start whimpering or crying in my sleep and my eye will start drooping and watering then..but I'll stay haning onto sleep a few seconds longer...like I don't want to come out of it.  I'm a pretty deep sleeper though.  During these times I've actually had people (sometimes from the board!) in my dreeam telling me to wake up and to go to my oxygen tank and I'll tell them no, I want to keep sleeping, in my dream I think it won't hurt so much if I stay asleep....I only sleep through the very first minute though, just as its starting, and only when I'm exhuasted beyond exhuasted.  

Yeah but besides those weird incidences....no lying down, no sleeping.  And to sum up the weird times...clearly its not undisturbed sleep!!

Lisa
Title: Re: Survey - At what Kip Level can you lay down
Post by JohnC on Apr 23rd, 2007, 12:48pm
Sleep I don't even know how to anymore,I get slammed almost immediately I sleep in 10,20,if I'm lucky 30 minute cycles,I to could pass out after a bad ch but I get scared and although exhausted I will fight to stay awake.I get to where I don't sleep for two,three days and I start thiking crazy.I have even heard voices and shit because I'l be so punchy,it really sucks to be us
Title: Re: Survey - At what Kip Level can you lay down
Post by Melissa on Apr 23rd, 2007, 3:26pm
zero
Title: Re: Survey - At what Kip Level can you lay down
Post by aubmari on Apr 24th, 2007, 6:55pm
No way can I sleep during an attack. The way it works for me is in the true sense of "clusters" I have an episode of 5-6 short hits (15-30 minutes) over a period of 3-4 hours usually 1030pm-300am

I just basically sit and wait until I know that they are over. Usually bye waiting 30-60 minutes of pain free time and then it is safe to go back to sleep most times.

When I had my first episode I honestly thought that me laying down was causing them so I was sceeeerrred to death to lay down.  

I also think that I am WAY too anxious [smiley=bomb.gif] to fall asleep if I could.

Great question though.

Aubmari
Title: Re: Survey - At what Kip Level can you lay down
Post by alienspacebabe on Apr 24th, 2007, 8:18pm
Can't sleep. But can possibly lay down during a mild shadow.
Title: Re: Survey - At what Kip Level can you lay down
Post by TonyG1 on Apr 24th, 2007, 8:23pm
No sleep at the slightest twinge; I'm ALWAYS a night hit person (very rare for a daytime hit) -- keeping my fingers crossed.  I have gotten better as the years have passed at waking during the first signs of an oncoming hit..... go thru my rituals (guzzling as much caffeine as possible in as shortest amount of time possible and wait to see if I'm gonna have to break into the triptans).  As you all know timing is critical to head the beast off before it has a chance to escalate to an 'unmanagable' level.  I have had them where they spontaneously abort after about 15 minutes and then I go back to dream land and wake with a MUCH more ramped up version ... I HATE those as they are hard to abort....  Last time it happened it was a four hour ordeal in the lowest pit of hell.  Generally try not to go back to sleep for that reason ....
Title: Re: Survey - At what Kip Level can you lay down
Post by tommyD on Apr 25th, 2007, 6:57am
I can sleep, if I’m really tired, with up to a KIP 3. Beyond that, forget it.
And once it goes beyond 3 there is no lying down.

I should qualify that - I cannot lay my head back in any kind of face-up position. In fact, just tilting my head back the slightest from straight-up vertical is a bad idea. I can tilt my head forwad, however (otherwise, how could I pound my forehead on the rug?) and have found myself in a kind of prone-fetal position on the floor. This often happens in some hits where I get a wave of weakness in my legs - a feeling like my knees are suddenly too tired to stand or pace. Next thing I know, I’m on hands and knees with my head hanging down.

My hits are usually in the daytime - late afternoon or early evening. I’ve had REM sleep wake-up hits, but only rarely, and none in the past few years.. And with using the shroom and  seed treatments, hits are rare and mild.

-tommyD
Title: Re: Survey - At what Kip Level can you lay down
Post by Rosybabe on Apr 25th, 2007, 4:20pm
I am a night hitter , so I am always sleeping when the beast comes and then of course I can't sleep no matter how small, I go to the bathroom and stay there doing my dancing, medicating, breathing until it goes away and then I lay down to rest, sometimes I will drift to sleep others I just close my eyes and rest hoping another one will not come...then after several days of night hitters I just can't sleep at all, I get friking insomnia! I am  very afraid of going to sleep!..

Oh I am so glad my cycle is over!..I am now sleeping mostly through the night, things are getting better  for me again...until next year...
Title: Re: Survey - At what Kip Level can you lay down
Post by Maffumatt on Apr 25th, 2007, 5:18pm
A 4 will wake me up, but I don't have to get up. A 5 will get me on the o2 tank.
Title: Re: Survey - At what Kip Level can you lay down
Post by Gator on Apr 25th, 2007, 11:59pm
I hardly ever "lay down" in the traditional sense.  I sleep propped up on pillows in a reclined sitting position in the bed or in a recliner.  

For me there is no sleeping with even the slightest twinge.  I guess I'm afraid if I try to sleep, the bastard will ramp up on me.  When I get the rude awakening, I get up and go into another room so I don't disturb the wife and I don't go back to bed until the hit is over.
Title: Re: Survey - At what Kip Level can you lay down
Post by BobG on Apr 26th, 2007, 12:49pm
The pain of a cluster attack is so recognizable, so unlike any other type of pain, so unique that at the first sign I would never even think of laying down, let alone trying to sleep. My best defense is to be sitting up straight or standing.
And, like Gator, I have spent many, many nights sleeping in the recliner with my head well elevated.
Title: Re: Survey - At what Kip Level can you lay down
Post by SchwarzenSchafe on Apr 27th, 2007, 4:12am
Maybe kip1 I could sleep. I've always laid down with ice, always thought they were "migraines" and that's just what people did with migraines. So even some bad ones I'll take lying down, not still though. For the nasty ones I'm moving around a lot. For the really bad ones it's more stumbling/crawling, I have to move but I can't see too well or concentrate on walking, lying down for more than about 10 seconds is pretty hard.
Title: Re: Survey - At what Kip Level can you lay down
Post by GrandPotentate on Apr 28th, 2007, 11:19pm
Lie down?  Hell, I can't even sit for anything greater than a 2 or 3.  The worst has to be when I'm stuck in a car.  This was one of many things that didn't "fit" when my first dr was thinking migranes.  I'm generally exhausted and crash near the end of a evening or night headache.  Daytime ones I often pass a little gas when done and feel remarkably refreshed.  Odd, no?


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