Hi; I have a question:

Is it true that 45% of people with cluster die in thier sleep & that this is linked to sleep apnea? If there are any links or anything; please post regarding. Thanks...

Izzy,

Can you post a link to where you read this?  I have never heard of this.

Izzy wrote on Oct 9^th, 2008 at 2:36pm:

Hi; I have a question: Is it true that 45% of people with cluster die in thier sleep & that this is linked to sleep apnea? If there are any links or anything; please post regarding. Thanks...

 Yer shittin me..................right?

            Potter

Holy Crap !!!!!!!
Just when ya think ya got a  handle on things !!

I have seen statistics that 50% to 80% of clusterheads have sleep apnea. I have not seen any numbers on how many have heart attacks in their sleep from the apnea.  Even if a person doesn't die immediately in their sleep, apnea can weaken the heart and make a person susceptible to heart problems.  

if its true, that is good news!!!

Hey guys;

Sorry if I caused a freak. I just finished calling the person who emailed me that because quite frankly I was like "WHAT???". They got an ear full when I went to the link (which they didn't post in the email, they gave over the phone). They totally misread it & made thier own conclusion; because I couldn't find that stat anywhere. I should have fleshed it before I posted but I have so much going on right now! To be clear: THE STAT IS FALSE; as far as I can find. The links are here & say nothing other than sleep apnea occurs in some people with CH. I hope this clears up? Sorry again.

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Quote:

Headache. 2004 Jun;44(6):607-10.    Obstructive sleep apnea and cluster headache.    Graff-Radford SB, Newman A.    The Pain Center, Cedars Sinai Medical Center and UCLA School of Dentistry, Los Angeles, CA 90048, USA.    A patient with cluster headache often wakes from sleep. The relationship to sleep apnea has been described. This study sought to confirm the relationship cluster may have with sleep apnea. METHODS: Thirty-nine consecutive patients diagnosed with episodic cluster headache according to the International Headache Society (IHS) criteria were sent for polysomnographic studies. All patients were in an active phase when they were in the study. Patients were told of the proposed relationship and were allowed to choose a sleep laboratory close to their home. RESULTS: Thirty-one patients with episodic cluster headache completed an overnight polysomnographic study. Twenty-three were male and eight female. The average age was 51 years (range 33 to 78 years). The average weight was 173 pounds (range 117 to 260 pounds). A total of 80.64% had sleep apnea (25/31). Average respiratory depression index (RDI) was 19.0 (SD 14.6) with 6 patients having no apnea, 10 having mild, 11 having moderate, and 4 having severe apnea (RDI < 5 = none; RDI 5 to 20 mild; RDI 20 to 40 moderate; RDI > 40 severe). Oxygen saturation decreased on average to 88.4% SD 4.5. Sleep efficiency was 76.2% (SD 13.4). CONCLUSIONS: The data closely approximate those of Chervin et al, where 80% had RDI > 5. The relationship sleep apnea has in the perpetuation or precipitation of cluster headache is still to be determined. There are some reports that treatment stops the cluster but there is no prospective study. The high incidence (80.64%) seen in this population suggests the cluster patient should receive a sleep evaluation and perhaps intervention with continuous positive airway pressure (CPAP) or an appropriate dental device.

Worth getting a sleep study, IMO.

monty wrote on Oct 9^th, 2008 at 3:58pm:

[quote] Worth getting a sleep study, IMO.

It totally is worth! Um..what's Imo? Thanks.

It's no wonder we don't want to sleep...

I completely agree with you. It sucks. I hate sleeping & I don't even have it! I just know he's going to wake up crying. And we already go to sleep crying. BLARGH!!!

Izzy wrote on Oct 9^th, 2008 at 4:01pm:

monty wrote on Oct 9th, 2008 at 3:58pm: [quote] Worth getting a sleep study, IMO. It totally is worth! Um..what's Imo? Thanks.

In My Opinion...

IMHO....  In My Humble Opinion...

Jeannie wrote on Oct 9^th, 2008 at 4:13pm:

Izzy wrote on Oct 9th, 2008 at 4:01pm: [quote author=292B2A303D440 link=1223577408/0#7 date=1223582291][quote] It totally is worth! Um..what's Imo? Thanks. In My Opinion... IMHO....  In My Humble Opinion...

Thanks!

I was so lookin forward to dying in my sleep.

        Potter

Hi, Kit here (wife/ supporter of Chris) -
Chris had sleep apnea but this year has lost 50lbs (go weight watchers) and has since had no signs of apnea (snoring, waking up because he can't breathe, etc...) and then CH appeared. Coincidence? Who knows. It really sucks that he has lost all this weight and still gets hit with something as nasty as CH... isn't weight loss supposed to make you healthier? Well, now he has quit drinking (at least during the cycle) and smoking is the next thing to go. The link you posted mentioned that many sufferers of CH abuse alcohol...from eeverything I had read before that is the first time I heard that. Is that a common thread? Let's use the term "abuse" loosely, Chris is NOT an alcoholic but he does like his beer...just curious.

Kit wrote on Oct 9^th, 2008 at 5:54pm:

. The link you posted mentioned that many sufferers of CH abuse alcohol...from eeverything I had read before that is the first time I heard that. Is that a common thread? Let's use the term "abuse" loosely, .

Lots of links say common thread is heavy drinkers, heavy smokers, very rare in females and that we all have lion shaped faces.   I rarely drink,  not a heavy smoker,  I am a female  and I don't have a lion shaped face.  What seems to be the case is that for every similarity in CH you will find many differences too.    :-/

What we all do have in common is a screwed up hypothalmus.  

Got it - I think that's what I am figuring out  :(

mezza wrote on Oct 9^th, 2008 at 9:55pm:

Kit wrote on Oct 9th, 2008 at 5:54pm: . The link you posted mentioned that many sufferers of CH abuse alcohol...from eeverything I had read before that is the first time I heard that. Is that a common thread? Let's use the term "abuse" loosely, . Lots of links say common thread is heavy drinkers, heavy smokers, very rare in females and that we all have lion shaped faces.   I rarely drink,  not a heavy smoker,  I am a female  and I don't have a lion shaped face.  What seems to be the case is that for every similarity in CH you will find many differences too.    :-/ What we all do have in common is a screwed up hypothalmus.

Lion shaped face? I've never heard that term, could you explain please? :3

mezza wrote on Oct 9^th, 2008 at 9:55pm:

Lots of links say common thread is heavy drinkers, heavy smokers, very rare in females and that we all have lion shaped faces...

Don't forget that we'll all supposed to be tall, too!  :-?

Regards,
Jim  (6'3")

I believe it was a chap called Dr Graham who first suggested the "leonine facial appearance" in CH in the late 1960s, amongst many other weird observations.  I also believe that this has subsequently been labelled a myth; see:


Quote:

Journal Current Pain and Headache Reports Publisher Current Medicine Group LLC ISSN 1531-3433 (Print) 1534-3081 (Online) Issue Volume 10, Number 2 / April, 2006 DOI 10.1007/s11916-006-0025-z Pages 137-141 Cluster headache: Myths and the evidence Herbert G. Markley1  and Dawn C. Buse1 (1)  New England Regional Headache Center, Inc., 85 Prescott Street, 01605 Worcester, MA, USA Abstract  Although cluster headache (CH) has been the focus of a great deal of research, it also has been the focus of a great deal of speculations that have been repeated commonly as fact. The authors conducted a thorough review of the literature and an informal poll of several noted headache experts to investigate the truth behind common myths and hypotheses regarding CH. They then present an overview of some of these more common hypotheses, observations, and myths, and offer a brief review of the existing evidence supporting or negating the theories. These include gender, genetics, suicidality, homicidality, physical appearance, personality, and psychologic features of the patient with CH.

-Lee

I have more of a paramecium-shaped face.

Kit wrote on Oct 9^th, 2008 at 5:54pm:

The link you posted mentioned that many sufferers of CH abuse alcohol...from eeverything I had read before that is the first time I heard that. Is that a common thread? Let's use the term "abuse" loosely, Chris is NOT an alcoholic but he does like his beer...just curious.

I know I read that & thought it was strange that they would use such a strong word! Sorry if it offended; but just so you know I don't use that word. Just because people drink doesn't mean AT ALL that they "abuse." I hate that word. I'm a social drinker...I just like my vodka. My husband doesn't drink at all but that's because it makes him sick, not because he doesn't enjoy it. So to answer your question; NO it's not a common thread. I think some people misunderstand a trigger as something we overuse  & therefore they use that word but it's not...it's just something that could possibly cause a hit is all.

Bless;
Iz

Kilowatt3 wrote on Oct 10^th, 2008 at 9:45am:

mezza wrote on Oct 9th, 2008 at 9:55pm: Lots of links say common thread is heavy drinkers, heavy smokers, very rare in females and that we all have lion shaped faces... Don't forget that we'll all supposed to be tall, too!  :-? Regards, Jim  (6'3")

My face is heart shaped and I'm 5'7" XD I still have no idea what a lion shaped face would look like, though...

My face is shaped like an ass.

This shit must be all in my head. Which is also my ass. Which is also my face.

Pixie-elf wrote on Oct 10^th, 2008 at 9:50pm:

[quote author=002227243C2A3F3F784B0 link=1223577408/0#18 date=1223646353][quote author=49415E5E45240 link=1223577408/0#15 date=1223603722] I still have no idea what a lion shaped face would look like, though...

Jon & I can't figure it out either...but at any rate it would be interesting. He has a Roman-esque face. I don't think faces have anything to with it; there are so many things that vary from person to person it seems...but I enjoy the laugh I get trying to picture a lion face. All I can think of is Beauty & The Beast...which makes us laugh MORE. (If anyone has ever seen the TV special that was on a few years ago with real actors?)

Izzy: Searching I only found this...

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Click on the picture.  XD I giggled, when it's mouth is closed it looks constipated.


wrote on Oct 10^th, 2008 at 9:53pm:

My face is shaped like an ass. This shit must be all in my head. Which is also my ass. Which is also my face.

So....is there a pain in your ass?

*lol* That was awesome! Oh I found that show! It's on Tv.com; I posted the link. Scroll down & click on the photo of the chick with the lion shaped face guy.

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[quote author=2A19191A630 link=1223577408/25#26 date=1223690703]*lol* That was awesome! Oh I found that show! It's on Tv.com; I posted the link. Scroll down & click on the photo of the chick with the lion shaped face guy.

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Now I'm just thinking of the guy who got all of those tattoo's and body mod's to be a big cat...

Somebody did that? Huh. One of my friends got his tongue split like a lizard once but never heard of a real cat man. That's kind of cool...

Quote:

So....is there a pain in your ass?

Only when I blow my nose.

At least, I THINK that's my nose.

Ow, Brew, just ow. D:


Izzy wrote on Oct 10^th, 2008 at 10:25pm:

Somebody did that? Huh. One of my friends got his tongue split like a lizard once but never heard of a real cat man. That's kind of cool...

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Yup, there's a picture of him.

Like a drink (beer) smoke too much, 6'5" tall 105kgs (dont know lbs in aust)

Fairly fit for 46y (still waterski, race stock cars, motocycles etc)

thin faced with thick grey hair.
blue eyes

wayne

like this......

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;)

kelly

no really... probably something like the lion in wizard of oz...

mezza wrote on Oct 12^th, 2008 at 11:45pm:

like this...... http://adsoftheworld.com/files/images/Lion.preview.jpg ;) kelly no really... probably something like the lion in wizard of oz...

I only have one picture to reply with on that.

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Not getting off topic isn't fun, (I plan on doing it here in a second), I just pulled out my Polosomnography (sleep study) report from last November and my AHI index was 101.9 (very severe). O₂ level dropped to 26% within 2 hours. In that 2 hours I stopped breathing 174 times.  :'( . Is it realated to my CH? I can't say, I went in for the study for my snoring.

Now my off topic comment  :D. The dragon pic posted earler is what I envision the demon in my head looks like as its hitting me.

   Well I rarely drink. No one has ever said I have a lion shaped face. I'm only 6 Ft. and 200 Lbs. I used to smoke a pack of cigarettes a day, If that means anything. But I've never had sleep Apnea. Although I have had three open heart surgeries.
   As far as I can tell, none of this relates to CH on any statistical chart that I've ever seen.
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erickthered wrote on Oct 13^th, 2008 at 3:43pm:

Not getting off topic isn't fun, (I plan on doing it here in a second), I just pulled out my Polosomnography (sleep study) report from last November and my AHI index was 101.9 (very severe). O2 level dropped to 26% within 2 hours. In that 2 hours I stopped breathing 174 times.  :'( . Is it realated to my CH? I can't say, I went in for the study for my snoring. Now my off topic comment  :D. The dragon pic posted earler is what I envision the demon in my head looks like as its hitting me.

There are a lot of threads on sleep apnea and CH, a lot of people with CH have sleep apnea (I have central) so they sleep with either a CPAP or a BiPAP machine at night. They get better rest they say, but it doesn't help with the beast from what I've read...