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Topic: Sleep Apnea & CH (Read 207 times) |
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Gator
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Sleep Apnea & CH
« on: Aug 6th, 2004, 9:27am » |
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Hey everyone. I need to pick your brains.
I get hit 3 to 5 times (or more) a day - during the day and at night. My neuro has given up on any preventative meds working for me and now wants to do a sleep study to see if I have sleep apnea. He seems to think that maybe treating the apnea, if it exists, will also treat the CH.
I'm skeptical of everything at this point so before spending money I really can't afford for a test and treatment that may or may not work, I thought I'd ask those of you who have been there done that.
In your experience: will treating sleep apnea help with the night attacks and even if it does, will that do anything for the daytime attacks?
Gator
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Kevin_M
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Re: Sleep Apnea & CH
« Reply #1 on: Aug 6th, 2004, 9:44am » |
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The "giving up on the preventative" thing may not be to your advantage Gator. That, I am familiar with and it got to be a rougher and rougher ride over eight years with many ineffective ones. Different doc helped with that.
Floridian put up lots of info on sleep apnea and clusters a while back, you probably read it. Can't say about that. Vibes to you Gator.
Kevin M
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Lobster
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Re: Sleep Apnea & CH
« Reply #2 on: Aug 6th, 2004, 9:49am » |
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The connection sounds logical.
I snore like a biatch, and am told that I will stop breathing for short periods... thus I likely to have apnea to a degree.
Since o2 can abort, it is logical that lack of o2 (apnea) could trigger.
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Killroy 2.0
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Re: Sleep Apnea & CH
« Reply #3 on: Aug 6th, 2004, 10:32am » |
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I have sleep apnea and wear a cpap machine at night - It has cut down on the night time Ch's but did not help the day ones
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UN_SOLVED
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Re: Sleep Apnea & CH
« Reply #4 on: Aug 6th, 2004, 10:58am » |
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I also did the sleep study. My neuro says that something like 80% of clusterheads have sleep apnea. We did try to treat the sleep apnea with 2 differeent kinds of machines (one was a CPAP).
It didn't help my attacks any and was a biotch to get off during the night (so I could get to the Imitrex).
Just my personal OPINION : If you were to have moderate to severe apnea, the CPAP may cut down on night time attacks.
Unsolved
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Jeepgun
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My wife says I go for long periods where I breathe only once per minute, and then once every two or three minutes. It scares the crap out of her. I just told her that I'm "out and about."  When I'm in cycle, I usually only get hit twice a night, and I can't stand the thought of wearing some contraption on my face while trying to sleep, so I'll just slug it out, I guess. As for the connection between sleep apnea and CH, I think it has more to do with sleep cycles and REM phases, and the way neurons and brainwaves are being activated in the brain. Just my own theory... FWIW....
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E-Double
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Re: Sleep Apnea & CH
« Reply #6 on: Aug 6th, 2004, 4:14pm » |
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on Aug 6th, 2004, 4:01pm, Jeepgun wrote:| My wife says I go for long periods where I breathe only once per minute, and then once every two or three minutes. It scares the crap out of her. I just told her that I'm "out and about." When I'm in cycle, I usually only get hit twice a night, and I can't stand the thought of wearing some contraption on my face while trying to sleep, so I'll just slug it out, I guess. As for the connection between sleep apnea and CH, I think it has more to do with sleep cycles and REM phases, and the way neurons and brainwaves are being activated in the brain. Just my own theory... FWIW.... |
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Same here..
Went for the study and the contraption was too much for me to tolerate so I just deal with the apnea and she deals with the snoring 
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Jeepgun
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The thing is, I don't snore, but check it out: A normal sleep cycle is ninety minutes: Descent from Beta waves to alpha or alpha/theta, then a period of REM, then into Delta. Delta wave sleep is the deepest, most recuperative phase of sleep that allows our bodies to repair themselves and the brain to "reset" itself. Then it's back up to REM, then Alpha, and if uninterrupted, the cycle begins all over again. I go to sleep most nights, around 11:00 p.m. It never fails: When in cycle, I awaken with a cluster headache every single night, at exactly 12:32 a.m. It's uncanny....
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sturgida
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Re: Sleep Apnea & CH
« Reply #8 on: Aug 6th, 2004, 4:19pm » |
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I wake up several times a night (even when not in cycle) but it never dawned on me that I may have apnea. I'll have to look into it. It would explain my sleeping problems.
sturgida
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floridian
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Usually when people talk about apnea, they mean obstructive sleep apnea. That is related to the physical structure of the airways - deviated septum, clogged sinuses, obesity enlarged glottis and epiglottis (that little thingy that hangs down in the back of your mouth). The machines generally help with obstructive apnea.
Problem is, apnea can also be caused by neurotransmitter imbalance, especially serotonin (this is central apnea, not obstructive apnea). My guess is that most of us have central apnea, and using a cpap machine to keep the airways open may not keep us breathing.
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Re: Sleep Apnea & CH
« Reply #10 on: Aug 7th, 2004, 1:50pm » |
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I've woken-up in the middle of the night (on more occasions than I can count) gasping for air. It scares the hell out of me...so much so that I'm afraid to go back to sleep for fear that I'll stop breathing all together. I never thought it could be connected to CH's in any way, do a lot of people here get apnea?
~Jake
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Cerberus
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Re: Sleep Apnea & CH
« Reply #11 on: Aug 7th, 2004, 1:57pm » |
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I also have heard the 80% CH/apnea thing...
Unfortunately for me I fall into the minority 20% I don't have apnea but I am a hypersomniac. My Neuro is a sleep specialist and I hope to find out more info from her on sleep disorders and CH if she has any info or research. If I find that she has anything significant to offer I may try to arrange something between her and OUCH on speaking for a convention or something...
More on this as it develops...
I agree with the others don't stop your preventatives if you don't have to...no good can come from that, if they work for ya.
RAmon
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synergy2120
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Re: Sleep Apnea & CH
« Reply #12 on: Aug 7th, 2004, 2:33pm » |
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Marc's neuro is set on the idea that getting marc back into a normal sleep pattern will do wonders for the CH. For the last year marc's sleep pattern is the reverse of mine. He goes to bed at 5am and wakes at 2pm the next day (if the beast doesnt wake him first).
Marc has tried to come to bed with me at 10pm and he can fall asleep easily but the beast will wake him at around 1am and stay with him till 5am.
How is it possible to get back into the normal pattern when the beast makes sure that you cant.
Has anyone here suceeded in this?
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Kevin_M
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Re: Sleep Apnea & CH
« Reply #13 on: Aug 7th, 2004, 3:11pm » |
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Truthfully Gator, I have learned now to accept that if I am getting hit while in cycle 3-4 times 24/7, my preventative is working. It is an improvement from the average of 6-7 times from all other previous years' cycles. That's the best I've done on good days. Keep looking and best to ya Gator.
Kevin M
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| « Last Edit: Aug 7th, 2004, 3:22pm by Kevin_M » |
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Gator
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Re: Sleep Apnea & CH
« Reply #14 on: Aug 8th, 2004, 7:20pm » |
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Thanks for the input, everyone. It sounds like I'm gonna be stuck with this regardless of whether I have apnea or not and whether I treat it or not if I have it. Kind of what I figured. Like I said, I was trying to see if spending the money for the test was going to be worth the outlay. I'm kind of like most of you - I don't think I could sleep with anything on my face. More to think about, I guess.
As far as me quitting preventatives that's not the case. I don't have anything to quit, 'cause nothing seems to work.
I read about the obstructive sleep apnea and central sleep apnea. Obstructive apnea can be treated with cpap, dental devices, losing weight or surgery. The only thing that will treat central is cpap. So, far in the reading I've done I have only found 2 cases where treating apnea cured clusters.
Gator
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Opus
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Re: Sleep Apnea & CH
« Reply #15 on: Aug 8th, 2004, 9:47pm » |
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I had untreated sleep apnea for years, I finally found a sleep doc that would even try a CPAP because the real problem is that my throat is too small. A surgeon said that if I get 50% relief from the CPAP it would be better than the 10% odds that the surgery would work. I suffered from extreme joint and bone pain from the apnea plus the constant exhaustion. I also suffered from bouts of head aches that came every too years. At the time they were the worst pain I had ever felt, but they weren't even pacers. When I got the CPAP, my apnea symptoms slowly disappeared but then a few months later I got the headaches back, this time I was pacing. Then I got my first 10, after 2 hours the ambulance was called and they were amazed at how much I calmed down after they gave me an 02 mask. The ER doc diagnosed CH that night, and so far he has been right.
So for me treating my apnea may have made my CH worse, but not living in constant pain is better than suffering from CH. I traded one disabling pain for another but I have made a lot more friends here than the apnea boards.
Opus/Paul
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Redneck/Jimbo
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I was diagnosed with sleep apnea about 12 years ago, cudn't stand the c-pap so quit untill last spring.Started back but can't say if it helped or not. Not quite as tired during the day but thats all I know 
Jimbo
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Donna_D.
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Re: Sleep Apnea & CH
« Reply #17 on: Aug 8th, 2004, 10:24pm » |
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Just went to the doctor last Friday...
...diagnosis...Probably Sleep Apnea...
Further tests ($$$) are required....of course  .
I am interested in seeing if treatment of my "apnea" will help with the CH...
And as far as snoring goes....just ask Jayne about
"the bathtub"
DD
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lionsound
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Re: Sleep Apnea & CH
« Reply #18 on: Aug 8th, 2004, 11:41pm » |
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I had a sleep study done and it showed nothing.......and I always sleep like crap.
I think that the connection with the apnea and clusters might just have to do with the fact that sleep is poor = more CHa's.
The other thing a sleep study might help with is identifying some of the sleep cycle time jeepgun talked about, and if yours are of "regular " lenghts. That's what my neuro was looking for.
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