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Jeepgun
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Living With The Beast III - Sleep Cycles
« on: Feb 14th, 2005, 9:16pm »
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By far, the most horrible part of living with CH, is the fact that we get waylaid in our sleep. Even to the point of developing a very real phobia of sleep, which then deprives our bodies of the deep, recuperative rest and REM cycles that are so necessary to the balance and good health of the human body and psyche.
 
Experiments have been done in sleep labs, where people were allowed to experience normal sleep, with the exception of REM. The minute the subject showed evidence of entering into REM sleep, they were awakened. After two weeks, most of the subjects began to show evidence of psychosis similar to that experienced by battle-fatigued combat troops.
 
The human sleep cycle is 90 minutes, which is why it is most beneficial, for an afternoon nap, to lie down for either 30 minutes and nap lightly, or else to take a 90-minute nap. Awakening after only one hour of sleep interrupts the cycle, and consequently, one awakens feeling groggy and lethargic, rather than rested and refreshed.
 
When we are awake and functioning in our everyday lives, we are functioning at a brainwave level called Beta. This is seen on an EEG monitor as a jagged, spiky, "busy" line, with the peaks and valleys being quite close together.
 
When we lie down to sleep and begin to relax, (or when we are entranced by a piece of music, or entering a contemplative state, or experiencing hypnosis), we enter the realm of Alpha. This is seen as a less "busy" line on the EEG monitor, and the peaks and valleys more spread out, with a reduced amplitude in the size of the waves themselves. In deeper Alpha states, we are still aware, but perhaps a little groggy. In this state, if someone asks us whether we are asleep or not, we are likely to reply, "Yes."  
 
 
We pass briefly into a state of Alpha/Theta wave activity which is most commonly seen in deep states of meditation and contemplation.
 
From here, we pass into the familiar zone of REM sleep. The brain goes through its "sorting and filing" of daily events, toys with our fears and insecurities, and even gives most likely outcomes of situations and problems that we are wrestling with. As everyone knows, this is where dreaming takes place.
 
From there, we arrive at the deep, recuperative phase known as Delta. This is where the body is running at a minimum of pulse, respiration, and circulation, but busy making repairs to our various tissues.
 
From Delta, we begin to rise back through the levels again, going back through Alpha/Theta, then through another period of REM, and then back to the Alpha state again, before another 90-minute cycle begins all over again.
 
In my own personal observations in my last cycle, I would go to bed at 11:00 p.m., and awaken at exactly 12:32 a.m. with a cluster headache. I didn't keep track of the other hits that I got during the night, but that one really stands out in my memory, because while in cycle, it happened nearly every single night, at EXACTLY the same time! Invariably, the time noted on the digital clock beside my bed, would be 12:32, :33, or :34.
 
Perhaps, in keeping more accurate and conscientious journals, noting the times that we get hit at night, we can begin to "time" our hits. Perhaps even setting a kitchen timer to awaken us every 75 minutes, just before we hit Alpha, to "catch" the very beginning of an attack so that it may be more effectively prevented/aborted with oxygen.
 
I haven't attempted this, but hopefully, it will be useful to someone who wishes to experiment, and hopefully, it will bring greater opportunities for better, deeper, and more recuperative rest, so that the fear can be eliminated, and the depression and exhaustion may be minimized.
 
PFDAN's,
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Re: Living With The Beast III - Sleep Cycles
« Reply #1 on: Feb 14th, 2005, 9:27pm »
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on Feb 14th, 2005, 9:16pm, Frank_W wrote:
Perhaps, in keeping more accurate and conscientious journals, noting the times that we get hit at night, we can begin to "time" our hits. Perhaps even setting a kitchen timer to awaken us every 75 minutes, just before we hit Alpha, to "catch" the very beginning of an attack so that it may be more effectively prevented/aborted with oxygen.

 
I'll give it a try, nothing to lose except some pain. Nice thread Frank.
 
Sean.............................
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Re: Living With The Beast III - Sleep Cycles
« Reply #2 on: Feb 14th, 2005, 9:49pm »
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Hypersomnia....what do you do then?
 
Just curious
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Re: Living With The Beast III - Sleep Cycles
« Reply #3 on: Feb 14th, 2005, 9:54pm »
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Thanks, Sean.
 
Hypersomnia? I don't think I've heard that term before. Do you mean something similar to narcolepsy? Or are you talking about wanting to do nothing but sleep? If it's the latter, it may be a symptom of exhaustion and/or depression. In any case, especially if one is chronic, or an episodic in cycle, my personal feeling is that whatever rest and sleep you are able to get, GO FOR IT!
 
Depression, chronic fatigue syndrome, and things of a similar nature should be ruled out, though. If you feel it is a problem, then it is something to bring up with your family practitioner or neurologist.
 
PFDAN's,
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Re: Living With The Beast III - Sleep Cycles
« Reply #4 on: Feb 14th, 2005, 9:58pm »
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Quote:
Do you mean something similar to narcolepsy?

 
Exactly, neuro diagnosed me with it, gave me dextroamphetamines to treat it. have to take one every morning. SUX! but it keeps me alert during the day.
 
 
Ramon
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Re: Living With The Beast III - Sleep Cycles
« Reply #5 on: Feb 14th, 2005, 10:01pm »
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If you do a Google search for narcolepsy, there are some really good, informative resources on the net. Very best wishes to you, Ramon. Hang in there, my friend.
 
-Frank
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Re: Living With The Beast III - Sleep Cycles
« Reply #6 on: Feb 14th, 2005, 10:06pm »
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good post Frank my friend  Smiley
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Re: Living With The Beast III - Sleep Cycles
« Reply #7 on: Feb 14th, 2005, 10:35pm »
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Interesting thread Frank and it mirrors my last few cycles to a T. Since I have been out of cycle for 4 years now, it is very interesting to me that I STILL awake exactly 90 minutes after I go to sleep, minus the headache. I don't recall this happening when I was younger
  Now I just get up and go to the bathroom. Undecided
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Re: Living With The Beast III - Sleep Cycles
« Reply #8 on: Feb 14th, 2005, 10:54pm »
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I keeping this one Frank.
 
I recall my last cycle when I was given a large design project in the third month of a six month cycle.  I failed big time.  Could not even think.
 
Between the dope and many night hits, I felt like I was just painfully alive.  I just stared at the blank paper only able to realize I was loosing a great oppertunity and unable to muster any vestages of reliable talent.
 
Good thing the project was put on hold, cause now I'm back on it and cranking like a mofo.
 
I hate the nights when in cycle.  What a thief these things are.  
 
Thanks.
Steve G
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Re: Living With The Beast III - Sleep Cycles
« Reply #9 on: Feb 15th, 2005, 8:23am »
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Great info Frank...Thanks!
 
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Re: Living With The Beast III - Sleep Cycles
« Reply #10 on: Feb 15th, 2005, 1:44pm »
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Thank you, Frank.
 
This is all good info...some  I knew at one point(sleep study), but had forgotten. I'd be real curious to see what would happen if I kept track of my waking up times.
 
The sleep study said I was an example of an excellent sleep pattern. ME? Clearly, they were looking at the wrong chart.lol
 
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Re: Living With The Beast III - Sleep Cycles
« Reply #11 on: Feb 15th, 2005, 1:47pm »
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Thanks... I just hope something here can help people. For every bit of control we seize back from the beast, the better off we are. Until the day that there is a cure, I'm going to keep seeking out new ways to be proactive in the fight.
 
My very best to you all.
 
PFDAN's,
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Re: Living With The Beast III - Sleep Cycles
« Reply #12 on: Feb 15th, 2005, 2:02pm »
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It is funny one doc told me that Cluster sufferers only get one hit at night and it is 3 hours after going to bed.  The fact that I would go to bed at 10:30 and be up at midnight. Fight and then crash again and be up at 3am, he said it could not be clusters.  Wish I knew what fucking book he was reading. but it really messed with me as I was just starting this fight.  Now I undersatnd more and can tell them that they need to rea up and study more. That they cant just assume that it is not clusters because they dont know how to treat them.  
 
As far as sleep goes, I can get really worked up when I have ramped up to 8-9 a day.  So the doc gave me valium to take to help relax me some because without at least a little good sleep I am fucked and not safe, as I spend at least half my day at work in the car. Think that might have been lead to my accident last March cause I had ramped and was so tired I could not sleep. Does that make any sense?  I could fall alseep in the middle of a conversation at my desk, but at night no fucking way.  
 
A little worried cause I know that I am ready for a ramp up right now. And an scared to even see a new doc. But I have no choice.  Need to get in before my supply of trex runs out.   Undecided  Cry
 
-Tia
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Re: Living With The Beast III - Sleep Cycles
« Reply #13 on: Feb 15th, 2005, 4:58pm »
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Tiannia, what finally helped me, was to print off the OUCH handout for physicians. I went through it and highlighted my specific symptoms, and treatment options specifically regarding cluster headaches. If you are going to see a new physician, you may want to do this. Most doctors, when confronted by a patient who has done their own homework and is a responsible partner in effecting treatment, respond very favorably. Good luck!
 
http://www.clusterheadaches.com/about.html
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Re: Living With The Beast III - Sleep Cycles
« Reply #14 on: Feb 15th, 2005, 5:23pm »
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on Feb 15th, 2005, 4:58pm, Frank_W wrote:
Tiannia, what finally helped me, was to print off the OUCH handout for physicians. I went through it and highlighted my specific symptoms, and treatment options specifically regarding cluster headaches. If you are going to see a new physician, you may want to do this. Most doctors, when confronted by a patient who has done their own homework and is a responsible partner in effecting treatment, respond very favorably. Good luck!
 
http://www.clusterheadaches.com/about.html

 
Done that witht he last 3. one was a neuro.  All three told me that because I am a woman, they really need to factor all other possiblities for Headaches first becuase there is no way that I can assume that I have Clusters. "Women just don;t get those that often."  
 
I am sorry hun, but there is a definate bias in the medical community because of lack of information and knowledge that women can not have clusters.  The Neuro after 3 months finally said that he thought I might actually be having clusters but he thought that another HA was triggering "some" of my clusters. But he could not figure out what the "other" headache was.  It is bull shit.  Angry
 
But yes, I will go with everything in hand to my new one like always and hope for the best.  
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Re: Living With The Beast III - Sleep Cycles
« Reply #15 on: Feb 15th, 2005, 5:28pm »
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Well, all you can do is keep trying. I certainly have no great faith in medical professionals, but eventually, you may come across one that really DOES want to help. Would it be best if you could find a female neuro or general practitioner?
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Re: Living With The Beast III - Sleep Cycles
« Reply #16 on: Feb 15th, 2005, 5:39pm »
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on Feb 15th, 2005, 5:28pm, Frank_W wrote:
Would it be best if you could find a female neuro or general practitioner?

 
That is what I am hoping for this time.  With the HMO that I had before that was not even possible cause they sent you where they wanted.  but I am looking into a female now. I have been putting it off  but I need to do it before they get bad.  
 
Thanks hun, I am sorry that you are in pain.  I still dont think I could deal with being Episodic.  I wouldnot want the fear of not knowing when they are going to come back.  Not that I am all that thrilled with having them chronic but at least I KNOW that he is always here and I am braced for it.
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Re: Living With The Beast III - Sleep Cycles
« Reply #17 on: Feb 15th, 2005, 5:43pm »
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Again, good luck, Tiannia. Actually, I'm not in any pain, except for the damn flu that hit me like a ton of bricks, today. For whatever reason, I haven't gone into cycle this year, and now I'm wondering when it's going to come... It's like living with an anvil hanging overhead... For now, each day that I am pain-free, I am grateful. I hope you get some relief, and I hope you find a neurologist or a general practitioner who is willing to listen and help you.
 
-Frank
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Re: Living With The Beast III - Sleep Cycles
« Reply #18 on: Mar 4th, 2005, 3:11pm »
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Reviving this thread to ask if anyone has attempted setting a kitchen timer, to awaken just prior to being waylaid by the beast at night? If so, please share your results. Thus far, in my current cycle, I've only been hit once, and the rest have been shadows... Nothing like the clockwork precision of my last cycle. Again, if you have experimented with this technique, please share your results. Thank you.
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