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Title: Why!!!!?? Always in middle of deep sleep??? Post by shaktima on Dec 27th, 2003, 9:39pm Hello fellow CH sufferers? My question is WHY do these demon clusters have to happen in the middle of a SOUND, DEEP sleep, when all of a sudden, I feel that funny feeling above my upper teeth, in my temporal artery and I say to myself, "No, No, Go AWAY!!!!" (not wanting to get out of my warm, peaceful bed, but knowing that if I do not, and dont get my medication, I am going to be in for a night of wall-banging, suicidal pain!!!! Why do they come every night at exactly 3:12 am??? I literally pound on my head with my fist, using an ice pack, taking my Imitrex or whatever I have handy, but I know if I wait too long, even Imitrex, Zomig or anything else, will take at least 2 hours to work and then I am pacing the floors!!! This disease truly has to be the devil, I can think of no pain I have ever had that equals this! I went over 4 months with no CH's at all, and then all of a sudden, with the holidays, 3:12 am, the devil again comes to visit. How can I convince my family and friends that this is NOT a typical headache, it is more pain than any human being should EVEr have to have. I have often thought of trying to kill myself during one of these attacks, just to get some relief!!!!! I am not on any other medications, as it seems that even when I tried to take Sam-E, a herbal antidepressant, it made them come on even more! ! Is this a curse or what???? Cathy PS: First got first cluster over 7 years ago, and in beginning, I got 3 a week. Now I thought they went away, but they are coming back! I AM SO SCARED!@!!!!! |
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Title: Re: Why!!!!?? Always in middle of deep sleep??? Post by forgetfulnot on Dec 27th, 2003, 9:46pm Quote:
The two best abortives that we know of are O2 and Imitrex injections. Some claim abortive success with magic mushrooms as well. Have you tried any of these? Punch the buttons on the left, there is many years of information at your fingertips. 8) Lee |
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Title: Re: Why!!!!?? Always in middle of deep sleep??? Post by Brian_Y on Dec 27th, 2003, 9:50pm CHs and circadian rhythms are friends. CHs and REM sleep are mortal and dire enemies...I am discovering this out right now. You can set your goddamn watch by mine and almost exclusively when I go to sleep. Fun!!!! |
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Title: Re: Why!!!!?? Always in middle of deep sleep??? Post by shaktima on Dec 27th, 2003, 9:57pm I guess that is right!!!! I need to get a new brain, I guess!!!!! My dad gets migraines, but I do not think they are ANYTHING compared to clusters!!!! Why is the pain so bad??????? I mean, when I am in the middle of one of these, I really just want to die, it is so bad. I dont remember pain this bad even with childbirth!!!! DO THEY EVER GO AWAY? Or am I cursed with it til I die?? I am getting really depressed here! :'( |
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Title: Re: Why!!!!?? Always in middle of deep sleep??? Post by BlueMeanie on Dec 27th, 2003, 11:12pm SHAKTIMA, Welcome to clusterville. Even tough your pain is VERY bad right now. Believe it that there will be some PF times coming your way soon. The Beast seams to get rialed up sometimes and just won't leave you alone for days. It will slack off eventually. If your Episodic, it may leave for a couple of years. You never really know with the Beast. Imitrex injections is the FASTED way to abort. Unfortunately, the prevents are different for everyone. It takes lots of trial and error to find what will work for you. REM sleep is your most vulnerable time. I believe your mind is occupied with thoughts during the REM stage and therefore you don't know the Beast is planning it's nightly visit. Happens to most ALL clusterheads. Sleep meds work good for some people. |
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Title: Re: Why!!!!?? Always in middle of deep sleep??? Post by Unsolved on Dec 27th, 2003, 11:32pm Ahhh...one of the few people who really does sound like they have what I have [ "wall banging, suicidal pain" ] That about sums it up. Sleep...I remember sleep...a long, long time ago I used to sleep. Now I only get it while admitted in the hospital getting DHE or SoluMedrol. I know your frustration all too well. Unsolved |
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Title: Re: Why!!!!?? Always in middle of deep sleep??? Post by TxBasslady on Dec 27th, 2003, 11:41pm Hi Shaktima, Welcome to the board. First off, realize that you are not alone in this. Second, you have to accept the fact that the beast is running this show. It's extremely hard to fool him. My hits came within 30 min to 1 hour after I went to sleep. Even when I stayed up past the time I usually got hit, he came later on. I am also episodic, and a Prednisone taper ended my cycle. Today is 109 days pf. However, the Prednisone doesn't work the same for everyone. For some, when they finish the taper, the beast returns. So far, so good for me though. The Prednisone is cheap compared to the other meds. You might consider asking your doc about giving it a try. So sorry you are having a rough time. We've all been there, and some have always been there. Alot of chronics here on this board. They can give you some really good advice and alot of remedies they have tried. Keep us posted and let us know how you are getting along. Jean |
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Title: Re: Why!!!!?? Always in middle of deep sleep??? Post by Charlie on Dec 28th, 2003, 1:09am You nailed it. We all seem to have or have had the deep sleep thing. My guess is that when we sleep some process in our poorly engineered bodies starts or stops. Perhaps something is released or just catches up with us. Anything to catch us off guard. Here are a couple links for you. The first is to a letter by our very good friend Simon who has done a great job explaining that CH has nothing at all to do with what people.....including relatives, think of as "headache." No relationship whatsoever. Here it is and he suggests copying it. "http://www.ouch-uk.org/ch/note_colleagues.cfm" The following is to a technique that was very helpful to me: http://www.netsync.net/users/charlies/ Hope this helps and let us know how you're doing. Charlie |
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Title: Re: Why!!!!?? Always in middle of deep sleep??? Post by Mac on Dec 28th, 2003, 3:49am Hmmmmmm... Wakes up like clockwork with a suicidal headache. Sounds like one of ours. Welcome to our exclusive club shaktima. I'm one of those "kroniks"you have heard about. My alarm goes off exactly 1 hour after my head hits the pillow.The problem with this particular alarm clock? No snooze button. In fact you can't even turn the fucking thing off. So you learn to deal with it. The alternative is unacceptable. You have come to the right place shaktima. At the very least everybody here knows what your going through. There is a lot of good advice and info to be found here as well. Just talking about it can be a comfort. You're not alone. Glen |
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Title: Re: Why!!!!?? Always in middle of deep sleep??? Post by stevegeebe on Dec 28th, 2003, 6:46am Welcome Cathy. Like Lee said, see about getting some o2. It has helped many here. You have made it through before and you will get through again. You are going to find it hard to make others understand the depth of this pain. Only another Clusterhead can know what it's like. Read the info posted, find a good Neuro and hang around. You're home now. A chronic will have to answer your question in regard to it being a curse...I'm episodic...thank God. Steve G |
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Title: Re: Why!!!!?? Always in middle of deep sleep??? Post by Woobie on Dec 28th, 2003, 7:12am Hello Shaktima.. ;;D Just wanted to say Hello- and welcome! I have nothing more to add to what everyone already said......... just HI from ME. Vibes, tina :-* |
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Title: Re: Why!!!!?? Always in middle of deep sleep??? Post by Woobie on Dec 28th, 2003, 7:13am on 12/27/03 at 23:32:07, Unsolved wrote:
HEY UE - check your email again!! |
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Title: Re: Why!!!!?? Always in middle of deep sleep??? Post by Patrick_A on Dec 28th, 2003, 10:18am Its the nature of the Beast! I used to wake up everynight at approximately 2:30 with a headbanger. I thought about setting my alarm clock for 2:15, so i could get up, get a glass of water and see if i could go back to sleep, hopefully to break the Beasts routine. But i figured it would just hit me at 5:00 or so. Prednisone and Verapamil broke my cycle, and i have been pain free since the middle of August! Patrick :) |
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Title: Re: Why!!!!?? Always in middle of deep sleep??? Post by BobG on Dec 28th, 2003, 1:35pm on 12/28/03 at 01:09:54, Charlie wrote:
Yep, something does start or stops. Serotonin. Copy/pasted rom the OUCH site: Spontaneous and 5HT-induced cyclic contractions in superficial temporal arteries from chronic and episodic cluster headache patients. Mathiau P, Brochet B, Boulan P, Henry P, Aubineau P CNRS UA 1489, Laboratoire de Physiopathologie et Pharmacologie Vasculaire, Bordeaux, France. Superficial temporal arteries (STAs) are abnormally dilated in the painful side during cluster headache (CH) attacks. We have assessed the possible dysfunction of these arteries by comparing in vitro the reactivity of STAs removed from the painful side of CH patients during a cluster of attacks with that of STAs from patients free of CH. The responses to KCl and norepinephrine (NE) of both types of arteries were similar. Serotonin (5HT) induced a classical dose-dependent constriction in arteries from non-CH patients, but systematically triggered rhythmic contractions in arteries from episodic CH patients. Arteries from chronic CH patients also showed spontaneous rhythmic contractions. In both cases, this activity was stopped by calcitonin gene-related peptide (CGRP) but, even in the presence of CGRP, it could be restored by low concentrations of 5HT. Thus, 5HT, unlike NA, can trigger rythmic activity in STAs of CH patients and may play a major role in CH through abnormal smooth muscle cell reactivity. For more click this http://www.clusterheadaches.org/library/serotonin/index.htm Bob P once explained the Serotonin/melatonin connection but I can't find it. Hey Bob can you explain it again? Please. |
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Title: Re: Why!!!!?? Always in middle of deep sleep??? Post by BobG on Dec 28th, 2003, 3:05pm Forgot something in my last post. Shaktima says “This disease truly has to be the devil, I can think of no pain I have ever had that equals this!” That’s because there is NO pain that equals a cluster headache. It is at the top of the list for painfulness. It’s the most magnificent, exquisite, malicious, excruciating pain of all. The best-of-the-best. Number one. The top dog. Congratulations, you’re in a very exclusive club. |
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Title: Re: Why!!!!?? Always in middle of deep sleep??? Post by Prense on Dec 28th, 2003, 3:10pm on 12/28/03 at 15:05:40, BobG wrote:
Aren't I the lucky one... ;;D |
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Title: Re: Why!!!!?? Always in middle of deep sleep??? Post by Mac on Dec 28th, 2003, 3:12pm Quote:
Cathy, just get your family and friends to look at this thread.Or print it off. I'll tell them. To the family of Cathy. Your loved one is suffering from a condition called cluster headaches. It is possibly the most painful thing a person can go through. People who suffer from both migraines and clusters say they would rather have a bad migraine over one cluster. Men have claimed it is easier being kicked in the groin than go through a 2 hour cluster attack.Women would sooner give birth. Having a limb amputated is preferable. Before they were called clusters (lame name) they were called SUICIDE HEADACHES.That in itself should tell you that this is no ordinary headache. There is no cure as of yet. In fact they don't even know what causes them.This is very real and you should thank your lucky stars that you don't get them. Sincerely, Glen(chronic) Quote:
I don't know if it's a curse to be chronic or not Steve. I read a lot of posts from episodics that are just starting thier cycles after being PF for months or years and they are truly panicked and upset. I've learned what to expect on any given day(only one minor attack over Christmas!) so I'm always prepared. I guess once I started on Imitrex Nasal and got a bit of control over the beast it made it easier to deal with. Gotta stay strong. Life goes on. Right Cathy? :) glen |
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Title: Re: Why!!!!?? Always in middle of deep sleep??? Post by Linda_Howell on Dec 28th, 2003, 3:26pm Shaktima, Check your instant messages. It's in the top right-hand corner of where you're reading this now. It will say.. Hey, Shaktima, you have 1 message" and then the date. Linda Howell |
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Title: Re: Why!!!!?? Always in middle of deep sleep??? Post by jonny on Dec 28th, 2003, 4:21pm on 12/28/03 at 15:12:31, Mac wrote:
Dude, I aint one of them, CH aint gonna damage me like that would....put me down for the 2 hour deal. .......................................jonny |
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Title: Re: Why!!!!?? Always in middle of deep sleep??? Post by Mac on Dec 28th, 2003, 6:29pm Quote:
I didn't say I would prefer a boot to the nuts. Just that I read on this site about a guy who had recieved such treatment and prefered it over having a cluster. It wouldn't be a boot up here anyways, more like a frozen muk luk ;;D |
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Title: Re: Why!!!!?? Always in middle of deep sleep??? Post by don on Dec 28th, 2003, 6:40pm Quote:
Did those guys say that before or after the lobotomy. |
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Title: Re: Why!!!!?? Always in middle of deep sleep??? Post by Mac on Dec 28th, 2003, 9:01pm So it appears that clusters aren't the worst pain a person can go through...I'll have to change my list. 1. 2.clusters 3.amputation of limb 4.giving birth 5.running out of beer ;) |
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Title: Re: Why!!!!?? Always in middle of deep sleep??? Post by chronic_chic on Dec 28th, 2003, 9:15pm hiya :) ok i can't comment on the getting kicked in the nuts thing LOL accidental amputation: i put a saw through my finger when i was 13 in industrial arts class...a week before my piano recital! ok yeah...i would agree the part where i was in shock staring at the saw in my finger and thinking, "damn..this can't be good!" definately didn't hurt as bad as these headaches! however...once i finally came to and realized what was going on...omg! however...clusters you have over and over and over again...so yea...it's definately a different kind of pain! i wouldn't want to put the saw through my finger day after day after day...hour after hour after hour! also...there're other pains worse than childbirth...but not in the head region...i've never actually compared how they feel to the feeling of waking up repeatedly throughout the night and wanting to smash my head through the wall because it is in my stomach and not my head...but it hurts damn bad that much i can say!!! (fortunately, i am currently in remission for the stomach issue) :) Lizzie :) |
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Title: Re: Why!!!!?? Always in middle of deep sleep??? Post by Unsolved on Dec 29th, 2003, 9:29am on 12/28/03 at 18:29:50, Mac wrote:
You mean to tell me that someone went in for treatment of Clusters and got a swift kick in the nads ? OMG .. I think I would have fired that doc (right after I kicked his Unsolved |
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Title: Re: Why!!!!?? Always in middle of deep sleep??? Post by CJohnson on Dec 29th, 2003, 10:00am An important aspect of cluster headaches is to understand that the attacks are "triggered", meaning something has to happen for the headache to occur. But, that something will only trigger an attack during the active cycle. In episodic sufferers, the table is set, so to speak, for however long your cycle lasts. In chronics, the table is always set. While these conditions exist (whatever they may be) you will get a headache whenever certain criteria are met. While you are sleeping, your brain is doing a bunch of different jobs. The way your brain does these jobs is by producing different amounts of chemicals at different times according to a schedule, and distributing them to wherever they are supposed to go. At some point during these jobs, the perfect combination of chemicals are in the right place at the right time. When this happens, your trigeminal nerve is stimulated in such a way as to trigger the headache. That is basically why you get a headache while in the middle of a deep sleep. That is not to say that only one kind of stimulus can trigger an attack, or that everyone will have attacks triggered in their sleep. Or even that the same stimulus triggers an attack for every clusterhead. There is probably more than one road that leads to CH. PFDANs -Curtis |
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