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Topic: Re: CHs....The awakening from sleep-type (Read 375 times) |
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Superpain
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Re: CHs....The awakening from sleep-type
« on: Mar 20th, 2004, 6:35pm » |
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I'm with ya man... I'm getting hit about 7 times a night for a week or 2 now, and before that at least 2-4 for the last 6 months at least 5 nights a week.
I usually wake up pretty quickly.
The bad ones for me are when I get off work and start to relax. Anywhere between 8pm and 11pm is the worst time. The ones at night for me aren't usually quite as long or as severe. I think it's because I'm more relaxed in the middle of the night as compared to late evening I'm coming down from being wouund up for a while, and it makes me freak out worse.
I've had these fuckin things for a long time, and as I've stated before, until last week had never heard from anyone with them, never had any meds that worked and have endured the pain by myself naturally, except for the occasional bottle of stadol, which as we all know doesn't do much.
I have some theories about them, one of which is that you have to develop a Zen like approach to the pain. Like the Kip scale for example... For me it only goes to 8 really. Because everything after 8 is a mental breakdown. The pain is no worse at 10 than at 8, it's just a difference in mentality. Don't get me wrong, I have reached 9 and 10 many times in the past!!! But it's been so long now I'm past the point of feeling "why me?"... Who cares "why me?"? All I know is that it IS me, and having a "why me?" attack in the middle of a severe headache sucks. It makes you weaker against the pain and inhibits your ability to deal with it. As for 10, my mom killed herself and I'm not going to, I've been to the emergency room before and that is just NOT an option, and to me a kip4 is just as depressing as an 8 which is the maximum physical pain level. Everything beyond 8 is a choice that you make. You must learn to focus and do everything in your power to keep mentally and emotionally strong while facing the beast, otherwise you lose...
The pain will make me tear the clothes and jewelry from my body, I often moan and groan, I sometimes scream, I cry, I shake, I sweat, I look like someone with MS having an epileptic seizure, I pray, I cry and scream more, I shudder with pain, sometimes I even throw up, but I don't ever give up. That's all 9 and 10 are, is giving up.
Have you tried O2?
Every headache I had last night I knocked out in about 2 min's with it. And after 18 yrs, that makes me pretty happy!
Good luck tonight.
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Chris
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I need a fully-automatic Imitrex injector !!
 
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Re: CHs....The awakening from sleep-type
« Reply #1 on: Mar 20th, 2004, 7:54pm » |
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You guys sound like a couple of real clusterheads. Until I found this site (thanx DJ), I really wasn't for sure that anyone else knew what I was going through. Sure, the docs said others had CH, but I've (Still) never met anyone with it before.
Waking up in the middle of the night is the worst for me. The pain is PEAKING and like Freddy, Imitrex is my only savior. I've been chronic for over 3 years now and I get most of my Imitrex by bumming samples off numerous doctors around town. (they know me now and keep me pretty well supplied).
Anyways...just wanted to say goodluck guys, hang in there...if I can handle this shit ~ you can too !!
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Superpain
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Re: CHs....The awakening from sleep-type
« Reply #2 on: Mar 20th, 2004, 9:38pm » |
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Freddy... HeHe... I've used that analogy (to myself) for many years now.(Freddy Kruger that is)
Freddy, try O2 straight off the hose with the welding regulator at at least 20 psi. 20-30 is enough pressure to fill your lungs quickly like your sucking off a balloon. Take big unimpeaded hits, holding each hit for 1-2 secs and hit again. Repeat till your ha goes away.
I'm not making any guarantee's, but it seems like the stories I hear of O2 not working for people are directly related to having to wait for the O2... I'm a newbie to all of this and I know everyone is different, but the point is to flood your blood with O2, and it seems to me that these ch's demand urgency, and that may very well be the problem for many people who O2 is not effective for...
Again I don't mean to step on any toes of the people who have success using the med regulators and masks. I mean if it works, great, but if it doesn't hit that fuckin tank like you mean it!
Works for me. 
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| « Last Edit: Mar 20th, 2004, 9:39pm by Superpain » |
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Chris
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cleon
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Re: CHs....The awakening from sleep-type
« Reply #3 on: Mar 21st, 2004, 12:24am » |
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I posted on here a week or so ago regarding something new that I am doing with this cycle. Someone gave me a SR (slow release) Tramal - what a diference it made and has made to my coping with this cycle. I can function better during the day and the day attacks dont knock me rotten. The night ones are a different story, as we know, once that bastard gets you when you are asleep, its all over bar the shouting.
I still use my usual medicaion, Narramig and buckets of Disprin, but even the night attacks I feel, are shorter in duration.
Tramal works in the body like Morphine does, can get it from 75 mg to 200mg. Can make some people sick.
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FZfan
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Re: CHs....The awakening from sleep-type
« Reply #4 on: Mar 21st, 2004, 1:25pm » |
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at best, the opiate type pain killers can provide a period of relief, but at the cost of carrying a buzz for several hours. Not that that's necessarily a bad thing. 
It will be a bad thing if it's the only thing you do to get relief. Personally, I see nothing wrong with taking one occassionally if you have an overriding need to get that several hours of relief. I have taken oxycontin a few times when nothing else would work to kill the pain and I had been awake for several days. You gotta know when you're taking something like this, though, that it's probably not a good thing and you need to find something else.
You should definitely try the non-rebreather mask if you did not in the past. That was my experience also. o2 was not effective for me until i got the non-rebreather and a high flow regulator. I'm not saying this will definitely work for you, but what harm is there in trying? It was like the difference between night and day for me.
Keep fighting Freddy. Hope they'll take you for the zomig trial. Try whatever you can to beat this monster.
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There is no such thing as a dirty word. Nor is there a word so powerful, that it's going to send the listener to the lake of fire upon hearing it. - FZ
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FZfan
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Re: CHs....The awakening from sleep-type
« Reply #5 on: Mar 21st, 2004, 5:08pm » |
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cool freddy! absolutely post anything you see that might be relevant. Sounds like you could be a great source of information.
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There is no such thing as a dirty word. Nor is there a word so powerful, that it's going to send the listener to the lake of fire upon hearing it. - FZ
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Liz04
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Re: CHs....The awakening from sleep-type
« Reply #6 on: Mar 21st, 2004, 5:28pm » |
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I have tried Maxalt, Imitirix, Neurontin, Prednisone, all sorts of stuff..and the ONLY thing that works is ZOMIG NASAL SPRAY. I SWEAR BY IT. it is expensive however....it comes in a box of six doses..cost of $188.00 per box. Sometimes I can use two to three doses a day.
Also the actiq lolly pops takes that pain away 90 percent of the time
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Liz04
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Re: CHs....The awakening from sleep-type
« Reply #7 on: Mar 21st, 2004, 10:22pm » |
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HI HF,
NO, I do not suggest asking your neuro for the actiq pops, they are for extreme circumstances only. and your doc should determine which if any pain med you should be on. I'm curious to know why more people aren't taking the zomig nasal spray. Don't people know that it is available by prescription. i take it daily. I keep reading about this trial study.....but i am not ready of people actually taking the spray itself.
nice pic
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Kevin_M
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Re: CHs....The awakening from sleep-type
« Reply #8 on: Mar 22nd, 2004, 12:02am » |
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Freddie,
Yeah, the ones you wake up with are always bad. That's because by the time they wake you up, they are well under way, like trying to stop a locomotive. I've waited up to 40 minutes for the nasal imitrex to kick in and overtake it. That's the dance with the ice princess time. Pretty bad.
Kevin M
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Luke63
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Re: CHs....The awakening from sleep-type
« Reply #9 on: Mar 22nd, 2004, 5:30pm » |
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Wanted to Butt in for a sec...ok? Hey superpain..I like your approach..and Freddy...listen to him...he sounds good. Ya know...im over the "why me" shit too...doesnt do any good does it?We all wish we had the instant answer....and instant drug..but we are all different correct? So what works for me...might not work for others...so dont bust your head thinkin that the other guy got "instant relief" from what he tried...because we all have to remember.......the other persons perception of pain..and I DO NOT discount that there is PAIN...and alot of it...we all feel and decipher pain differently....and we all cope with it in a way that our own bodies tell us to. I dunno...does this make sense? Someone tell me it does please. And as far as the nights...they are the worst Ive ever had too..always that fuckin night beast huh? Oh well I gotta get back to work...seeya folks....Luke 
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I think we should all get together and do a movie..."Night of The Clusterheads". George Romero would have nothing on us!!!
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