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Topic: I'm new here....here's my deal. (Read 409 times) |
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cca
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I'm new here....here's my deal.
« on: Apr 9th, 2003, 11:26am » |
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Let's see. I'm 30. Male. Have been diagnosed with CHs for almost 10 years. Made it through college and law school. Currently practicing law now, in the southeastern part of the USA. I generally have CH bouts 4-8 times per year. Mostly associated with climactic changes. The worst part is the Spring and I think that is because I also have allergies and where I live, the pollen count doesn't count high enough. So, I take my Allegra D twice per day, despite the fact that it can make me a little sleepy, I have grown accustomed to it. I am currently in a CH cycle that began 3 days ago. Normally, my cycles last about 3-4 weeks, however, the Spring Attack of the Monster can last as long as 6 weeks.
I have fought with insurance companies frequently over paying for medication. 9 oral tablets of Imitrex does not do the trick. (That's the number they pay for in a 30 day period.) One insurance company (2 years ago) would pay for the oral doses, but not the shot. (No subcutaneous injections allowed other than insulin). I carry an injector with me to court. I rise every morning at about 5am during the cycles.
You all know the song and dance about what these things feel like. I have made a real effort to hide my discomfort and develop a tolerance to the pain. Most of my co-workers do not have a clue that I have these things. I don't know if any of you have nose bleeds, but I tend to have them with each CH....worse in the spring, again due to allergies. Of course, I also have the droopy eye, the drippy nostril, and all I want to do is put my head in a vice and clamp it as hard as I can.
I did biofeedback a few years ago. I think that helped me learn to function more normally during cluster periods. It doesn't relieve the pain, but helps me relax in spite of it all.
As far as pain medication is concerned, I've tried everything imaginable. I tend to find that if I take something like Tylenol PM, it doesn't keep me from waking up the next morning without a headache (and in fact, according to my charts, the pain is often worse) but at least I get some sleep, which, at times, I desperately require.
I also believe in water consumption, but then again, I believe in year round water consumption of at least 64-72 ounces per day. If you've never gotten yourself to drink that much water...not juice, not sodas, etc...but at least that much pure water, give it a try. Yes, you will have to urinate a ton the first week or two, but the human body is an amazing thing, and it will adjust to the influx of water, quickly. Once you get past that adjustment period, stick with it. Don't go for the carbonated waters and flavored waters....just drink water.
Second to last thing... I make an attenpt to avoide caffeine like it's the plague. That means no sodas (unless caffeine free) no tea, no coffee, and yes *gasp* no chocolate. You of course get caffeine in lots of things, but don't add it. Why? Because I've never felt better than after the 2 week withdrawl period I went through when I stopped the intake of so much of it. In general, I don't drink anything that is considered a diarhetic. Also, cutting out as much sodium as possible has helped too.... (remember what high sodium does to your internal water table)
Finally, I don't exercise like I should, but in the past, have found that exercise, helps a whole bunch. 3-5 times a week of 30+ minutes of cardio per day made me feel better.
I've kind of learned to compartmentalize the pain so that I can function. Would be more than happy to share more thoughts on that. Found this site to be very interesting, and am pleased it is up and running.
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Roxy
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Re: I'm new here....here's my deal.
« Reply #1 on: Apr 9th, 2003, 11:45am » |
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Hi cca, and welcome to the board. Sounds like you've got a handle on these things....as well as anyone can get a handle on them. The water therapy works for quite a few people, but the caffeine helps some people abort the ch's.
Have you ever tried 02 to abort? I works miracles for most people. Cheap, easy and no side effects. It's a shame you can't get the injections. They seem to be the only thing, other than the 02, which work for me. There are quite a few ways to get around the insurance companies and get the shots. This was posted in another thread. You might give it a try.
on Apr 8th, 2003, 7:37pm, achinghead wrote:There was a post a while back regarding Glaxo Smith Kline Reimbursement... So I called it and got myself a caseworker.. She has dilligently worked with my neuro and ins company and I FINALLY got my approval today for unlimited imitrex injections.. Heres the number
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I think it would be worth a try. Try to get the 02 as quick as you can.
Hope your spring cycle is easy on you,
Tracey
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Only two things are infinite, the universe and human stupidity, and I'm not sure about the former. (Einstein)
I used to have a handle on life....but it broke.
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brain_cramps
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Re: I'm new here....here's my deal.
« Reply #2 on: Apr 9th, 2003, 11:48am » |
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cca
Do you have a name?
For the last 5+ years, I have been med-free. Luckily, I am episodic with short cycles. I have had to try 'develop' a way to get thru the headbangers that hit an hour after bed as well as other times (ie compartmentalize). I try to think "OK, I've been thru this before AND it didn't kill me. I know what the beast can throw at me, and I've been able to survive it." Occasionally, the bastard shows me a trick that I hadn't seen before, but I know what its like for next time. (Hoping to have o2 for my next cycle)
I really find that sleeping in an upright position (recliner) with the window open makes a difference for me. Doesn't eliminate them, but they don't usually seem to be as intense or as frequent.
'Water X 3' also seems to make a difference for me.
sit back, start reading and don't be afraid to ask questions. There is soooooooo much info and sooooooo many good people here.
PFDAN,
grant
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| « Last Edit: Apr 9th, 2003, 11:51am by brain_cramps » |
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K.
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Re: I'm new here....here's my deal.
« Reply #3 on: Apr 9th, 2003, 12:07pm » |
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Welcome cca
Glad you found us. You will get lots of support here. It was suggested you try and get O2. O2 is my best abortive. I wouldn't have believed it if I wouldn't have tried it myself. It has to be used correctly in order to be effective. If you're interested, there is a ton of information on this site about it.
Good luck to you and hopefully this cycle will be a short one!
Karen
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catlind
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Re: I'm new here....here's my deal.
« Reply #4 on: Apr 9th, 2003, 12:36pm » |
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Welcome aboard cca,
Lawyer eh? Man I feel sorry for the poor bugger on the other side of you when you get a CH LOL
Glad you found us, it sounds like you have a good thing going for coping with your head. Read up and see what else is out there these days, and join the gang in the fight to enlighten the medical community about the nature of the beast.
Cat
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suzy617
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Re: I'm new here....here's my deal.
« Reply #5 on: Apr 9th, 2003, 12:43pm » |
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Hi CCA!
suzy
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cootie
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Re: I'm new here....here's my deal.
« Reply #6 on: Apr 9th, 2003, 1:11pm » |
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Hey kinda cool to have a lawyer on here......hope ya find sumthin that works for ya cca.......am sure ya can learn what ta do or not on here plus maybe a few tips. Tipster Pam
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Cause and Effect......"Cause is the effect concealed, Effect is the cause revealed"
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cathy
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Re: I'm new here....here's my deal.
« Reply #7 on: Apr 9th, 2003, 5:00pm » |
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Hi cca hope your cycle is over quickly for you.
Cathy 
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My own tears would mean nothing to me, if I could stop you from just shedding one....
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Wendy the Brit
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Re: I'm new here....here's my deal.
« Reply #8 on: Apr 9th, 2003, 5:31pm » |
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Hello cca
Hope that stands for classy, charismatic American, not cross, clustered not a very nice person!
Welcome to the madhouse. Hope to talk to you soon.
Wendy the Brit
P.S. Cathy, what is with the foottapping picture, are you bored and irritated?
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Wendy the Brit
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Re: I'm new here....here's my deal.
« Reply #9 on: Apr 9th, 2003, 5:34pm » |
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P.P.S
The word censor on here is very odd. Dear Jonny can swear like a trooper, effing and blinding to his heart's content and I can't put the word a...hole.
W
I can write badgerwank though because no computer recognises that as rude.
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cathy
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Re: I'm new here....here's my deal.
« Reply #10 on: Apr 9th, 2003, 5:38pm » |
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Bored...? Irritated....? nope Ree found it for me cos I outgrew Winnie the Pooh...actually that's a lie I don't think anyone ever outgrows Winnie The Pooh....! hope you finished the hoovering before you sat your bum down..
Cathy your side of the pond ;D
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My own tears would mean nothing to me, if I could stop you from just shedding one....
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achinghead
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Re: I'm new here....here's my deal.
« Reply #11 on: Apr 9th, 2003, 5:43pm » |
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welcome cca... sorry you have to be here but arent we all... try the glaxo welcome number I posted yesterday.. In 1 week I was able to get unlimited imitrex injections.. the nasal spray and pills have not worked for me.. The 02 works great... this board is full of help.. all you have to do is ask.. again.. welcome aboard
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Wendy the Brit
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Re: I'm new here....here's my deal.
« Reply #12 on: Apr 9th, 2003, 5:44pm » |
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Better not hijack cca's thread but Cathy, you do make me sound like a really sad f..k who only ever does housework. Actually I've just finished my shift in the massage parlour where my specialism is leather and domination.
W
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catlind
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Re: I'm new here....here's my deal.
« Reply #13 on: Apr 9th, 2003, 5:50pm » |
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Wendy,
My understanding is that not so long ago there was a 'hacker' here that was into beastiality so words that go with that are sensored. Like sheep sh-eep and a-hole because of the fudge factor implications hehe
Cat
Hmm, sheep is fixed LOL
Okay, looks like all other words are good to go Wendy
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| « Last Edit: Apr 9th, 2003, 6:01pm by catlind » |
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Wendy the Brit
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Re: I'm new here....here's my deal.
« Reply #14 on: Apr 9th, 2003, 5:54pm » |
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Oh dear, hijacking again, sorry cca!
Cat
The hacker into beastiality would love badgerwank then. What words can I use when I want to insult people then
W the B
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CathiP
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Re: I'm new here....here's my deal.
« Reply #15 on: Apr 9th, 2003, 6:25pm » |
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Wendy, In my experience, clusterheads are QUITE creative!!! I highly doubt that any one of them might have trouble expressing themselves.........Methinks I'll make badgerwank my vocab word for the day.....now I'll be entertained all evening, conjugating it, using it in a sentence-maybe I'll write a poem with it....now, i'm gonna have some fun!!!!
Cathi
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Wendy the Brit
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Re: I'm new here....here's my deal.
« Reply #16 on: Apr 9th, 2003, 6:31pm » |
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CathiP
(Honest cca, last post on your thread, we're not mad really)
Cathi
Have you heard of cockney rhyming slang?
We need a word for clusterheadaches to use in London. Could you come up with one?
Just to give you the idea of how it works in case you have never heard of it.
Chalfont St Giles = Piles (i.e. my Chalfonts are killing me today)
Brown Bread= Dead (i.e. my pet cat is brown so I buried it)
Plates of meat=Feet (i.e. my plates are killing me today)
Get the idea?
All suggestions welcome via email or a separate thread
W the B
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Tony_M
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Re: I'm new here....here's my deal.
« Reply #17 on: Apr 9th, 2003, 7:41pm » |
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Great that first welcome graphic gave me an instant CH
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Virginia
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Re: I'm new here....here's my deal.
« Reply #18 on: Apr 9th, 2003, 7:58pm » |
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Hi CCA-
Welcome to the family! Sorry you had to join us but this is the place to be if you've got ch. We're a neurotic bunch here, but you'll catch on..
A lot of the folks here are just plain nuts...the rest of us are just Democrats. ;D ;D ok, ok....don't kill me...
I've got to say I believe in the water therapy as well. I'm a chronic sufferer and I started drinking a gallon a day a few months ago and it really keeps the 10's away.
chime in whenever you get a chance!
Virginia
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The Clusterhead formerly known as 9erfan.
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Not4Hire
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Re: I'm new here....here's my deal.
« Reply #19 on: Apr 9th, 2003, 8:06pm » |
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....sorry cca......sometimes a thread just goes OFFFFFFF....
but ....Dubya the Bee....how the *badgerwank* do ya get to *piles* from * Chalfont St Giles*...???
i wanna play, but .......?
(mandatory CH content: read up...join OUCH.....come back....)
;D
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Mantra: This will NOT kill me...This will not KILL me... This will not kill ME...
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Azrael
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Re: I'm new here....here's my deal.
« Reply #20 on: Apr 9th, 2003, 10:44pm » |
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Welcome to the board! Sorry that the beast is slowly inserting broken shards of glass into your eyes, and when he can't fit anymore glass, he beats your cranium with a sledgehammer, until he knocks them all out again, then starts over from square one. Welcome to the family! Good luck!
PFDAN...................................... Drk^Angel
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cootie
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Re: I'm new here....here's my deal.
« Reply #21 on: Apr 9th, 2003, 10:57pm » |
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Wow now you can say sheep....that was my first censor'd word on here....how bout an-i-mals......ok......I'll find out......animals......that was my second word censor'd.....made me feel so dirty (har-har)......but I can cuss jus fine Pam....... (ok....off thread agin I know......skewz-me....sorry cca)
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| « Last Edit: Apr 9th, 2003, 10:59pm by cootie » |
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Cause and Effect......"Cause is the effect concealed, Effect is the cause revealed"
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Woobie
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Re: I'm new here....here's my deal.
« Reply #22 on: Apr 10th, 2003, 7:43am » |
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on Apr 9th, 2003, 10:44pm, Drk^Angel wrote:Welcome to the board! Sorry that the beast is slowly inserting broken shards of glass into your eyes, and when he can't fit anymore glass, he beats your cranium with a sledgehammer, until he knocks them all out again, then starts over from square one. Welcome to the family! Good luck!
PFDAN...................................... Drk^Angel |
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Missed you Drk!!!
Welcome to the board .. CCA...
I know you'll find everything here you need here...
Don't be afraid!!
LOL
Tina 
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Mikey
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Re: I'm new here....here's my deal.
« Reply #23 on: Apr 10th, 2003, 8:20am » |
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Welcome cca Be careful not to loose pieces of yer brain when you bend over to pick up chunks of bone that the beast has ripped from your skull! ( starting to sound like DRK now) Keep us posted with whatever you do with Docs and meds.
Mikey, 
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I love to ROCK very HARD!!!
CHRONIC and going crazy!! Want to come too?
Hope for PFDAN, peace and safety to you all!!
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Wendy the Brit
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Re: I'm new here....here's my deal.
« Reply #24 on: Apr 10th, 2003, 5:20pm » |
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Dear not4hire
Cockney RHYMING slang.
You use a word that rhymes with the real word (don't ask me why, been going on for generations in the East End of London).
e.g. I went up the apples and pears, had a Rosie Lee and a hit and miss, shaved my boat and rubbed my Chalfonts.
Translated means: I went upstairs, had a cup of tea and a p.ss, shaved my face and rubbed my piles.
( Boat Race rhymes with face, Chalfont St Gile rhymes with piles)
Think of Dick Van Dyke's very bad impression of an East End accent in Mary Poppins and you have the voice somewhere nearish.
Does this make any sense at all to America? I think I'd better go to bed again.
W the B
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