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rapunzel
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'sometimes you just need to howl"
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hi new friends
« on: Mar 9th, 2006, 2:11am » |
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I am back- I couldnt remember my password or where to find it, but lookie there- I had it saved as 'always logged in'.
I am on night- oh who knows- but I am trying to stay awake because I am at the insanity level of a cycle.
I went to the dr- who scheduled me for a waste of time cat scan for tomorrow. He also put me on pred- which has not worked. I picked up melatonin. has not worked.
I really really really am so tired tonite, but am trying to avoid another episode of hell. I dozed off at the computer about an hour ago, and heh heh, was awakened by my too familiar agony. Right now i am experiencing that cold, tingly after effect-but no pain so I am not complaining.
I have had approximately four-six episodes a night since my last/first post -cant remember how many nights ago it was. Today at work, I was drawn to the lidocaine/bupivicaine/all the caines- wouldnt it be nice if we could use the drugs to numb our heads during the pain? Wonder if tetracaine to the eyeball would stop the pain? Of course I didnt/wont try it, but it sure would be nice.
I just read a study/web page where someone linked clusters with sleep apnea- I found this interesting because my father experiences severe sleep apnea but no clusters. Wonder if there is a connection with me- dunno if I have sleep apnea. (for what its worth, I saw the magic mushroom cure too- funny how some things that I seemed so against earlier sound so nice at 2 am when I am on howevermany days without painfree sleep).
My husband has become convinced that I need to quit smoking and they will go away. Funny, my manager told me the same thing. Heh, I cant do that either- so i can add a feeling of failure on top of extreme exhaustion.
I sure hope this post doesnt sound like I am crazy- I feel crazy, sure, but I am hoping that I am managing to hold on to a somewhat sane exsistence.
I guess I was just checking in to say Hello- help me stay awake. 
Kim
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tessa_c2
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Re: hi new friends
« Reply #1 on: Mar 9th, 2006, 2:25am » |
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rapunzel i feel crazy alot to. lol i think it has something to do with the snickers. yeah im convinced its not smoking its the SNICKERS.
hope that you can have a peacefull nights sleep and that you feel better soon. im working till 6 am (est) tonight and ill be in and out of the the house till then.
if you can catch me on here in the between time maybe we can jump on chat smoke and talk about those damn snickers.
tessa
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"if you didnt define yourself for yourself, you'd be crunched into other peoples fantasies of you and be eaten alive" audre lorde
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rapunzel
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'sometimes you just need to howl"
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Re: hi new friends
« Reply #2 on: Mar 9th, 2006, 2:44am » |
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I sooooooooooooooo want to sleep- but Im afraid to go to bed.
I was just reading the thread about memory problems, and forgot to reply- lol. I work as a technician in the medical field and need my brain because if I screw up, patients can die. I have to really concentrate harder now than before.
My god, I wouldnt want sleep-deprived absent minded me working on me- not because of the clusters, but because im a blonde. I dont know where one cause of absentmindedness ends, and the other begins.
I think I would love a Snickers about right now. I have two hours left before tomorrow starts- almost made it thru the night, one stupid episode of hell. only one. I swear my pillow is calling me, I hear it but I know its just a trick.
Oh, I just remembered what I was going to add on the other thread- my husband and family. Love em. But my husband seems to think that I am normal when I am not in pain. Normal people do laundry, cook, clean, etc. Lately, I can sit in the chair. Be gellin'. Thats all I can do. Its not possible to even pretend that I care that the housework is waiting. And during an attack- he will try talking to me. No, no no you cant talk me thru the pain...really I am saying "SHUT UP"...it just comes out "Ummph". Sometimes, "erk"- which really means "no a *insert expletive here* cool washcloth will not help". I do love my husband and am grateful that he cares, but I am not sure how to help him thru this. I am certain he cannot understand how i can not sit still during the pain. My mom says i am trying to run from it. I dont think that is it either. Ha,ha,ha...I read something today that said sufferers may find relief doing pushups or jogging in place. yeah, right.
Im rambling- I am glad you replied. Nice to know someone is out there. Thank you.
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sandie99
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Wish it, dream it, do it - inspite the pain!
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Re: hi new friends
« Reply #3 on: Mar 9th, 2006, 2:56am » |
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Kim,
I'm so sorry you're in pain. I hope you're feeling better when you read this one. 
I'm not a smoker, never have. I still have clusters. Go figure. And according to what I've heard... if you quit smoking, you'll still have ch.
Best wishes & PFtime asap,
Sanna
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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tessa_c2
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Re: hi new friends
« Reply #4 on: Mar 9th, 2006, 4:44am » |
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memory problems, want to talk about memory problems
#1 was washing clothes, filled up the washer, poured in the gain and downy. walked away
FORGOT TO PUT IN CLOTHES
#2 put something in my trunk one morning around 10 am. walked away. around 5pm wanted to go to the store, couldnt find my keys. got my extra set went to walmart. about an hour later im leaving walmart and this very very very very very sexy guy pulled up trying to get my attention. i thought he was trying to get my #. he told me my keys were in my trunk.
#3 writing a letter, couldnt think of the word i wanted to use. sat and sat and sat OH YEAH i know it. damn i cant spell it. grabbed the dictionary. forgot the word. the word was phenom. (which i found out later wasnt in the dictionary, well not the one i had)
#4 went to feed my dog [Kahlua] got outside. said hmmmmmmm what a nice day to jump on the trampoline. jumped for a while, relived child hood a min. went back in the house. looked out my window about 45 min later, because i heard the dog barking. a neighbors dog was eating Kahlua's food.
FORGOT TO FEED THE DOG
granted not all happed within the same time period, months apart, plus im not blonde.
and i say boycott the snickers. you see what false security they gave the bald guy in the commercial.
*if anyone from the snickers co. is reading this im kidding 
ive never tried the push-ups or running in place will in an atack.
but i have lost one boyfriend to them. right when i thought i was going to pull out my eye to stop the pain. he says "well i guess no sex for me tonight" 
i wish i could tell you the rest but, my lawyer wont let me. you know might incriminate myself. 
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"if you didnt define yourself for yourself, you'd be crunched into other peoples fantasies of you and be eaten alive" audre lorde
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rapunzel
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'sometimes you just need to howl"
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Re: hi new friends
« Reply #5 on: Mar 9th, 2006, 6:26am » |
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I finally went to bed after my last post. Had four attacks of agony- ha, Im up.
Boyfriends....hm. Yep, back when these first began, made my b/f take me to the hospital during an attack. He did manage to help me convince them NOT to give me a spinal tap- then when we got home, and I was exhausted and doped up-he thought he was going to have sex. bwahahahahaha.
Thank you, your post made me laugh. I needed to laugh. By the way, my bf's name was Michael- wasnt the same guy, was it?
Oh, and the keys in the trunk- sexy guy story? LOL. I did once get stopped by a good looking man as i was pulling out of the parking space of store to tell me that the megagiant toiletpaper pack was on top the car...
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chewy
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How are you taking the prednisone and are you taking a preventative along with it?
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rapunzel
New Board Junior
'sometimes you just need to howl"
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Re: hi new friends
« Reply #7 on: Mar 9th, 2006, 7:53am » |
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The pred worked ten years ago, but it hasnt worked this time.
Its ten mg pills, taken in decreasing dosage over a two week period- started out six pills for two days, then five pills for two days, then four pills for two days, etc.etc.
They also gave me darvocet which dont work because who has time for a pain pill to actually be dissolved and work to take away a cluster headache that comes on with the speed of light- while you are asleep?
Its very sad, but I am limited to what the doctor will give me, and I continue to suffer until he figures out that his plan will not work.
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E-Double
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Re: hi new friends
« Reply #8 on: Mar 9th, 2006, 8:16am » |
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Hiya
This is a great resource to know like the back of your hand...print it out and give it to the doc
http://www.brightok.net/~mnjday/chtherapy.pdf
It will present the appropriate treatments that you should seek and your doctor should know!!!
If you want an abortive with the least amount of side-effects O2 should not only be requested but demanded from your doctor!!!
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
I have used Zyprexa as an abortive and have found it to work (for me) as fast as Imitrex and without the "hangover"
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1120904753
If you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.
With the exception of 10-12 times.....I have slept through the night since August '04 (went chronic in March 05).....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.
Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...
The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.
I stayed with melatonin and have had decent sleep overall. (Maybe I should start following my own advice again hahahaha!)
It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....
Like I said we are all different.
Best wishes, good luck & stay as positive as you can!!!!
Eric
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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marlinsfan
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Re: hi new friends
« Reply #9 on: Mar 9th, 2006, 8:37am » |
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Ditto to what E said. Also tell you husband to come here, there is a section specifically for supporters.
How much melatonin are you taking? 9 mg works for me, other need 12 mg, and others still make do with less.
Hope tonite is better than last night.
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ABarham
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Re: hi new friends
« Reply #10 on: Mar 9th, 2006, 9:30am » |
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It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....
My son has just started with "mel" and I can't imagine the mild depression being any worse than the horrific pain. BTW he was PF last night and very excited this morning. No grogs or anything.
Hope this ends for you soon.
LOL Mama Weezer
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Louise
Mother of CH son
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dejay
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Re: hi new friends
« Reply #11 on: Mar 9th, 2006, 3:51pm » |
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Hey rapunzel, I just got my password stuff straightened out also, so I posted yesterday but I've been reading the boards daily for 2 months. I know it really sucks to be back here but thank God for this board and the people on it. I felt so lost & scared before I found this place. You know what it like when you mention the word Headache to someone, they don't get it and starts making me think I'm crazy, which I may be besides.
Anyway, hope you get some relief soon.
dejay
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Richr8
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Re: hi new friends
« Reply #12 on: Mar 9th, 2006, 4:04pm » |
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on Mar 9th, 2006, 2:11am, rapunzel wrote:| I sure hope this post doesnt sound like I am crazy- I feel crazy, sure, |
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Nah! Kind of sounds like any of the rest of us at some time in cycle.
How much Pred and Mel are you taking? Both work for me. Prednisone at 60mg and melatonin at 6mg gets me just enough sleep.
PFDAN
Rich
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| « Last Edit: Mar 9th, 2006, 4:06pm by Richr8 » |
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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BarbaraD
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Hugs to ya
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Re: hi new friends
« Reply #13 on: Mar 10th, 2006, 8:06am » |
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Crazy - I'm NOT crazy -- I'm just eccentric.... (or however you spell -- just sorta whacky).
I do the melatonin at 12mg and it gets me thru the nights. The day I can handle (most of the time). I'm on topamax (take it at night so I don't have the BAD side effects - 100mg).
Pred never did much for me except make me eat everything in sight (put on about 100 pounds).
Keep O2 and coffee handy and try to abort at about a 4 (most of the time it will work). If that doesn't do it, I take cafergot after about a 7-8 and that does the trick most of the time. (I'm chronic so ....)
You just have to find a solution that works for you. Read up on everything before your next visit with your neuro and be "informed". Most of the docs aren't so we have to educate THEM.
Sidenote: If you take the melatonin: It may take a couple of weeks to BEGIN working - don't give up after one dose (ask me how I know that!). Some say the first few doses it makes them worse, but if you'll stick with it for a couple of weeks till it gets in your system, I think you'll find that you'll start getting some sleep at night and that helps with the exhaustion part.
Wishing you a short cycle....
Hugs BD
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What don't kill ya, Makes ya stonger!
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Karla
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Re: hi new friends
« Reply #14 on: Mar 10th, 2006, 2:41pm » |
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Snickers? Maybe we should do a poll on that and see how many of us eat snickers? Hmm my favorite! JK My dad has sleep apnea also but I was tested and do not have it. I would highly recomend the oxygen that E posted about. I love your name. Repunzel was my favorite story book character. Also I don't smoke and I still have ch. So I don't think you will find any relief by quitting at least as far as your head goes. It is nice to meet you. I hope and pray you find relief soon. Maybe also ask your dr about verapamil(calan) up to 960mg/day and/or lithium(900mg/day).
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Karla
suffer chronic ch
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Proud Mom of Chris USMC Semper Fi
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Jasmyn
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Re: hi new friends
« Reply #15 on: Mar 11th, 2006, 2:42am » |
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Kim, I cannot add anything more than what the others said, very good advise.
Wishing you some sleep soon, it helps to be a bit insane when you have CH
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Jazz
Madness is proclaimed by society’s inability to accept its own infallibility
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