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amber
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Just wanted to formerly introduce myself :)
« on: Mar 6th, 2003, 5:08pm » |
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Hello all 
I wanted to say hi to everyone here. My name is Amber and I'm from Canada. I've had headaches (formerly diagnosed as hormonal migraines....if you've ever had that one raise your hand high!) since I was 16. They would come about once a week. They always came with alcohol, no matter how much i drank and how much water I took with it. They came with sleep deprivation or odd sleep hours, my periods (the onset of them). And the came with weird things, like the changes of barometric pressure.
They seemed to come about once a week, which didn't sound like hormonal migraines. I didn't have nausea, or light sensitivity or sound sensitivity, although I did get annoyed with ppl when I had them . I could take an Imitrex and within about 4 hours the headache was gone. Come to think of it, I always had some sort of sensitivity on that side, and was popping ibuprofen to avoid taking imitrex. Perhaps those were shadows. But at the time, I wasn't looking for clusters...I was told I had migraines.
My headache continued to always be on one side of my head. Finally this last august, something weird happened. I got the headache more and more frequently, until one day, it just never left. I've had it almost every day since, and to be honest, I think the shadows are there pretty much all the time, so I don't really know of a time where I don't have a headache. This is the first time in my life where I've had a real full blown attack that I couldn't handle.
The year before this I was diagnosed with another disabling illness but we'll leave that to another message board 
So now, i'm working with all the doctors...some of them are the best there are, which i'm grateful for...but I just wanted to say that these boards have been an invaluable resource for me...both emotionally and with knowledge...so thanks
Amber
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Mark C
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Re: Just wanted to formerly introduce myself :)
« Reply #1 on: Mar 6th, 2003, 5:38pm » |
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Hello Amber,
Welcome to the board. Surf the links here and on the OUCH site, much stuff to learn.
Good Luck,
Mark
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amber
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Re: Just wanted to formerly introduce myself :)
« Reply #2 on: Mar 6th, 2003, 5:55pm » |
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Thanks for the welcome Mark
Became and OUCH member a few weeks ago, and have been scrounging for information every since
Amber
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suzy617
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Re: Just wanted to formerly introduce myself :)
« Reply #3 on: Mar 6th, 2003, 6:15pm » |
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Hi Amber and welcome.
To me, it doesnt really sound like what you have is CH but what do I know...
Good luck though,
suzy
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When God measures men, He puts the tape around the heart, not the head.
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cbolony
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Re: Just wanted to formerly introduce myself :)
« Reply #4 on: Mar 6th, 2003, 6:42pm » |
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Hello Amber take the cluster quiz on the left side of the board.When I get ch i get 3-4 a day the cycle runs 6-8
weeks.If you take imitrex for you headaches and it takes that long to kick in you must be taking the pills.Try
the imitrex nasay spray 15-20 mins or imitrex injections
about 10 mins to kick in
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jonny
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Re: Just wanted to formerly introduce myself :)
« Reply #5 on: Mar 6th, 2003, 6:51pm » |
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on Mar 6th, 2003, 6:15pm, suzy617 wrote:Hi Amber and welcome.
To me, it doesnt really sound like what you have is CH but what do I know...
Good luck though,
suzy |
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Dildo.......Ditto!!!
............................jonny
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amber
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Re: Just wanted to formerly introduce myself :)
« Reply #6 on: Mar 6th, 2003, 7:41pm » |
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Perhaps at that time (age 16-23) I did not have cluster headaches. I was only having about one headache a week.
I do still only have the pills as the doc does want me to just journal at this point with nothing to relieve the ha's. (to see how long these things last. Now my headaches are daily, lasting anywhere from an hour to several, with shadows in between. Sometimes imitrex doesn't even help. Most things don't help, actually. And I have taken the cluster quiz. Thank-you for the suggestion.
Funny, but I feel the need to defend my headache here, which is not such a good thing. heheh..so much for a support site Guess I'll just go with what the specialists say
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jonny
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Re: Just wanted to formerly introduce myself :)
« Reply #7 on: Mar 6th, 2003, 7:55pm » |
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on Mar 6th, 2003, 7:41pm, amber wrote:
Funny, but I feel the need to defend my headache here, which is not such a good thing. |
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Yes it is a good thing and if you become a member of this family you will see it in time.
This site is for CH and CH only if people have questions why not answer them unless you hide something?
This is not a "Every pain site" and you would know this if you came through the front door of this site.
If you have CH you are more than welcome to join this family, if you dont we will help you find the help you need.
.................................................jonny
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amber
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Re: Just wanted to formerly introduce myself :)
« Reply #8 on: Mar 6th, 2003, 8:24pm » |
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Jonny,
Seems like we've gotten off on the wrong foot...
According to the docs at the montreal neurological institute, which is world reknown, I have cluster headaches.
As far as coming in through the front door, I've been here for about 3 weeks now, listening quietly, doing lots of reading, seeing where everyone is coming from. The fact that cluster headaches are new to me makes me feel a bit awkward, and I was told to properly introduce myself as I would get a "warm response". That apparently isn't going to happen.
I wish you many pfdan's.
Amber
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suzy617
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Re: Just wanted to formerly introduce myself :)
« Reply #9 on: Mar 6th, 2003, 8:38pm » |
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Amber, I'm sorry if I offended you in any way. Just was my opinion from reading that imitrex took 4 hours for relief and that you have the headache everyday and it never leaves just didnt seem like the "classic" CH to me. You can be hit by CH everyday but they do end, most between 1-3 hours. I was just thinking maybe it could have been something else since in your original post you did not state that you were diagnosed with CH.
Sorry, but I was welcoming you believe it or not.
suzy
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jonny
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Re: Just wanted to formerly introduce myself :)
« Reply #10 on: Mar 6th, 2003, 8:41pm » |
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on Mar 6th, 2003, 8:24pm, amber wrote: and I was told to properly introduce myself as I would get a "warm response". That apparently isn't going to happen.
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LMMFAO.........Who fed you that BS?
...................................jonny
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2late
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Re: Just wanted to formerly introduce myself :)
« Reply #11 on: Mar 6th, 2003, 8:47pm » |
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welcome aboard amber! it sucks you were lookin'......glad you found us. good luck! ...........Jack
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Lori
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Re: Just wanted to formerly introduce myself :)
« Reply #12 on: Mar 6th, 2003, 9:50pm » |
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Hello Amber,
I hope you can understand that you are welcome here if you indeed have clusters but people here want to help you find the proper help if you don't. That's all. I must admit, from your original description, it really doesn't sound like CH. No one is trying to chase you away if you have CH. Just trying to make sure this is the right place for you, incase it wasn't CH.
Hope that made sense. Wish you didn't have to be here, but glad you found this site.
Painfree days to you!
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Blessings and PFDAN,
Lori
Psalm 23:4 ~ Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me.
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Prense
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Re: Just wanted to formerly introduce myself :)
« Reply #13 on: Mar 6th, 2003, 9:55pm » |
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If you could tell me I didn't have CH and make it true, I'd be grateful.
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JDH
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Re: Just wanted to formerly introduce myself :)
« Reply #14 on: Mar 6th, 2003, 10:25pm » |
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on Mar 6th, 2003, 9:55pm, Prense wrote:| If you could tell me I didn't have CH and make it true, I'd be grateful. |
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amber
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Re: Just wanted to formerly introduce myself :)
« Reply #15 on: Mar 6th, 2003, 11:37pm » |
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ain't that the truth 
when I went to the doc I had all this documentation about CPH, because I was determined to believe it was that (see at first my diagnosis from a previous doc was chronic migraine which is way off base..this was a second opinion). Anyways I was HOPING for cph because at least it is treatable. Alas, they said no, they said "you be a cluster girl". I cursed and whined and found the OUCH page, and then found this one. Been reading you guys ever since.
I have to say that this site is such a great wealth of knowledge. I wish that the docs knew this much I feel like I'm in this international focus group (of like 12 billion people).
I do realize that my original post did not confirm or deny my clusteredness, so I do apologize for any misunderstandings. Thanks again for your help 
Anyways, seeing as CH are all pretty new to me, and to my new doctor, I will remain an onlooker for a while, gathering info. My doctor believes me to be a cluster sufferer. I wish that I wasn't. And to be honest, I'm still looking at other options. I realize that these pages are only for CH's, so if for some reason, in the future, my diagnosis changes (which seems doubtful at this point), I will retire my position as rowdy new girl, and thank you for your kind ear and information
Again, my apologies for the misunderstandings.
pfdan's
Amber
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Charlie
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Re: Just wanted to formerly introduce myself :)
« Reply #16 on: Mar 7th, 2003, 6:55am » |
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Welcome aboard. We're a cranky bunch but I hope you stick around
Charlie
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das
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Re: Just wanted to formerly introduce myself :)
« Reply #17 on: Mar 7th, 2003, 8:28am » |
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Amber,
Seeing as you admitted that your Neuro doesn't appear to know that much about CH, you should look into finding a place that does. The Montreal Migraine Clinic has neuro's that specialize in CH. Don't let the name fool you. If it wasn't for them, I would probably still be taking advil for my CHs. My advice would be, don't let a neuro's enthusiasm fool you into believing they know enough about them. Usually their pride and ego will have them believe they know about CH... when usually they don't. I am sure the Montreal Neurological Institute has good neuro's for things other than CH, but maybe they don't have experts in our field. That is often the case since CH is such a relatively marginal disease and is not fatal or degenerative.
Good Luck
DAS
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Ann
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Re: Just wanted to formerly introduce myself :)
« Reply #18 on: Mar 7th, 2003, 8:37am » |
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Hi Amber! and Welcome.
These folks can be a rowdy crew, but their intentions are always to help. So be patient, give as much info as you can, and thicken up your skin girl! You won't regret your stay!
hugs
Ann
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amber
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Re: Just wanted to formerly introduce myself :)
« Reply #19 on: Mar 7th, 2003, 11:10am » |
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oh lol
no i said that wrong
the migraine doc knows about them...i just haven't been seeing this new one long. I've had to see several neuros. 2 that knew absolutely nothing. This one knows his stuff...when i said "new to me and my neuro" i meant that i'm new to him.
having said that I'm always looking for more info.
Take care
amber
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Roxy
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Re: Just wanted to formerly introduce myself :)
« Reply #20 on: Mar 7th, 2003, 11:34am » |
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Hey Amber....welcome
Sorry about the diagnoses....really sucks when you actually hear those words...'clusterheadache', doesn't it?
Your one post said you'll just hide in the background....why? We can all use help, support....and some humor from everyone.....so, don't be shy .
Just keep on reading......this is the best group of people in the world.
PFDAN,
Tracey
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Re: Just wanted to formerly introduce myself :)
« Reply #21 on: Mar 7th, 2003, 12:15pm » |
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on Mar 6th, 2003, 11:37pm, amber wrote:| ...my position as rowdy new girl... |
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You don't seem too rowdy yet. Lets see what we can do about changing that. ;D
always willing to help (who I'm not sure ),
grant
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