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Topic: Hi there (Read 463 times) |
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cleo0526
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Hi,
I'm very new to the whole idea of cluster headaches. I've been a headache sufferer most of my life and especially since 1999. I'm going to be 28 years old in February.
I've had physical therapy because one doc. thought my neck was out of whack. I regularly see a chiropractor. I've had a CAT scan to rule out brain tumors (as they run in my family). I've been put on meds and off meds. I've had a mouth night guard.
So far, no one has been able to tell me what my headaches are or what causes them. Then i got an email from RealAge and it had a headache test. I took it, and wham: cluster headaches. I thought, hmmm, don't know much about them. So I read up.
I certainly intend to see a doctor again, after I've moved (moving in a few months). But I'd like to get an opinion (NOT a diagnosis) from those of you who probably know a great deal more than me.
Here are my symptoms:
I can remember only one specific day since 1999 that I didn't have a headache of some degree. (and what a blessed day that was!!!). My head pain is constant. THere is always a dull throb or ache. But then I get ones that shoot pain down through the center of my head and out my eye. I've had my entire head jerk to the side and squeeze my eye shut because it felt like a poker in it. I wake up about once every two weeks or so with a pain so bad that I can't move or breath hardly. Every beat of my heart makes my head kill. If I had a gun handly I'd have probably tried to shoot myself to rid the pain. I don't do much. I work (but have had to go home on many occassions because of the headaches). I'm cranky all the time. There is ALWAYS a pain in my head.
Any ideas? Suggestions? Anything?
Thanks, Cleo 
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Brew
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Re: Hi there
« Reply #1 on: Dec 19th, 2006, 2:04pm » |
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Welcome. I'm sorry for your pain, but glad you're here. Tell us more. What meds? Are you currently working with a neurologist who specializes in headaches? Have you tried oxygen therapy?
What you describe does not sound like cluster headaches to me (and I'm not a doctor, mind you), but you should take the cluster quiz found at the left margin of this page.
Again, welcome. There are lots of folks here ready to help.
Bill
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| « Last Edit: Dec 19th, 2006, 2:05pm by Brew » |
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cleo0526
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The town I live in is, well, pathetic. Most of the doctors (and I assure you, I'm not the only one who feels this way), tend to lean toward not believing anything their patient tells them...especially if you are a woman.
One doctor I went to about my headaches gave me ONE imitrex pill and told me to take it when I got a BAD headache. I did. I noticed nothing happened and the headache stayed bad. I called him a day later and told him. He said my headaches were obviously not migraines or anything I should be worried about and that was that.
I opted to see a female doctor several years after that. She told me that there was "no possible way" I've suffered with contant headaches for as many years as I "claim" and that I was exaggerating.
I've taken Aleve, Ibuprofen, Hydrocodone, Aspirin. Anything anyone would give me with the hope that my pain might LESSEN. Nothing helps. I have found absolutely nothing that can stop the pain.
I've not tried Oxygen Therapy and there are zero neurologists in this town. However, as I mentioned, I will be moving soon and intend to see someone (once I have the money to go).
From everythign I've read, I do not believe I have tension headaches or migrains. I definitely, if I do have cluster headaches, do not have eposdic, as I truly have pain in my head every minute or every day for years and years. I have no social life anymore. At least my husband is understanding. Brings a whole new meaning to "I have a headache". 
Cleo
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Brew
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Re: Hi there
« Reply #3 on: Dec 19th, 2006, 2:58pm » |
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I know it's frustrating. You must get in to see a neurologist who specializes in headaches right away. Also, take the quiz. This will help you determine whether or not it's cluster headaches from which you suffer. The contstant pain tells me no, but like I said, I'm not a doctor.
If you can, travel to the new city where you'll be living for an appointment with a neuro before you move. Following is a link to a list of sufferer recommended doctors and where they're located:
http://www.ouch-us.org/chgeneral/doctors.htm
Good luck, and keep us posted!
P.S. - Read, read, and read some more. The links on the left as well as the O.U.C.H. website.
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GeorgiaPeach
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Re: Hi there
« Reply #4 on: Dec 20th, 2006, 8:22am » |
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I have to agree with Brew. Because you have constant pain for years, it doesn't really, to me that is...I am not a doctor, that you have CH. CH's usually come in cycles or have triggers.
Do they wake you up in the middle of the night?
Do you ever have pain where you can't sit still?
Again, take the cluster quiz on the left. But go to a Dr. who is familiar with CH's.
Good luck!
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vietvet2tours
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Re: Hi there
« Reply #5 on: Dec 20th, 2006, 9:56am » |
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You have a bad headache not clusters
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cleo0526
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This is directed to: vietvet2tours
I believe I heard enough of your theory and support in your private messages.
For the record, I never said I had clusters. I said I was curious. And frankly, from what vietvet2tours has to say, this is not a board of support.
Clusters or just a 'bad headach'....listen up buddy, a headache that lasts, non-stop for 8 + years, does not a "bad headache" constitute. I suppose I would be more grateful to have clusters, that come and go, as opposed to this constant pain that disrupts every aspect of my life, every minute, of every day.
But thanks again, for the support...NOT.
Good bye and I wish you all well with your head problems. I know it sucks.
cleo
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seasonalboomer
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Re: Hi there
« Reply #7 on: Dec 20th, 2006, 12:46pm » |
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on Dec 19th, 2006, 1:46pm, cleo0526 wrote:But I'd like to get an opinion (NOT a diagnosis) from those of you who probably know a great deal more than me.
Any ideas? Suggestions? Anything?
Thanks, Cleo |
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vv offered the response: "You have a bad headache not clusters"
some people offer their opinions in very brief, but effective, words.......
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| « Last Edit: Dec 20th, 2006, 12:47pm by seasonalboomer » |
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seasonal boomer
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cleo0526
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Okay,
how is it "effective" to tell someone who's been suffering with a severe pain for over 8 years, every single day, that it's just a bad headache?
Hmm,
What if I said you were all babies for complaining about your cluster headaches...at least you get a reprieve and I don't.
I would never say such a thing tho, because I know the agony of having any kind of headache...for any length of time. I DO know what it's like to have your head hurt so bad, that you'd rather blow your brains out with a shot gun than anythign else....
So, no, I wouldn't stoop so low as to tell any one of you that you only had a bad headache.
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vietvet2tours
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Re: Hi there
« Reply #9 on: Dec 20th, 2006, 12:51pm » |
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If someone told me I didn't have clusters it would be the best news I ever got
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cleo0526
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Wow...I knew Montana people are a little dense, but geez...
Uh, lets see, the point was, if I told you that you didn't have clusters, or any kind of pain in your head at all, but you actually do feel a horrible, debilitating pain, how is that effective?
If I told a cancer patient that they didn't have cancer, I don't think it'd go away.
Unless I became God all of a sudden.
TO A MODERATOR: Cancel my account, please. Dear lord, save me from the mindless one liners of a person who simply doesn't get it.
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seasonalboomer
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Re: Hi there
« Reply #11 on: Dec 20th, 2006, 12:57pm » |
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on Dec 20th, 2006, 12:50pm, cleo0526 wrote:| So, no, I wouldn't stoop so low as to tell any one of you that you only had a bad headache. |
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okay then, "you have a really good headache"
the word "good" is used here in the ironic sense. Like, kickin', bitichin' or slammin' in a bad way but using that reverse sense of the ironic.
no one has openly minimized your plight here sweety. when folks come here asking for an opinion, you'll get one. headaches suck. no argument here. not everyone likes to fill the page with loads of additional language. But, I suppose you'd prefer to ignore those that did provide you with greater depth than vv2's concise opinion. also, he never used the word "only" on the thread.
scott
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vietvet2tours
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Re: Hi there
« Reply #12 on: Dec 20th, 2006, 1:00pm » |
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Well like Colonel Jimmy Jones said to me first day in country"Sorry bout yer luck kid"
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cleo0526
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well, let me say, sincerely, that I aplogize for minimizing the opinions of anyone else.
my beef is with VV who I've already had this go around with in PM's that he initiated and I ended.
i really could careless what a bunch of faceless people think of me or my headaches. but i'm the kinda gal who says what I think and I think VV is being a big ass...same as he was in the private messages. I did come for advice...not to be told, when I never said I had a cluster headache, that I have nothing more than a bad or good headache.
but obviosly, i'm not making my point clearly enough. this isn't a pissing contest to see who's in worse pain. it was an endeavor to learn something....
and what I've learned is that I have no use for this board. so, this is my last post and you all have a great life. truly.
And VV, don't leave montana...it suits you.
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vietvet2tours
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Re: Hi there
« Reply #14 on: Dec 20th, 2006, 1:07pm » |
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I won't even defend my IM's.Post em sweety
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JeffB
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Re: Hi there
« Reply #15 on: Dec 20th, 2006, 1:44pm » |
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Wow...I knew Montana people are a little dense, but geez...
Hey now, give my friend more credit than that!!!!!!!!! He's a lot more than a little dense!! 
He's a good man who cares for many people here. He's a bright spot in this forum and has lifted the spirits of not only me but many others. Stick around and do some reading and don't be afraid to ask for opinions or advice.
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LeLimey
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Re: Hi there
« Reply #16 on: Dec 20th, 2006, 2:05pm » |
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Cleo I hope you get to see this. From reading your symptoms it sounds very much to me like it could be a condition called Hemicrania Continua.
There is a med which can be very effective for Hemicrania Continua and luckily its dirt cheap even though its a prescription only drug. Its called Indometacin and it is extremely effective for both Hemicrania Continua and another condition called Paroxysmal Hemicrania. It should start to work within a week and cancel out the vast majority of your headaches. I would certainly give it a go. I'd recommend you speak to your doctor about something to protect your stomach too though as it can be quite corrosive to your tummy and it needs some protection!
Good luck, let us know how you get on
Helen
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JeffB
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Re: Hi there
« Reply #17 on: Dec 20th, 2006, 2:26pm » |
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The Indo was brutal on my stomach but worked quite well the 2 times I was on it.
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" It's been my experience that people who have no vices have very little virtues."
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LeLimey
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Re: Hi there
« Reply #18 on: Dec 20th, 2006, 2:30pm » |
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It is a brute on stomachs as you say Jeff but given how well it can work for some conditions it is well worth a try don't you think?
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JeffB
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Re: Hi there
« Reply #19 on: Dec 20th, 2006, 2:35pm » |
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With out a doubt, me lady! I first tried the indo in the early to mid 90's with the pred and verap. Been on Verap for over two years, helps with my bp too.
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" It's been my experience that people who have no vices have very little virtues."
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chewy
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Quote:
Heres some.
Quote:This site is devoted completely and exclusively to those that suffer from, and to the supporters of those who suffer from Cluster Headaches!
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