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Lemonface
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Hi there ... this is my first post but I have been reading much of this site for the last two days.
I know this is going to sound like a naive question but here goes ... how many headaches/how long does one generally have to suffer before a diagnosis of CH can actually officially be made?
I see how long and how horribly most of you have suffered. Here is my story in as brief a nutshell as I can make it ...
I have only (blessedly) had two headaches along these lines, one this past Sunday and one this past Tuesday. They came at the exact same time and struck identically. They both met virtually every criteria that is listed as to description of the pain, from the onslaught (talk about zero to 60!) to the intensity to the watering eye and icy nose, to the feeling of being restless to the point of thrashing just to get it out of me, etc.
I am a woman in my 40s with a history of migraines, though not to the extent that many suffer from them -- generally 4-6 a year, I would say in the range of about 5-7 on a pain scale. This was no migraine, and I knew that from the first five minutes. OK, the first two minutes. And they scared the crap out of me. I was really afraid I might be having an aneurysm or something. And both were damn close to a 9 on my pain scale (I save 10 for my punctured third degree burn on my ankle, eye surgery gone wrong, and maybe childbirth)
Anyway, I went to the "book" and as soon as I read what it had to say about CH the light went on, because I couldn't have written a better description of what I'd gone through. However, do two such headaches mean CH??? I don't want to call my doctor and sound like an alarmist ... but OTOH I am now living in fear of this happening again. I don't need to tell anyone reading this how nearly unbearable it was.
I should add that about a year ago I was diagnosed with carotidynia on that same side and wonder if there could be any connection? That lasted about a month and I have been symptom-free since then. But since one of the medical reports on here talked about the carotid artery being potentially tied into CH I wondered if there might be a connection.
Some nutshell, huh? 
Anyway, thanks for any advice ... and sorry to sound like a whiny baby after just two headaches.
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Mikey
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Re: Stupid question from a newbie
« Reply #1 on: Dec 19th, 2003, 2:52pm » |
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Welcome to the site Lemon. AS far as how long it takes to get a diagnosis, it has taken some of us many years to get a currect diagnosis. Many ladies who have CH, have compaired the pain to being worse than childbirth, i guess they are saying a KIP ten is worse. As far as just having the two headaches, it's possible for a Neuro to come to the diagnosis of CH from just the two, but unlikely. They ussually watch a HA for a while before they make a firm diagnosis. That's been the case with most of us anyway.
Believe me, if you have CH, you will be calling your Doctor or somebody, because the pain is more than most of us can stand at times, but we have to.
Cluster headaches are the worst headaches known to man, and any Doctor that knows anything about them will tell you that. My very first CH sent me to the hospital, i thought i was dying, just like yourself, i thought i was having a stroke or an aneurism.
It took me two years to get a proper diagnosis, and some others here have taken decades to get a proper diagnosis.
My best advice to you is to read as much as you can, by pushing the buttons to the left, and asking as many questions as you like. The thing is to get yourself educated, and to get an educated Neuro (if possible where you live) in cluster headaches. If you can't find one that is very educated in them, then print out pages from here as info to take with you to your Neuro visit.
Hope this helps ya, and i HOPE that it turns out that you don't have CH!!!!!!
Mikey, 
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Tiannia
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Re: Stupid question from a newbie
« Reply #2 on: Dec 19th, 2003, 3:07pm » |
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Lemon, welcome and sorry that you had to find us. I understand about thinking that you where crazy, scared that they would hit againa nd semi afraid to call your doc cause you did not want to sound like a nut job. I think I still sound like a nut job, I still argue with my doc and I really dont care. When I am getting hit I dont care what they call it as long as we can figure out a way to make it stop.
So call your doc. Talk to him. Keep a journal about when the hit the time, the feeling the pain level everything. The shadows... swelling, anything that comes to mind. This will help. It is tedious but it will help.
Ask any questions you want. The worse you will get is. "You are really stretching for that one" type comments.    
Tiannia
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Tara Ann
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Re: Stupid question from a newbie
« Reply #3 on: Dec 19th, 2003, 3:10pm » |
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Hi Lemon, sorry to hear bout your pain. Mikey pretty much said it all. I just wanted to add that NO question is stupid IMO, so ask anything you need to ask, and make an appt with your doc.
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ave
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Re: Stupid question from a newbie
« Reply #4 on: Dec 19th, 2003, 3:58pm » |
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Don't ask how long you have to have these headaches or how bad they have to be BEFORE you get the right diagnosis.
Better ask, how long before doctors will have enough knowledge to make an intelligent diagnosis...
Oh dear, that long?
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172Driver
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Re: Stupid question from a newbie
« Reply #5 on: Dec 19th, 2003, 3:59pm » |
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Hey Lemon,
It would be hard for anyone to come to any firm conclusions after 2 headaches but you are kicking ass in terms of handling the situation. It is very important to get tested though. Try and find a Dr. (neuro) that specializes in headaches. They know what they are looking for instead of some ER doc that hasn't heard of CH since med school and then only as some bizarre footnote in the Headaches chapter of the book.
Hang in there. You are ahead of the game so far!
Greg
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Charlie
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Re: Stupid question from a newbie
« Reply #6 on: Dec 19th, 2003, 4:01pm » |
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Welcome to the madhouse.
The pain you describe sounds typical. They will wake you out of a sound sleep too. Isn't that special? 
Mine began with one or two over a few weeks and then went to several a day (4-6.....usually 4) and went away for months until the next cycle. I thought I was having a stroke or had a tumor. I was already seeing a neurologist so I had an advantage. Normally you have to pound doctors over the head until they admit you actually might know what you have......not always though.
I suggest sticking around and telling us more. Let us know how you make out with your doctors.
Charlie
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cathy
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Re: Stupid question from a newbie
« Reply #7 on: Dec 19th, 2003, 4:29pm » |
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on Dec 19th, 2003, 2:27pm, Lemonface wrote: And both were damn close to a 9 on my pain scale
(I save 10 for my punctured third degree burn on my ankle, eye surgery gone wrong, and maybe childbirth)
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Welcome to the board, I hope it's not CH but if it turns out to be then I hate to tell you this, but your punctured third degree burn, eye surgery and childbirth will seem like a walk in the park!
Cathy
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Prense
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Re: Stupid question from a newbie
« Reply #8 on: Dec 19th, 2003, 7:33pm » |
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It's been discussed here several times..."the worst headache in your life?" Get it checked out! It could be something very serious. Beyond that, if it is CH, you will get more attacks...sooner than later. It shouldn't take you long to document a trend well enough for a proper diagnosis.
Hoping it isn't CH...
Chris
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TxBasslady
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Re: Stupid question from a newbie
« Reply #9 on: Dec 20th, 2003, 2:06am » |
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Welcome to the board, Lemon.
Lots of good info here and the best support anywhere.
Hope you find what you need. Keep posting and let us know what's going on 
Pf vibes,
Jean
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Callico
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Re: Stupid question from a newbie
« Reply #10 on: Dec 20th, 2003, 2:13am » |
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If you think that was a stupid question, then you haven't read the archives yet! 
I'm with the others above. Get it checked out promptly and thouroughly ASAP. The only way most are diagnosed withCH is when everything else is ruled out.
Hoping you have something else, but welcoming you to this madhouse anyway.
Jerry
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ClusterChuck
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Re: Stupid question from a newbie
« Reply #11 on: Dec 20th, 2003, 2:16am » |
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Hi, Lemon! Welcome aboard!
It is critical that you see a doctor about your "new" headache! You may have a tumor or something else! Cluster headaches do not kill you, but other things can. You need to get a CAT scan and MRI to rule out anything else. The CAT scan and MRI do not prove you have CH, but it proves that something else is NOT causing this pain. Please get it checked out!
As Mikey said, my first CH caused my wife to call an ambulance and send me to the hospital. When I got to the emergency room, they freaked out and had me life flighted (my only helicopter ride, and I was too far out of it to remember it! DAMN!!) to the regional teaching hospital.
on Dec 19th, 2003, 2:27pm, Lemonface wrote:| I save 10 for my punctured third degree burn on my ankle, eye surgery gone wrong, and maybe childbirth |
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As Cathy said (darn, I can't believe I am agreeing with that Brit bimbo! heehee!) once you have a CH KIP10, you will think those others were minor discomforts!
Again, welcome aboard, but PLEASE get it checked out!
Chuck
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Mac
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Re: Stupid question from a newbie
« Reply #12 on: Dec 20th, 2003, 4:16am » |
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There is no such thing as a stupid question regarding what might be a cluster.We all have questions that are unanswered.
For me it took three and a half years and six or seven docs to finally be diagnosed as a chronic clusterer. I'm one of the lucky ones. Get checked out by a neuro and keep a close watch on when (if) you get any more.It's called cluster because you get several in a short period.If it turns out that you are this is the place to be for lots of support. If your not a clusterhead thank your lucky stars.
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Lemonface
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Re: Stupid question from a newbie
« Reply #13 on: Dec 20th, 2003, 9:33am » |
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Thanks, everyone! I really appreciate the responses and hugely admire the support system you all have built up with each other, about your CHs and pain and also the rest of your lives! We should all be so lucky so have such a group of friends as the one here ...
So far so good on not having had anymore headaches since Tuesday and I figure that's a good sign. I did make notes about the two I had and am going to keep that list handy in case I have to add to it. One more and the next call on my list is to my doctor (who, by the way, is really open minded and looks at all possibilities -- he's not the type to poo-poo anything, which I 've heard a lot of doctors do).
We like to joke, whenever there is something weirdly wrong with me, that it must be from my Lyme (four years ago) ... I assume there is no history of association of CHs coming out of a patient with a history of Lyme?
BTW, I did have a brain MRI a little over a year ago ... it was clear except for one thick hazy spot -- but that's the spot where I've had four concussions (three at the time, one more back in November), so we assumed that was what it was from. My doctor still has the films ... would there be something you'd look for specifically for CHs for are MRIs simply to rule out other possibilities?
My mom died of a brain tumor so I'm pretty aware of the symptoms, both early and late (she had it for probably 10 years without it being diagnosed ... I guesstimate this because she had a CAT scan after significant symptoms and they misread it, so she didn't have another one until seven years after that! At which point you can imagine it was pretty much inoperable even though slow-growing).
Anyway, I also hope I don't end up hanging out here, though if I do I couldn't ask for a more knowledgable and supportive group of sufferers. Am hoping it was just weird and horrible and temporary (and yeah, I would say they were the worst two headaches of my life but so much shorter than my migraines ... also, though this probably doesn't go by the book, in both cases I took a codeine-based painkiller out of desperation -- I have a herniated disk and keep them on hand in case of emergency -- and that definitely helped temper it after about 15 minutes ... BUT I would never want to have to resort to that a few times a week)
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mikeyd
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Re: Stupid question from a newbie
« Reply #14 on: Dec 20th, 2003, 11:51am » |
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heh heh, tylenol does not temper these monsters. Neither does opiods like morphene. I hope you don't have CH, but if U do, welcome to the club. Oxygen is the best weapon against these ones so if you are dying from a CH(or think you are), head for an oxygen mask and that should help. It works for many of us here.
Happy holidays and good luck!
Mikeyd
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Re: Stupid question from a newbie
« Reply #15 on: Dec 20th, 2003, 12:48pm » |
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HI there.... Lemon head... 5 easy steps ... first of all no questions are stupid here.......... Second welcome... sounds like you may be starting your first cluster cycle... third...keep track it is the best way to figure it out and im sure someone else said it but did you take the quiz on the left...fourth... Find a good Neuro one that might take into consideration that you could have Clusters... fifth...pray that you don't... Peace ree
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Re: Stupid question from a newbie
« Reply #16 on: Dec 20th, 2003, 1:50pm » |
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on Dec 19th, 2003, 2:52pm, Mikey wrote:Welcome to the site Lemon. AS far as how long it takes to get a diagnosis, it has taken some of us many years to get a currect diagnosis. Many ladies who have CH, have compaired the pain to being worse than childbirth, i guess they are saying a KIP ten is worse. As far as just having the two headaches, it's possible for a Neuro to come to the diagnosis of CH from just the two, but unlikely. They ussually watch a HA for a while before they make a firm diagnosis. That's been the case with most of us anyway.
Believe me, if you have CH, you will be calling your Doctor or somebody, because the pain is more than most of us can stand at times, but we have to.
Cluster headaches are the worst headaches known to man, and any Doctor that knows anything about them will tell you that. My very first CH sent me to the hospital, i thought i was dying, just like yourself, i thought i was having a stroke or an aneurism.
It took me two years to get a proper diagnosis, and some others here have taken decades to get a proper diagnosis.
My best advice to you is to read as much as you can, by pushing the buttons to the left, and asking as many questions as you like. The thing is to get yourself educated, and to get an educated Neuro (if possible where you live) in cluster headaches. If you can't find one that is very educated in them, then print out pages from here as info to take with you to your Neuro visit.
Hope this helps ya, and i HOPE that it turns out that you don't have CH!!!!!!
Mikey, |
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Damn Mikey, Concise and to the point bro. I couldnt have said it better myself!
Patrick
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Belle
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Re: Stupid question from a newbie
« Reply #17 on: Dec 20th, 2003, 5:38pm » |
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Id have to agree with ya too Cathy. I've had two kids and Id go through labour all the time if it meant it would kick these chs. Hope you can get some mental and physical relief Lemon.
Belle
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Re: Stupid question from a newbie
« Reply #18 on: Dec 20th, 2003, 8:06pm » |
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on Dec 20th, 2003, 9:33am, Lemonface wrote:| BTW, I did have a brain MRI a little over a year ago ... |
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I would suggest another MRI because of the development of your "new" headpain attacks.
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Lori
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Re: Stupid question from a newbie
« Reply #19 on: Dec 21st, 2003, 1:06am » |
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Well, everyone else gave great advice so not much to add except..you need to get to a doc to rule out anything else serious such as tumors, etc. Especially since your mom had one and you had a fuzzy spot a year ago on your mri. Not trying to scare you, but be sure you do this for your own safety! If it turns out to be CH, you are surely in the right place. Please let us know what you find out from the doctor appt.
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