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ronrigsby
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Another Newbie
« on: Aug 20th, 2004, 3:53am » |
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Hey All,
I just found this site tonight, and against the advice of the webmaster I am going to post right away. I feel like I found a home when I came across this site. I'm so frustrated with what I'm going through, and you all seem so kind and knowledgeable. I just hope you'll forgive me if I'm in the wrong place.
I don't know that I suffer from CH, but I'm so glad I found this site and hope you can help.
90% of what I experience sounds like CH, but my symptoms don't seem to fit the major diagnosable conditions.
In Oct 2002 I suffered a 6 week bout and my GP suggested it might have been CH. My current episode started 7/5 and has gone on every day since.
My case seems different in a couple areas. First, I don't have multiple, excruciating attacks during the day. Instead they always begin around 1pm and build in intensity until 8pm or so and finally pass (usually) by 12pm. Second, based on what I've been rading from your postings, episodes of CH seem to be more common during the night than the afternoon and evening like I'm seeing.
But the descriptions of the HA experiences on the home page sound so similar to my episodes, I wonder if CH can take different forms? Or maybe they're coming so close together it seems ongoing?
I'm going to see my GP tomorrow, and I'm wondering if anyone can give me some advice on questions to ask or how to go about getting a proper diagnosis.
My heart goes out to each and every one of you. I know the troubles I’m having pale in comparison to the pain you and your loved ones are living with.
Peace to all,
Ron
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pubgirl
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on Aug 20th, 2004, 3:53am, ronrigsby wrote:Hey All,
I just found this site tonight, .....................
I don't know that I suffer from CH, but I'm so glad I found this site and hope you can help.
90% of what I experience sounds like CH, but my symptoms don't seem to fit the major diagnosable conditions.
In Oct 2002 I suffered a 6 week bout and my GP suggested it might have been CH. My current episode started 7/5 and has gone on every day since.
My case seems different in a couple areas. First, I don't have multiple, excruciating attacks during the day. Instead they always begin around 1pm and build in intensity until 8pm or so and finally pass (usually) by 12pm. Second, based on what I've been rading from your postings, episodes of CH seem to be more common during the night than the afternoon and evening like I'm seeing.
I'm going to see my GP tomorrow, and I'm wondering if anyone can give me some advice on questions to ask or how to go about getting a proper diagnosis.
Ron
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Hello Ron
What a lovely first post, and welcome to the site, hope we can help 
Sorry you are suffering so badly. The time your pain lasts as you say does not sound like CH.
There are quite a few conditions where the pain DOES last that long, (have a look at my post to Rudy- roudym, below this one- for some of them and some research links)
The best advice to give is to ask for an immediate referral to a neurologist who specialises in headache conditions as there are over 600 different types and your GP may struggle for a diagnosis.
What is it particularly about your symptoms that does make you feel it may be CH?
Wendy
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| « Last Edit: Aug 20th, 2004, 6:08am by pubgirl » |
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don
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Quote:have a look at my post to Rudy- roudym, below this one- for some of them and some research links)
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Lazy ass Brit.
Post em all again. 
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Prense
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Re: Another Newbie
« Reply #3 on: Aug 20th, 2004, 9:45am » |
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on Aug 20th, 2004, 6:06am, pubgirl wrote:| The time your pain lasts as you say does not sound like CH. |
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I agree! Don't worry though...that would be great news!!!
Chris
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ronrigsby
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Re: Another Newbie
« Reply #4 on: Aug 20th, 2004, 5:29pm » |
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Hi Wendy,
Thanks for your kind reply. It's very comforting to know that there are others out there that know what I'm experiencing.
I saw the doc this morning. I told him about what I was going through, but also gave him a full page, typed description of my symptoms. He read it over, looked me in the eye, and told me I absolutely had CH.
I told him that didn't seem right because of the duration, but he claimed that while my experience is atypical, it is documented. He said the description of the symptoms and tages was a textbook description of CH.
He prescribed Verapamil (240MG) and Indomethacin (50MG). The Indo seems low, but we'll see.
Don--you must have me confused with last night’s other new guy Jockof Hearts. I may be lazy (actually when I posted I was in great pain and it was tough enough to type, let alone do research) but I'm no Brit! 
Chris--thanks for your concern. I was not fishing for this diagnosis, trust me. I'm still not convinced the doc got it right, but I'll try the meds for a couple weeks and see if it helps.
Thanks to all of you for your help,
R
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don
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Not you. Pubgirl.
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Jonny
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Ive seen that writing style before......Hmmmmmmm 
I could be wrong but I doubt it.....LOL
..................................jonny
Second look....I know Im not wrong....LMMFAO!!!!!!
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| « Last Edit: Aug 20th, 2004, 6:04pm by jonny » |
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pubgirl
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Ron
Don may be a poopy head, but I don't think even he would be that rude to a newbie (unless they really asked for it)
He likes being rude to me, makes him feel good on a bad day
Wendy
P.S. Your neuro can look you in the eye and still be wrong! He's giving you the Indomethacin to test his diagnosis, but unfortunately, that's the diagnostic rule out for SHORT lived headaches, not longer ones.
The dose looks awfully low to me too
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| « Last Edit: Aug 20th, 2004, 6:26pm by pubgirl » |
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ronrigsby
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Re: Another Newbie
« Reply #8 on: Aug 20th, 2004, 6:35pm » |
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Gotcha--my bad. Haven't spent much time on message boards before--I misunderstood.
So what's Johnny talking about? 
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pubgirl
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on Aug 20th, 2004, 6:35pm, ronrigsby wrote:Gotcha--my bad. Haven't spent much time on message boards before--I misunderstood.
So what's Johnny talking about? |
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Now THERE'S question. Who knows the secret workings of a King's mind
W
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ronrigsby
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Re: Another Newbie
« Reply #10 on: Aug 20th, 2004, 8:37pm » |
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So here's my question (probably a stupid one, but oh well):
What I have is definitely episodic (whether it's CH or not). This is only my 2nd bout with the first one coming in Oct 2002. I'm a little over 7 weeks into this one so (hopefully) it should be ending soon. By the time the doc sees me again in 30 days it should be over and he'll assume he nailed the diagnosis.
But the script can only be renewed for 1 year. So if I go 18-24 months without another episode, the whole process will repeat and I won't ever get a proper diagnosis right?
I feel pretty dumb posting this question as I know most of you have chronic conditions and you’d trade spots with me at a moment's notice, so please forgive the newby naiveté. Just looking for answers and this community seems to be the best place for that.
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pubgirl
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Hi again Ron
Not a stupid question at all!
That happens to quite a lot of episodics and it happened to me. The week I got to see the neuro, I knew the cycle was over, I could just 'feel' it. My advice (but our system is different so a 'local' should probably answer as well) is that you go to the neuro anyway.
A diagnosis is made from a description of the symptoms, not usually any visible evidence.
The physical exam and any scans etc are usually to rule out other neurological problems or conditions, not to make the diagnosis, but it is a good idea to have all this done to be on the safe side anyway.
You will then be set fair with a confirmed neuro diagsnosis if ever the problem reoccurs (God forbid and hope it doesn't)
Wendy
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| « Last Edit: Aug 21st, 2004, 4:07am by pubgirl » |
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Charlie
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Re: Another Newbie
« Reply #12 on: Aug 21st, 2004, 4:21am » |
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Sorry you have to deal with such pain and maybe this horror. Clusters will wake you out of a sound sleep. If that's the case, you almost certainly have CH.
Stick around, look us over and let us know how you're doing.
Charlie
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pubgirl
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Me again Ron
Just a clarification question.
Are you constantly in pain during these 11 hours?
Wendy
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judyw
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Re: Another Newbie
« Reply #14 on: Aug 21st, 2004, 7:57am » |
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Hi Ron, Welcome and about all I can add is support for the rule out visit to the Neuro to make sure nothing else is going wrong in the head...for each of us there can be variations of how CH presents itself...I have had these headaches for about 57 years and I can vouch for many different types of showing...CH definitely has a personality of its own...I have found the learning and sharing has been the best medicine of all...and, that each of us has our own way of dealing with it...so let us hear how things go with you and know that you are not alone...PPP
judyw
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