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muzza
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A newcomer bringing hope
« on: Jul 18th, 2005, 1:48am » |
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Hi, I am a new visitor to this site hoping to provide a bit of heartening news for CH sufferers.
I am 48 years old, male and have suffered CHs since about age 30. After my initial attack in 1987, I visited a neurologist who, after an EEG, prescribed Digesic for pain relief and advised not to drink alcohol for at least two weeks after last headache. Forget the Digesic but the advice on alcohol has stood the test of time!
Since then, I have suffered episodes approx every two years for about two to three weeks, generally around autumn (fall). Probably only ten cycles in eighteen years. Severe headaches most nights, pain level 7 to 9 (never a 10 thankfully), with mild to moderate headaches during daylight hours. I have not until my most recent attack been dilligent in recording details of the cycle as I have known so little about CH that I hoped after each cycle that they would not come back and felt that I could withstand the pain as it was relatively short in duration compared to migraine which I used to suffer as a child and young adult.
However, my latest cycle was quite different to any I had experienced previously. Firstly, the duration was double what I had expected, almost six weeks. Secondly, the more severe headaches occurred just before waking rather than just after going to sleep. Thirdly, the more severe headaches rated only about a 6 to 8 on the pain scale. Fourthly, I had about one severe headache a week rather than daily. Fifthly, during the day despite a persitent shadow, I had no headaches that would have rated above a 5 and generally less than one per day.
Despite the cycle lasting six weeks, I felt I had got off quite lightly compared to previous experiences. It was as though The Beast had lost some impact and might have been running out of steam.
During the cycle, I avoided alcohol and used Imigran (Imitrex) nasal spray only three times. I found with the Imigran, that I got good relief within about ten minutes, but twice, an hour after use, the headache returned for a brief fling before departing of its own accord.
My feeling, which is why I was moved to post this message, was that either I was hopefully "growing out" of the CH syndrome or I was let of the hook by The Beast for whatever reason. I thought it might provide a glimmer of hope for others as I am optimistic that should there be a next time, like the last, I could cope much better with the level of discomfort.
Is a mild cycle a common occurrence after years of short but excrutiating episodes? Does anyone outlast The Beast?
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Muzza
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BobG
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Re: A newcomer bringing hope
« Reply #1 on: Jul 18th, 2005, 3:12am » |
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Welcome to the board muzza. We're getting quite a few people here from your part of the world.
It is not uncommon at all for the clusters to change over time. Let's hope yours stay low on the scale until the day they never come back.
Does anyone outlast The Beast? I have no idea. Ask again in 30 years.
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burnt-toast
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Re: A newcomer bringing hope
« Reply #2 on: Jul 18th, 2005, 6:20am » |
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Thanks for the info. - haven't found research that focuses on fluctuations in the frequency or severity of CH during cycles.
My personal experiences are that frequency of attacks and their severity change constantly. My condition has been chronic and from what I have experienced - the nature of symptoms can change weekly, monthly, seasonally or not a all for long periods of time. Seems this nightmare likes to mix things up a bit.
I also believe there have been a number of posts that reference "having a mild cycle" so I don't think this is too unusual for eposidic suffers either.
Sometimes its like contantly digging a trench that keeps falling in on itself, but Outlasting "The Beast" has become an personal obsession.
Here's to the hope that everyone's due for a permanent remission.
Tom
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AussieBrian
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Re: A newcomer bringing hope
« Reply #3 on: Jul 18th, 2005, 6:56am » |
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G'day Muzza, and welcome aboard, though I can think of plenty of other places I'd rather have met you.
I suppose you've already worked out that this is a bit of a mad-house and the mob can get unruly at times, but it's also the place to get heaps of info, help and support - if that's what you want.
And you've already used that word we hold so dear - hope.
There's a few other Aussies about, too, and a couple of bods from over the ditch only too willing to pitch in. You'll meet us all in due course.
In the meantime stay in touch, and PM me anytime.
Cheers and beers,
Brian up north.
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paul_pero
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Re: A newcomer bringing hope
« Reply #4 on: Jul 18th, 2005, 7:08am » |
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G'day Muzza,
glad you found the site. Hope you can outlast the beast, the neuro I saw last week said that sometimes the clusters don't come back, so lets live in hope.
As far as my clusters go, I have had no mild cycle. They do however vary in the number of HA's per night and time at which they hit.
There seems to quite a few of us in Aust sadly.
Paul
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BobG
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Re: A newcomer bringing hope
« Reply #5 on: Jul 18th, 2005, 8:01am » |
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on Jul 18th, 2005, 6:20am, burnt-toast wrote: My condition has been chronic
I also believe there have been a number of posts that reference "having a mild cycle" so I don't think this is too unusual for eposidic suffers either.
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Are you referring to the severity of the pain when you say chronic? Chronic, as used here, refers to a length of time and not severity of pain. Chronic is having headaches for one year with out any break of 30 days.
"having a mild cycle" ..............yes that happens. I haven't had a "real" cycle in about 6 years. But, each year I have had cycles (clusters) of shadows, kip 1-3 with an occasional 5 or 6, every day and the cycle lasts 4-6 weeks. These shadows last about 15 to 20 minutes and happen 2 or 3 times a day. This is my second week of shadows now.
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burnt-toast
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Re: A newcomer bringing hope
« Reply #6 on: Jul 18th, 2005, 10:37am » |
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on Jul 18th, 2005, 8:01am, BobG wrote:
Are you referring to the severity of the pain when you say chronic? Chronic, as used here, refers to a length of time and not severity of pain. Chronic is having headaches for one year with out any break of 30 days.
"having a mild cycle" ..............yes that happens. I haven't had a "real" cycle in about 6 years. But, each year I have had cycles (clusters) of shadows, kip 1-3 with an occasional 5 or 6, every day and the cycle lasts 4-6 weeks. These shadows last about 15 to 20 minutes and happen 2 or 3 times a day. This is my second week of shadows now. |
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I was referring to length of time - just passing the 3 year mark on this (if you could call it) cycle. My point was - severity during this cycle has fluctuated all over the place. Even though the CH (condition) has been constant the number of attacks per day/severity of pain (symptoms) have frequently fluctuated.
Tom
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Sandy_C
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Re: A newcomer bringing hope
« Reply #7 on: Jul 18th, 2005, 8:19pm » |
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Hi Muzza, sorry to have to meet you here, but here is the best place you could be. Sorry that you are suffering. I am episodic. After the first cycle ended, I was two years complately PF. After second, 1.5 years,. I'm now down to 1 year between cycles. Each cycle has lasted from 6 to 9 weeks. I'll take as much PF as allowed, but worry as to whether this will continue until I go chronic.
All I can say is this site is the only thing, besides my supporter husband, that keeps me sane. Stay with us.
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Barry_T_Coles
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Re: A newcomer bringing hope
« Reply #8 on: Jul 19th, 2005, 1:35am » |
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Hi Muzza
Like Brian says meeting any other way would be so much better but glad you found the site.
Read as much as you can here it's well worth the time, these people have an absolute wealth of knowledge and support.
The more you read the more you will understand whats going on and you come to terms with the beast a lot better, it's done wonders for my mental state ( some would question that I would suggest ).
I only found the site around christmas just gone, this is my second hit and I wish I had found this place before.
All the best for now and keep in touch.
Kind Regards
Barry
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muzza
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Re: A newcomer bringing hope
« Reply #9 on: Jul 20th, 2005, 12:48am » |
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Thanks for the replies.
I see my "mild cycle" as the first significant change in episode over 18 years and something potentially positive and will hang my hat on anything to keep up hope that CH is not an affliction that lasts the rest of my life.
Best of luck and PFDs to you all.
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Muzza
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marlinsfan
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Re: A newcomer bringing hope
« Reply #10 on: Jul 24th, 2005, 6:16pm » |
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Hi Muzza,
23 years of yearly episodes. This one was my first in 3 years..... I'm in week 12, before I normally lasted 6-8 weeks, I think. This episode has been my longest, and with most severe attacks.
I've been around here about a month and a half and have not seen anyone outgrowing the beast. In fact, I've seen a few episodics turning chronic.
Glad to hear your current episode is not as hard. Hope it stays that way until it leaves!
PF wishes.
Jose
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