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AussieBrian
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Epi-chronic vs Chroni-sodic
« on: Sep 19th, 2007, 9:14pm » |
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I bring this up solely in the interests of those who never get a break from this madness. During my career as a CHead I've regularly gone 12-18 months with little more than the occasional day off, yet have never considered myself chronic.
These have always been individual cycles (clusters) back to back with the occasional 'mini-cycle' thrown in purely for my further enjoyment.
Now, all episodics know that what worked last time may or may not work this go round and what's been a spectacular failure in the past may now turn out to be the magic bullet. My concern is that our chronic sufferers may simply be not recognising individual cycles as such and be stuck in a medication rut, not realizing the beast has transmogrified yet again and must be attacked from a different angle.
This would also account for the many posts we see, "I fear I'm going chronic", and the input of former chronic sufferers may also shed some light.
What think you?
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Charlotte
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Re: Epi-chronic vs Chroni-sodic
« Reply #1 on: Sep 19th, 2007, 9:20pm » |
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I think you are right. Mine also seem like individual cycles of different intensities, one after another. I do varry my approach from day to day, hour to hour. When something works, I use it for a base, like right now I take 80mg verapamil 4 times a day, and varry the kudzu, maxalt melt, red bull, wormwood, and whatever else I have in my arsenal at the time. My goal is to use as little as possible, and be as functional as possible.
Charlotte
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George_J
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Re: Epi-chronic vs Chroni-sodic
« Reply #2 on: Sep 19th, 2007, 9:53pm » |
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Thought-provoking question, Brian.
I've never been even remotely chronic--always episodic, with slowly increasing remission times in between. But I've often wondered whether the condition actually exists all the time, and manifests in full episodic bloom only some of the time.
Here's what I mean: Even when I'm out of cycle, I'll go through periods of time when certain recognizable clusterish things happen, but a cycle of attacks does not occur. I'll have a stiff neck for a month, or the Horner's will be more pronounced for a while, or I'll start waking several times a night during REM sleep, without a CH attack. I've noticed this more now that my cycles are less frequent--I tend to get secondary symptoms during my old cluster cycle periods, even if an actual cycle does not develop.
It makes me wonder whether, fundamentally, all of us, episodic and chronic, are more or less the same? Is the difference where the baseline lies?
Picture a string of volcanic mountains--if they exist on a continent, they appear as a series of peaks and valleys with a lot of rough country in between. If they exist on the seabed, they appear as a series of islands, with only the level of the sea as the baseline.
Maybe in chronics, the baseline of "remission" lies at a higher point--still clinically visible. In episodics, perhaps the baseline of "remission" exists subclinically--below the level where we can see it.
Purely speculation.
Best wishes,
George
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seasonalboomer
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Re: Epi-chronic vs Chroni-sodic
« Reply #3 on: Sep 19th, 2007, 10:06pm » |
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how about crapisonic?
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BarbaraD
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Re: Epi-chronic vs Chroni-sodic
« Reply #4 on: Sep 20th, 2007, 7:49am » |
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It's been described here by chronics as "high cycles" and "low cycles", but I don't think I've been entirely PF since 97 (most of the time I consider a day with shadows a PF day).
I've been on topamax since 99 and it's put me in what I call "remission" - that is mostly just shadows with a full blown hit (or hits) coming sporatically (without notice or invitation). When these start coming every day (or several times a day, I go on cafergot and then DHE to break the "high cycle" and hopefully it works and I'm back to a "low cycle" again.
I don't let the CH get in the way of living, but there's not a day that goes by that Mr. Demon doesn't let me know he's around and can pop his ugly head any time he pleases. I don't leave home without my meds (he can go from 0-10 without any warning) and I keep my 02 handy at home and a can of Red Bull cold and on the alert.
But the one thing I've done (that a lot of posters here haven't yet) is I've learned NOT to be ashamed of this condition and NOT to apologize when I get hit. I can't help it (rather not have it but I'm just one of the chosen few who do) and I'll be damned if I'm gonna go hide or cower in the corner cause I do. Others can just learn to accept it or go away (or be very very afraid as the case may be).
So I guess I'm Epi-chronic. Maybe you've invented a new name for us...
Hugs BD
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Ctech
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Re: Epi-chronic vs Chroni-sodic
« Reply #5 on: Sep 20th, 2007, 1:52pm » |
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As for me, I am not ashamed that I have CH, but I do try to “hide” when I get hit and it’s because I get tired of having to explain to people about my problem – I mean how many times do I have to hear from people “have you had you’re eyes checked” or “maybe it’s high blood pressure” and then when I explain that it’s not caused from that they say “maybe it’s allergy’s 
And even worse, I have had someone start talking to many during a hit after I have already explained CH to them and they keep talking to me as if I just have some sort of minor pain or something  !
No thanks –I will just keep “hiding in the bathroom stall at work with a cold wet paper rag stuck to the side of my head and ride it out! That makes me feel better than explaining in detail my condition over & over again to some idiot that could care less about what I'm going through.
-Chris
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headbanger45
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Re: Epi-chronic vs Chroni-sodic
« Reply #6 on: Sep 20th, 2007, 3:23pm » |
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Ctech is right on with the keeping CH to yourself gig..My eyes get real cr@ppy looking when I'm in full swing and visine does not help. I think some freinds suspect me being on the hard stuff, but the answer is I am on drugs, but not any good drugs. If pain killers helped with a CH, we would all be junkies. If you went into the whole long story about CH, the person would show real kindness until you walked away and then it would be; wow, that dude is really F'ed up. So, just go chill in peace and if anybody asks, tell them you just shot up some of the best "brown stag" ever..... what jealous......let them worry about your intervention - ha ..keeps e'm occupied..
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Ctech
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Re: Epi-chronic vs Chroni-sodic
« Reply #7 on: Sep 20th, 2007, 3:58pm » |
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 I would use that one but then everyone would just try to talk me out of my stash 
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DennisM1045
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Re: Epi-chronic vs Chroni-sodic
« Reply #8 on: Sep 20th, 2007, 4:30pm » |
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on Sep 20th, 2007, 7:49am, BarbaraD wrote:| But the one thing I've done (that a lot of posters here haven't yet) is I've learned NOT to be ashamed of this condition and NOT to apologize when I get hit. I can't help it (rather not have it but I'm just one of the chosen few who do) and I'll be damned if I'm gonna go hide or cower in the corner cause I do. Others can just learn to accept it or go away (or be very very afraid as the case may be). |
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Wow Barb, that was a bit judgemental wasn't it? I don't hide my CH from my family. However I suffer mostly alone because I don't want to be bothered. Hell, my little ones come in the bedroom and hold the O2 hose for me. My wife can't really help me other than bringing an occasional ice bag and she's got her hands full with the kids anyway.
At work I do hide my CH. The only people who know are my boss, the project lead that is running the project I'm assigned to and the folks in HR. They keep my C-tanks for me. I go to an isolated office to huff my O2 because a) I don't want people to bother me and b) because new there and want my work to speak for itself instead of just being known as the O2 guy. Over time that'll change. But not yet. Let me get through my first project and show em what I can do. Then they won't care.
I hide my CH from coworkers like I hid my Diverticulitus. A lot of people thought I was on vacation when I was out for a bowel resection. I guess it's just the way I'm wired. I suffer alone because I choose to.
So, like most things releated to CH, what works for some doesn't work for everyone. You might want to keep that in mind.
-Dennis-
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southwalessunshine
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Re: Epi-chronic vs Chroni-sodic
« Reply #9 on: Sep 20th, 2007, 4:32pm » |
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Any theory is worth discussing but in my case your theory doesn't fit. I've been a Cher for over 14 yrs and misdiagnosed right up until May this year. I wasn't on any meds for about 10 of the 14 yrs i have suffered with these headaches. Now I know more about the condition I regularly take red Bull and caffeine tablets, 02, diclofenac, sumatriptan tablets and imigran injections. i'm also on a pred taper at the moment. None of these drugs have changed my cycle. it's still exactly the same as it is always was, but the drugs abort the Ch.
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BarbaraD
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Re: Epi-chronic vs Chroni-sodic
« Reply #10 on: Sep 20th, 2007, 7:47pm » |
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Maybe I worded that a little wrong (I often do), but what I meant is - if I get hit in public, I grab my meds and just sit there until the pain subsides - I WARN people NOT to touch me and if they're smart they won't cause I have been know to backhand anyone who does. After the pain subsides I go back to what I was doing and don't explain anything. If they start giving advice, I just look at them with a look only a Granny can give.... 
On planes (when I was on trex) I just shot up and the hell with what anyone thought (I wasn't going to see them again anyhow). But that's just me.
My grandson knows when Granny starts pulling on her ear to run for the 02 - he starts yelling, "Breathe Granny Breath!" and doesn't touch me until I tell him it's alright, but he's been with me since he was born and knows when Granny's having a headache you just don't touch. After it goes away she needs lots of hugs.
In the office, my clients were told that I suffered from CH and (if able) I'd usually go to the Kitchen when I got hit, but if I couldn't make it, I'd sit at my desk until the meds took effect. Sometimes my assistant would get around to closing the door, but if not.... so be it. She would warn people to stay away from me. I do get violent if anyone touches me (can't help it - it's reflex).
I've been hit in some strange places (in the middle of O'Hare airport was one of the most fun) and I've acted up pretty bad in a lot of them, (a few I've apologized for acting up as bad as I did, but the people should have listened to what I was yelling at them!  ) but I'm just getting to old to care what anyone thinks any more so I guess that's what I was saying.
But I have learned that all those "well meaning" people can be ignored. I just laugh about them anymore. I quit trying to explain to them years ago. Even an IRS auditor tried to tell me what to do (I was at about an 8 at the time and she told me all I had to do was soak my feet in hot water - that's what her son did! - and this advice was given while I was trying as polite as I could to get the damn audit put off till another time when I was rational.). I ended up throwing a file at the witch, went back to the office, wrote MY report to the IRS and a nice Senator and got the witch-woman FIRED and a new audit. Well, maybe some people can't be ignored.
But I was NOT trying to be judgmental about anything. Everyone needs to come to grips with CH in his/her own time and in his/her own way. Sorry if I came across that way. I'm OLD - ya have to overlook me sometimes.
Hugs BD
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DennisM1045
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Re: Epi-chronic vs Chroni-sodic
« Reply #11 on: Sep 20th, 2007, 9:00pm » |
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Thanks for the explanation Barb. Sorry for reading you wrong. It's all good here. 
Oh, that's right, you don't care do ya 
-Dennis-
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E-Double
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Re: Epi-chronic vs Chroni-sodic
« Reply #12 on: Sep 20th, 2007, 9:42pm » |
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I don't know dude....
Clear cut short cycles from 94-2004. relatively brief meaning approximately 4-6 weeks maybe shorter.
2004 I actually got diagnosed during the beginning of a peak cycle whihc was completely different than anything i had ever experienced up until that point.
My cycle never broke, however I had periods of lesser activity and 2 seperate occasions where i went almost PF for over a week.
If we go by the criteria then /i was still chronic.
Since I was hospitalized in July I have been doing quite well.
I have only had 7 major attacks. To me this means the full blown near agonizing almost unabortable floggings.
I shadow often so I know it is still there but again since I do not meet criteria for having an end to cycle I guess I am still chronic albeit a comfortable medfree chronic.
Who knows....
If one has 30 day cycles followed by 30 days of consecutive pf days only to repeat this pattern than they are considered episodic even though they are cycling 6 times per year with each cycle interupted by a PF break.
This is considered "episodic" the same way one who has them in just the spring and fall.
If one has a cycle of 11 consecutive months followed by 1 month PF they are still considered episodic.
I don't really get it either!!!
I just live 
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Re: Epi-chronic vs Chroni-sodic
« Reply #13 on: Sep 20th, 2007, 11:01pm » |
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I had pretty regular cycles until somewhere around 2000. I consider October of 2000 as when I became officially 'chronic', since the attacks are daily ever since ...unless I use DHE, steroids, or histamine to prevent.
I just wanted to add that I do 'hide' when having a full blown attack because (1) I don't want to be bothered, (2) I don't want others to see since there's nothing they can do to help, and (3) I'm tired of explaining the situation to others (who still wouldn't understand even after I explain). It's just alot easier on me if I hide. When I'm not having an attack, I don't mind talking about it or trying to explain it to those who don't know what it is.
I'm not ashamed of having CH, like I said, it's just easier on me if I keep some of it private.
And good post Brian. (Cheers to ya) Remind us all from time to time that just because it didn't help before doesn't mean it wont help now and vise versa.
PF Wishes All
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Re: Epi-chronic vs Chroni-sodic
« Reply #14 on: Sep 27th, 2007, 11:54pm » |
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I have never had clearly defined cycles, but now that I understand CH better, I have quite a few questions.
I am an epileptic. I had my first unexplained bout of headaches in 1996 after my last big seizure. Then in September of 2001, I had my next bout of CH episodes. Now I have htem again as of 2 weeks ago.
I have been on Tegretol(carbamazepine), for about 23 or 25 years. Tegretol is a Calcium-channel blocker. Since most of the Migraine/CH drugs appear to be CC blockers, I'm starting to wonder if the Tegretol has been blocking much of my symptoms for all of these years.
I often sweat unnecessarily. I have lots of general headaches and shoulder pain/stiffness in the neck. Sinus congestion is just part of being me. I notice that I don't normally ever have a droopy eye, but jaw pain along with my regular headaches is pretty normal, too, as well as pain along the crest of the skull where I have quote a bit of muscle(the better to hurt in the middle of an attack!)
I'm not sure anyone will be able to answer that for me, but I also can't fully say whether I'm chronic or episodic at this point. The topic just was pretty thought-provoking for me.
Sam
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Re: Epi-chronic vs Chroni-sodic
« Reply #15 on: Sep 28th, 2007, 12:59am » |
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I have noticed that I have a 3 month spring and fall cycles but also have random hits throughout the year, I don't know where I would fit in. I don't believe that I have had a full 30 days without a hit yet I may go two or three weeks, get one hit out of the blue, then go another 3 weeks without one. I call them my reminders to enjoy the PF times.
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SouthBronxSupreme
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Re: Epi-chronic vs Chroni-sodic
« Reply #16 on: Oct 4th, 2007, 3:44pm » |
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I cant even imagine having that much pain years on end - I seriously know I wouldnt allow myself to take my own life But damn - I wouldnt even know how to survive, imagine being homeless with clusters, has anyone famous ever head CH?
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Barry_T_Coles
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Re: Epi-chronic vs Chroni-sodic
« Reply #17 on: Oct 4th, 2007, 10:29pm » |
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Good post Brian
This is a good opportunity to see how others go through this thing & how it affects us at different levels & perhaps how we each view the pain levels we endure.
I have found it difficult to describe myself as chronic when I don’t appear to be as badly hit as others, although I shadow at differing levels daily & have up to five ice pick jabs a day along with the tooth ache in teeth I don’t have anymore I only get full blown clusters at intervals that have no time consistency about them & no indicator as to when the cycle will start or end.
Brian & I spoke about this over the phone a couple of weeks ago & I agree with the thought that we are really going from one cycle to another with each cycle being slightly or even vastly different to the last and each cycle should be attacked individually.
When I first had the pleasure of making acquaintance with the beast the cycle was a full blown 12 weeks & then disappeared for 5 years, second time around was full on for 10 weeks but the shadows & intermitting hits wouldn’t go away; I could have 3 days clear and then have 1 hit, then I might get 4 days clear and get hit for the next 4 days and so on without any consistency until I started on the Taurine & magnesium routine where the hits became further apart & the shadowing reduced but never left.
I had a period where I got no full blown hits at all for 240 days & then completely out of the blue I was into another cycle that ramped up very quickly & was full on for 5 weeks & then died as quick as it started.
So far I haven’t had one cycle that has been the same in duration or intensity and the shadowing in between has never had any consistency at all.
I have got so used to the shadowing, ice pick jabs & gum pain that I no longer take any notice of it & anything below a KIP 6 is just a nuisance.
I’ve always considered myself as semi chronic but Epi chronic has a nice ring to it.
Regards
Barry
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