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        Cluster Headache Help and Support >> Cluster Headache Specific >> limited by chronic/episodic "standards"?
        
(Message started by: seventh on May 6^th, 2007, 3:47pm)

Title: limited by chronic/episodic "standards"?
Post by seventh on May 6^th, 2007, 3:47pm

Hello, i was wondering, is it possible to have, like, 2 months of CH, then a month PF, or 1 one of CH and 2 months of PF or even 1 month?
is it always limited by the "standards"? or there are something abit more to those "standards"?

Thanks! :)

Title: Re: limited by chronic/episodic "standards&qu
Post by Rosybabe on May 6^th, 2007, 4:21pm

Hi Seventh!

There are not standars for Ch. You can have anything from a week episode to be chronic and have them everyday...

It is different for each one of us...

I have them 3 months out of the year, 12 continuos weeks and then they go away and come back next year around the same time..

I hope you are feeling more confident now and ready to go to the Doctor to get a proper diagnose.

Good Luck and keep us informed please.

Rosy.

Title: Re: limited by chronic/episodic "standards&qu
Post by Redd on May 6^th, 2007, 4:51pm

I think you are refering to diagnostic criteria that would define the difference between episodic and chronic.

Chronic would be described by criteria of 12 months of CH without a remission period of 30 consecutive days.

Title: Re: limited by chronic/episodic "standards&qu
Post by BMoneeTheMoneeMan on May 6^th, 2007, 7:31pm

Hi Seventh
You can get any combo of CH that you can think of. I am mostly episodic and consider myself episodic, however, I dont go for 30 days PF. If I do things like drink alcohol at any time, there is a good chance I will get hit whether in cycle or not.

I had a good stretch of about 7 months mostly pain free. Average about 2 a month for 7 months, then recently, I went into high cycle. 2 nights ago I got hit 4 times, with 2 of them being a real cornholing. Last night totally pain free.

The moral of the story is, this beast can come and go as it pleases.

PF wishes
BMonee

Title: Re: limited by chronic/episodic "standards&am
Post by chrisw on May 7^th, 2007, 10:39am

I consider myself chronic/episodic. I just got out of a horrible nine month cycle, but there is always a little residual pain in my CH area. I went over a year without an actual attack, but the beast never let me forget that he was in there. I will sometimes get the burning, or the quick stab, and they never seem to completely go away. Its like there is some sort of damage in there. My doc says when you go a full week with no pain at all then go off of the verap. Well I have been on verap for 21/2 yrs straight. i just lower the dose when I am not having full blown attacks. I guess I wonder if other "episodics" have this leftover shadow even when they are completely out of cycle also?

I can never forget the fact that I am a clusterhead, even when I am not having attacks. I am grateful that my cycle has ended, but I know that I am far from cured.

best wishes,
chrisw

Title: Re: limited by chronic/episodic "standards&qu
Post by BarbaraD on May 7^th, 2007, 2:45pm

I can't remember being completely pain free since 97. I may not have full blown hits, but I have shadows daily so I'm reminded that Mr. Demon is with me. I consider shadows being pain free, but never know when a full blown hit will happen or how long they will last or how often they will occur.

CH is unpredictible to say the least.

Hugs BD

Title: Re: limited by chronic/episodic "standards&qu
Post by TonyG1 on May 7^th, 2007, 8:34pm

I consider myself chronically episodic ;;D Like Rosy, I go about three months every two years like clock work; however, the beast is tricky and I've had isolated CHs (rarely) without going into a full blown cycle ... I've been out of cycle since January (knock on wood!!) but today I felt a slight shadow... the thing about the condition is it can and does morph for many ppl .... and effective management and treatments vary greatly from person to person ... sort of a designer condition ... everyone gets a one-of-a-kind

Title: Re: limited by chronic/episodic "standards&qu
Post by thomas on May 8^th, 2007, 2:27pm

Chronic, episodic who really gives a shit what label you put on it. CH sucks no matter how often you get them.

Title: Re: limited by chronic/episodic "standards&qu
Post by TonyYZF on May 15^th, 2007, 10:48pm

I am approaching my first year anniversary since diagnosis and I am not sure I can say I have had a single pain free day since it started. Fortunately, though, mostly I just have daily shadows. Does keep you guessing. One member once told me he considered himself "controlled chronic" with a similar description of the daily shadows.

Tony

Title: Re: limited by chronic/episodic "standards&qu
Post by chewy on May 16^th, 2007, 7:30am

Quote:

Chronic, episodic who really gives a shit what label you put on it.

How a Doctor treats may depend on the label.

Title: Re: limited by chronic/episodic "standards&qu
Post by Bob_Johnson on May 16^th, 2007, 12:31pm

Diagnostic criteria are NOT to be taken as fixed, rigid, applying to every patient without variation. They are developed by statistical analysis of a variety of symptoms with the most common/frequent elements becoming the "diagnosis"--but always subject to individual variation.

This is the theme of this article:

Cephalalgia. 2006 Mar;26(3):241-5.

Evaluating the IHS criteria for cluster headache - a comparison between patients meeting all criteria and patients failing one criterion.

van Vliet J, Eekers P, Haan J, Ferrari M; for the Dutch RUSSH Study Group.

Department of Neurology, Leiden University Medical Centre, Leiden, The Netherlands.

Cluster headache (CH) is diagnosed according to criteria of the International Headache Society (IHS), but, in clinical practice, these criteria seem too restrictive. As part of a nation-wide study, we identified a group of patients who met all criteria minus one (IHS-CH-1), and assessed in which way they differed from CH patients meeting all criteria (IHS-CH). We performed a nation-wide questionnaire study for CH and CH-like syndromes, including questions based on the IHS criteria, and additional features such as restlessness during attacks, nocturnal onset of attacks, circadian rhythmicity of attacks and response to treatment. IHS-CH and IHS-CH-1 patients were compared. Of 1452 responders to two questionnaires, 1163 were IHS-CH and 289 were IHS-CH-1. The majority of the IHS-CH-1 patients were classified as such because their attacks exceeded 3 h (64%, median attack duration: 5 h), or came in a frequency of less than 1 per 2 days (16%). Age at onset was similar between the groups. The male to female ratio was 3.7 : 1 in the IHS-CH group and around 1.6 : 1 in the IHS-CH-1 groups (P < 0.005). Patients with attacks exceeding 3 h less often reported a circadian rhythmicity (IHS-CH-1: 49%, IHS-CH: 64%), episodic periodicity (IHS-CH-1: 65%, IHS-CH: 78%), nocturnal attacks (IHS-CH-1: 67%, IHS-CH: 78%), smoking (IHS-CH-1: 90%, IHS-CH: 80%) and restlessness during attacks (IHS-CH-1: 64%, IHS-CH: 76%) than IHS-CH patients (P < 0.005). Photo- or phono-phobia (IHS-CH-1: 67%, IHS-CH: 54%) and nausea (IHS-CH-1: 38%, IHS-CH: 27%) were more frequently reported by patients who reported to have attacks exceeding 3 h (P < 0.005). Similar proportions reported effect of verapamil on their attacks (IHS-CH-1: 54%, IHS-CH 61%). We conclude that average attack duration exceeding 3 h was frequently the reason for not fulfilling IHS CH criteria. Symptoms often accompanying CH such as restlessness, nocturnal attacks and an episodic attack pattern were relatively frequently present in IHS-CH-1 patients with longer attacks. These patients may therefore be diagnosed with CH. Attack frequency may not be a useful criterion for the diagnosis of CH. The upper limit of 3 h should be increased in future diagnostic criteria.

PMID: 16472329

Title: Re: limited by chronic/episodic "standards&qu
Post by Superpain on May 17^th, 2007, 4:43pm

I'm episodic-chronic too.
1.5-2yrs on, 1.5-2yrs off...
And I'm very happy that I'm 1 month PF, so I've got a while. :)