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        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> Episodic to Chronic?
        
(Message started by: FruitbatsAngel on May 20^th, 2004, 2:14pm)

Title: Episodic to Chronic?
Post by FruitbatsAngel on May 20^th, 2004, 2:14pm

I have had a few episodes of CHs in the past 9 months or so.

The first time I had a break of 3 months before I had the next attack. The next time I had a break of 2 months before starting again. This time it was only a month and now they are back on. The GP thinks it may be that I am going chronic.

I don't like this idea. Not at all.

Could it be that I am going chronic?

On a better note, thanks to some info I was sent by OUCH (UK) I discovered that there is a portable 02 cylinder with an integral high flow regulator the NHS will provide, and my local 02 supplier had one in! Woohoo!

Ali

Title: Re: Episodic to Chronic?
Post by 9erfan on May 21^st, 2004, 6:50pm

I was going to try to bite my tongue here but I don't understand why people worry in advance of the possibility of "going chronic". Why stress yourself out about something that may or may NOT happen in the future?

But in answer to your question, NO...with your 3 month break and your 2 month break....you are not currently "going chronic".

Jonny, what's that definition of chronic again? Every day for a year with no more than a 2 week break? Jonny can tell you for sure.

Title: Re: Episodic to Chronic?
Post by UN_SOLVED on May 21^st, 2004, 7:34pm

That is correct. No more than 14 PF days in a year to be considered chronic.

My 'chronicness' just came out of nowhere. My 'cycle' started and I thought "Here we go again for another 2 months", but that 2 months has been almost 4 years now.

Unsolved

Title: Re: Episodic to Chronic?
Post by FruitbatsAngel on May 22^nd, 2004, 2:26am

It worries me primarily cos I already have about 5 different varieties of chronic pain. I could really do without adding more pain every single day of my life. I have enough as it is.

Secondly its not worrying me as in I am worrying about it a lot. Yes, it concerns me. I don't think thats abnormal. I'm certainly not stressing about it. I can't say I've thought about it more than once since I posted the message to the group.

When I said could I be 'going chronic' what I meant was is it normal for the pf parts to be getting shorter and shorter, and would that suggest a trend in the direction of chronic (you know, like based on the experiences of other people who have been there).

Have you ever wished you never bothered in the first place? Hmm, I wish I'd never asked.

Ali

Title: Re: Episodic to Chronic?
Post by miapet on May 22^nd, 2004, 9:51am

As for CH . . .I can't seem to see a reason/method/anything in what the beast can or chooses to do .. .some people are blessed, and the beast never knocks .. . some are relentlessy hit . . .others get lucky, and it's as if the beast forgot how to find them . . .how does it choose who it will do this to? No idea . . .
One of the best things that someone told me (when I very first started coming here) was: enjoy every pain free moment you get. It's important to do that *smiles*

And yep, 14 is the magic number. . .
*positive light and energy*
miapet

Title: Re: Episodic to Chronic?
Post by UN_SOLVED on May 22^nd, 2004, 1:48pm

on 05/22/04 at 09:51:14, miapet wrote:

some are relentlessy hit

That's me :(

Title: Re: Episodic to Chronic?
Post by FruitbatsAngel on May 23^rd, 2004, 3:09pm

Miapet...

I wish I had pain-free moments to enjoy, but what with the CH and a string of chronic pain problems I don't ever get below a 5 on a 0-10 scale (and thats with narcotic pain killers). I have less pain moments and more pain moments but its not the same.

Cheers

Ali

Title: Re: Episodic to Chronic?
Post by miapet on May 23^rd, 2004, 11:34pm

Fruitbats, I'm sorry you're getting hit with so many things. I don't know what you're taking the narcotics for (another condition?), but for D, they didn't help his CH, and he usually rebounds off stuff like that . . he does off otc stuff too.
I guess we can re-state that to: enjoy the less pain moments when you get them?
Since I don't know what your other conditions are, I don't have any great advice or words of wisdom, other than, you can do this . . .clusterheads are the strongest people I have ever met.
*positive light and energy*
miapet

Title: Re: Episodic to Chronic?
Post by FruitbatsAngel on May 24^th, 2004, 5:12am

Miapet...

I have fibromyalgia, RSD, OA, TMJD and a few other bits. I'm really a walking ball of chronic pain. I try to enjoy the less pain moments and work with the more pain moments.

I'm coming off the narcotics which is hard work. I don't want to rely on them right now!

Take care

Ali

Title: Re: Episodic to Chronic?
Post by sandie99 on May 24^th, 2004, 5:51am

Episodic here, but my cycles sure last long... Last one was 7 months!

Best wishes,
sandie99

Title: Re: Episodic to Chronic?
Post by miapet on May 24^th, 2004, 2:40pm

Ali,
Sorry to hear it . . .I have TMJ too, so I understand . . hope you have a good fitting appliance, that really helped me! Fibro too, hmm, I know a great pain guy who specialized in fibro . . he's in Columbus Ohio ..guess that won't help? He had my friend on an anti-depres. combo and was doing accupuncture . . .she really saw results, it was soo good for her. She also used massage . . .just some ideas for you. I was surprised at the OA (and it not being RA) . . . anyway, joint care stuff . . .there's one on the market that hits them pretty good . . my sister takes them ..if you want, I'll get the name from her (she has r/a) . . .I have no idea what RSD is . . .so I have no ideas at all . .

How comfortable are you with your doc and his ch diagnosis? With everything else you have going on, I would look at that . . .and decide if I needed a second from someone who has lots of experience with ch.

*positive light and energy*
miapet

Title: Re: Episodic to Chronic?
Post by AlienSpaceBabe on May 24^th, 2004, 3:32pm

I'm odd.... [no comments from the peanut gallery, please]

Was episodic for years and years, then chronic (two 2 1/2 year cycles with 6 months inbetween), and now appear to be episodic again....

I'm convinced that, for me, there is no standard.... it hits when it wants and stays away as long as it wants.

Title: Re: Episodic to Chronic?
Post by FruitbatsAngel on May 25^th, 2004, 2:47am

miapet,

I am in the UK so docs in the US aren't much use. I've tried acupuncture which makes me worse.

RSD is Reflex Sympathetic Dystrophy.

I think the ch diagnosis is right. I have most of the right symptoms and stuff. I'm moving areas soon too so will have new docs and will see what they say.

Ali

Title: Re: Episodic to Chronic?
Post by miapet on May 26^th, 2004, 1:11pm

I hope all goes well for you . . and that your new docs are well versed in your issues.
*positive light and energy*
miapet

Title: Re: Episodic to Chronic?
Post by mynm156 on Jun 3^rd, 2004, 2:30pm

Yeah well this post is rather depressing for me. As I just posted regarding chronic. It sound like any breaks we get we need to feel lucky for and I will just say I have been having HA almost everyday sence Feb. I did have almost a 3 week repreave from it I guess it was more like 18 days.

Good Luck Man!

MYNM156

Title: Re: Episodic to Chronic?
Post by ozzman on Jun 3^rd, 2004, 4:48pm

Sorry to correct you all, and give less hope to some, *but*, the current diagnostic criteria set forth by the International Headache Society, says, that Chronic is > 1 year and remission of < 1 month.

this is from the 2004 edition, page 45, paragraph 3.1.2

Good reference source....

http://216.25.100.131/ihscommon/guidelines/pdfs/ihc_II_main_no_print.pdf

Ozzy

PS. 30 days to go, to be officially chronic (or actually, according to the new criteria, one more day to go...) Oh well, that's life and you roll with the punches...