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(Message started by: E-Double on Aug 7th, 2004, 11:11am)
Title: Question for chronics??
Post by E-Double on Aug 7th, 2004, 11:11am

on 08/06/04 at 19:38:57, Redd715 wrote:
So no meds other than over the counter stuff, and as the last 10 years progressed these F'ers have sort of mutated, to the point where as of this spring my chronic status has adding full blown cycles my first cycle lasting about 12 weeks.  
This beast mutates itself.........


Redd that sounds awful and my heart goes out to you and ofcourse all the rest who are chronic as it does for the rest of us.

What does that mean to have cycles within a chronic state?
I've read about this happening to some of you guys and was just curious if you could explain.
Thanks(just trying to further my undersatnding of all CH'ers

Hugs to all and hopefully some relief!!!

Eric (episodic)
Title: Re: Question for chronics??
Post by UN_SOLVED on Aug 7th, 2004, 11:22am
There is no "cycles within cycles". Either you are epesodic and either in or out of cycle .... or you are chronic, meaning you've stayed in cycle without more than 30 days PF withing the last year.

Chronics ... like everyone else I suppose, can have good days and bad days ... or good weeks and bad weeks ... and so on.

Unsolved

You can't be 'chronic' and have ONLY a 12 week cycle...regardless of how bad or easy it was and regardless of medications used.
Title: Re: Question for chronics??
Post by E-Double on Aug 7th, 2004, 11:33am

on 08/07/04 at 11:22:23, UN_SOLVED wrote:
There is no "cycles within cycles". Either you are epesodic and either in or out of cycle .... or you are chronic, meaning you've stayed in cycle without more than 30 days PF withing the last year.

Chronics ... like everyone else I suppose, can have good days and bad days ... or good weeks and bad weeks ... and so on.

Unsolved

You can't be 'chronic' and have ONLY a 12 week cycle...regardless of how bad or easy it was and regardless of medications used.


Not trying to start a tiff! brotha....just asking because I've read this before. Just curious how this occurs... maybe cycles of HIGH intensity followed by constant "typical chronic"
I don't know that's why asking.
Title: Re: Question for chronics??
Post by Redd715 on Aug 7th, 2004, 12:43pm

on 08/07/04 at 11:22:23, UN_SOLVED wrote:
There is no "cycles within cycles". Either you are epesodic and either in or out of cycle .... or you are chronic, meaning you've stayed in cycle without more than 30 days PF withing the last year.

Chronics ... like everyone else I suppose, can have good days and bad days ... or good weeks and bad weeks ... and so on.

Unsolved

You can't be 'chronic' and have ONLY a 12 week cycle...regardless of how bad or easy it was and regardless of medications used.



Sorry Mike...but There was a sub-set in Dr. Volceys powerpoint presentation at the convention that included both being chronic along with the addition defined cycles. It's cycle within a cycle.  I can't recall if the percentage was 7% or 12%, but it was there in volceys presentation and I pointed it out to Vig as I saw it and he briefly mentioned it.  It does exist Dear....and I happen to fall into that subset.    Not upset with you hun...just clarifying the facts.

I'd never gone more than two weeks PF for the last 5-6 years.  Then this spring, I had the first 12 weeks of hell of 6-8 attacks a day for 12 weeks in my life.  I'm once again averaging 4-6 days between hits with my longest streach of 10 days happening about 7 weeks ago.  According to what Volcey had to say as well as my specialist who attended a medical providers seminar with Volcey earlier this year, I will go back into another cycle from hell.  The question that remians unanswered at this point is when it's going to happen.
Title: Re: Question for chronics??
Post by E-Double on Aug 7th, 2004, 12:52pm
Thanks guys! :)

Eric
Title: Re: Question for chronics??
Post by synergy2120 on Aug 7th, 2004, 1:09pm
Marc was diagnosed with chronic because he never gets a break. On a good day he will have no number 10 attacks but small sharp stabs and attacks reaching a number 7 - on a good day the pain settles to a number 5.
On a bad day he gets attack after attack ranging from number 7's to the killer number 10.
On a really good day he gets shadows of the pain but it just niggles him and doesnt amount to anything - he doesnt have days like this very often.
He's bad days were getting worse but they are now getting less - maybe a cycle for a chronic is the consectuitive bad days?
Title: Re: Question for chronics??
Post by Robert_C. on Aug 7th, 2004, 4:58pm

Quote:
like everyone else I suppose, can have good days and bad days ... or good weeks and bad weeks ... and so on.


I've been in this cycle for 9 months now, with an average at 3 with peaks at 7 every day.  I haven't had a single pain free day since last October.  But during the 9 months, there were periods of 3 to 4 weeks where my average would go up to 5 with peak at 9 or 10 and then would go down again for another few months.  

8 days ago, I started another one of those non-'cycle'.  Average 7 or 8 with peaks at 9.  I don't see any pattern in them since I didn't take any notes on the dates they happened.  Call them whatever you want but they do happened to some of us.

Oh yes, I forgot, I'm not a chronic yet.  So I would say that 'cycles' during a cycle, do happened for an episodic. ;)

Robert
Title: Re: Question for chronics??
Post by UN_SOLVED on Aug 7th, 2004, 6:00pm
Like I said ... chronics have 'good days' and 'bad days'. Throwing in the term 'cycle within a cycle' is ridiculous. Dr. Volcey or not ...

How can you be 'chronic' and have 'additional cycles' ??
WTF ??? Makes NO damn sense.

Your statements are confusing :



on 08/07/04 at 12:43:42, Redd715 wrote:
I'd never gone more than two weeks PF for the last 5-6 years.  

 I'm once again averaging 4-6 days between hits with my longest streach of 10 days happening about 7 weeks ago.


What ??

4 - 6 days between hits would add up to many PF days quick. Doesn't sound chronic (by defintion)



Unsolved
Title: Re: Question for chronics??
Post by Redd715 on Aug 7th, 2004, 6:18pm
30 days consecutive pf days is the criteria dear.....




Edit:  Not added up...  I won't argue semantics here, Hun...I don't make the rules nor do you...we just have to feel the pain...  Glad I'm not chronic by your definition. However I think I'll take the risk of my specialist treating my condition as such.
Title: Re: Question for chronics??
Post by UN_SOLVED on Aug 7th, 2004, 6:25pm
well..I guess that means that you can go 29 PF days and then have 1 single attack and then start all over ...  for a year with a total of 12 HA's and be considered a chronic clusterhead  ???????????????????????????


Unsolved
Title: Re: Question for chronics??
Post by Redd715 on Aug 7th, 2004, 6:31pm
We know this doesn't manifest itself that way... ::)  So do the ones who decide the criteria...

But I concure that it could be misleading to those fast to self diagnose.
Title: Re: Question for chronics??
Post by Jonny on Aug 7th, 2004, 6:37pm
My two cents

Having been chronic for 29 years (Dont know what the fuck I am now) I know that I would have periods of worse HA's at certian times of the year........aint saying cycles.....just rough spots in the road

Chronics do experience some sort of cycle type of thingy........not sure what to call it but its there.

.......................................jonny
Title: Re: Question for chronics??
Post by E-Double on Aug 7th, 2004, 7:17pm
Hey all,

The last thing I wanted to spark was a debate or arguements between sufferers.

I just had a simple question with obviusly not a simple answer.
My intentions were just to educate myself further and others who may be questioning there own cycles and pain.

I've been in cycle since the end of May and was going HARD until mid July then went 2 weeks that were relatively MILD(even had a PF day so I thought I was winding down) only to start getting hit HARD again(although not as bad as originally but still damn painful)

I was just curious what you guys go through and how these actual definitions become realities.

Regardless, IT SUCKS FOR ALL !!!

Try to catch some pain free moments!!

Best to all,

Eric
Title: Re: Question for chronics??
Post by Jonny on Aug 7th, 2004, 7:19pm
Thanks Eric........it does suck!

...............................................jonny
Title: Re: Question for chronics??
Post by UN_SOLVED on Aug 7th, 2004, 7:26pm
I don't have any bad feelings for any of you.

I love to debate this stuff !!  LOL  ;)

PF Wishes,
Unsolved
Title: Re: Question for chronics??
Post by Robert_C. on Aug 7th, 2004, 9:01pm

Quote:
There is no "cycles within cycles".


Quote:
"typical chronic"


Quote:
It's cycle within a cycle.


Quote:
chronics have 'good days' and 'bad days'


Quote:
Chronics do experience some sort of cycle type of thingy



Quote:
how these actual definitions become realities


Guys,
Why is the "wording ' so important [smiley=huh.gif]
Same as the kip scale.  Everybody as his own interpretation of the pain level they're at and DEFINITIONS
Title: Re: Question for chronics??
Post by Robert_C. on Aug 7th, 2004, 9:12pm
:-[omethings wrong with my computer


Guys,

Why is the 'wording' so important

Same as the kip scale.  Everybody has his own interpretation of what his pain level is.  In both these cases, DEFINITIONS are to be used as a REFERENCE, not to the letter.

Stop being so anal!


Quote:
But I concure that it could be misleading to those fast to self diagnose


Is that the only reason for this arguments?

Robert
Title: Re: Question for chronics??
Post by ex_pat_asia on Aug 7th, 2004, 11:54pm
Tempest in a teapot folks. Pain, by its nature, is subjective and will be until they invent a metric for it which is not going to happen any time soon. As to cycles within a cycle...of course they happen. All around us, in the world of physics, there are examples of cyclity within cyclicity.

I know it helps, any time we think we have a handle to hold on to, that erases some of the gray...but guys this isn't what we have. It is entirely acceptable to note cycles within the conditional "chronic" status. It can also be confusing to use the word "episode" within a Chronic diagnosis. That is where we might agree to a semantical rule. The two primary states of condition are Chronic and Episodic. Within either there can be observed cyclicity.

Now let me throw a new curve ball in to the discussion: I once had a specialist tell me that he thought that I was experiencing migraine overlay on my clusters. he felt the literature pointed strongly to different modalities  and that research had been done suggesting that dual modalities could co-reside.

He told me this several years ago. In those days I was not so proactive on my health in general and certainly not on my clusters. ("Just make it go away doc...gimme one them silver bullets you guys have).

Since then I haven't found anything on the subject...but it does confuse the issue on this board if it exists. Any thoughts, references, etc.?

Cheers and PFDAN all.

"The ability to quote is a serviceable substitute for wit."
- W. Somerset Maugham


Title: Re: Question for chronics??
Post by E-Double on Aug 7th, 2004, 11:58pm

Quote:
Now let me throw a new curve ball in to the discussion: I once had a specialist tell me that he thought that I was experiencing migraine overlay on my clusters. he felt the literature pointed strongly to different modalities  and that research had been done suggesting that dual modalities could co-reside.  


Do you mean that during your CH cycles you would also get Migraines??

That happened to me a few times as well. Weird feeling
Title: Re: Question for chronics??
Post by Robert_C. on Aug 8th, 2004, 6:53am

Quote:
Stop being so anal!


Sorry I wrote that.   :-[ It just seems that there's a lot of 'threads' that ends up being a debate over semantic instead of a talk about the issue.

With that said:

Quote:
Do you mean that during your CH cycles you would also get Migraines??

Happens to me too.  In my case, I'm not sure if it's migraine though, could be only tension headaches (which makes sense, with the things we have to deal with).  I know the difference between the two, but it just gets very confusing at some point. :-/

Tata! ;;D

Robert
Title: Re: Question for chronics??
Post by ClusterChuck on Aug 8th, 2004, 7:16am
I am chronic.  During my normal times, I get one or two hits a day.  Easy to deal with.  During bad periods (cycle within chronicness?) I can get 6 to 10 hits a day.  These periods last from 6 to 10 weeks, and then I go back to my normal 1 or 2 a day.

I am presently in a "cycle" or bad period of getting 8 to 12 hits a day.  This "cycle' or bad period has been going on for 13 months now.  I sure hope this is not my new "normal"!  Can't wait to get back to 1 or 2 a day!

Chuck
Title: Re: Question for chronics??
Post by E-Double on Aug 8th, 2004, 7:36am

on 08/08/04 at 07:16:50, ClusterChuck wrote:
I am chronic.  During my normal times, I get one or two hits a day.  Easy to deal with.  During bad periods (cycle within chronicness?) I can get 6 to 10 hits a day.  These periods last from 6 to 10 weeks, and then I go back to my normal 1 or 2 a day.

I am presently in a "cycle" or bad period of getting 8 to 12 hits a day.  This "cycle' or bad period has been going on for 13 months now.  I sure hope this is not my new "normal"!  Can't wait to get back to 1 or 2 a day!

Chuck


Prayers with you all!!! [smiley=hug.gif]

I had different type of chronic pain for many years(back) which I was able to get under control and have been relatively pain free. Now it seems I like I get really bad debilitating pain every 3 years. My point is with a lot of other pain, you can almost habituate(to an extent) and get used to it.

With these demons I could not imagine that being possible and if it  is in the slightest, then having cycles within would be devestating because now they're coming @ Higher rates, different and more intensely.

That sucks!!! Just complete intermittent punishment!!
Devestating :-[

I'm here for all of you!
Eric


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