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(Message started by: Langa on Dec 27th, 2004, 9:29am)
Title: Am I Becoming Chronic?
Post by Langa on Dec 27th, 2004, 9:29am
Yesterday I was watching TV and enjoying a glass of wine after taking a long nap, when I started to feel the familiar twinges of a cluster.  Since my cluster cycle ended in October, I have had a couple of low level clusters, so I thought this would be the same.  Wrong!  It quickly became a level 10 cluster.  It lasted 45 minutes.  Another strange thing, my right eye felt really heavy (that’s the best way I can describe it) and was tearing all night (never happened before).  Today the back of my head and my eye area are sore (nothing new with clusters).

Everything has been different this year with clusters for me.  Not only did this cycle last 4 months, but even after the cycle was over, I got some low level clusters and weird ice-pick headaches that lasted only a few seconds.  Now this bad attack out of nowhere.  Usually, in the past 26 years, my cycles started in June and last about 8 weeks.  End of story.  Not even a twinge, until my next cycle.

I guess my fear is that I’m becoming chronic.  Does it sound like it?  How long do you have go PF to be considered Episodic?  A year? Six months?  

Nevertheless, I’m calling my Neuro to send me another script for 02.  At least in that sense I’ll feel somewhat ready, should I get hit again.

Thanks for any feedback.

Langa
Title: Re: Am I Becoming Chronic?
Post by Chillrmn1 on Dec 27th, 2004, 10:08am
Funny you should mention this, no not funny actually. Going thru same thing. My cycles (27 tears/years worth) would usually last 8 weeks, 12 max. This year, I'm heading into my 17th week. I'm experiencing the same fear as you about possibly going chronic. I should mention this year I'm on different meds than before. First time for Prednisone, Inderal, & Lithium, and of course trex and O2 for abort, but the trex is not new. Previous meds were just Verapamil and trex.

Are you trying different meds? Don't know if this is a factor for me.

I will tell you that if I ever get out of this current cycle, and even if not, I have made the decision to try shrooms to attack this damn beast. Just waiting for the harvest. I've read many posts on this site and others, and am convinced the supporting evidence exists that this may be helpful for me. Will follow up with my personal results in near future in case others are contemplating this therapy.

As for the Chronics out there, I certainly don't mean to offend and should not be taken in that context. It's just that being Episodic, at least there's a little breather in between cycles, that's all.
Title: Re: Am I Becoming Chronic?
Post by Filbert on Dec 27th, 2004, 10:20am
Officially you are chronic if don't get one clear month PF out of every twelve.Langa please don't worry about going chronic yet. I'm episodic [20 years] and have often got worried at certain times but so far it's always been a false alarm.

   All the best Filbert.
Title: Re: Am I Becoming Chronic?
Post by Langa on Dec 27th, 2004, 10:27am
Hi Chill,
During the last cycle I was on a preventative for the first time in my cluster life...Depakote ER- but I've been off of it since October.  I have also, like you, decided to go on the shrooms in the hopes of keeping another cycle at bay.  Already looking into it.  I know what you mean about chronics, at least being episodic we know we will go into remission.  

Filbert, thanks for your encouragment.  I'll try not to worry too much.

Langa
Title: Re: Am I Becoming Chronic?
Post by the_old_man on Dec 27th, 2004, 10:40am
It must be a strange year for everyone.  I usually got 2 cycles per year for the past 27 years...one in May and one in September.  They would last 4 to 6 weeks.  I went 18 months pf until late October of this year.  Then I get hit.  The ch's seem to last longer and are more intense than ever.  I am now going into my 9th week with no let up...and no sleep.  This whole thing sucks!

The Old Man  
Title: Re: Am I Becoming Chronic?
Post by Filbert on Dec 27th, 2004, 10:44am
Sorry to hear that old_ man! Any change in meds this cycle?

              Filbert.
Title: Re: Am I Becoming Chronic?
Post by dagger on Dec 27th, 2004, 11:04am
I, too, am fearing the same.  My cycles (30-plus years worth) never lasted more than six weeks until the last one and now this current one.  I am entering the 11th week and while they are not as intense as they were a month ago, it disturbs me that they are still a daily occurence except for twice (once about a month ago and luckily, on Christmas).
I took prednisone for the first time last cycle (five years ago) and they went longer.  I took it this time, too, and this one is longer, too.  Maybe there is a connection.  If I am becoming chronic, I'm scared!!  Hope you are not and me too!
Title: Re: Am I Becoming Chronic?
Post by Langa on Dec 27th, 2004, 11:12am

on 12/27/04 at 11:04:29, dagger wrote:
I, too, am fearing the same.  My cycles (30-plus years worth) never lasted more than six weeks until the last one and now this current one.  I am entering the 11th week and while they are not as intense as they were a month ago, it disturbs me that they are still a daily occurence except for twice (once about a month ago and luckily, on Christmas).
I took prednisone for the first time last cycle (five years ago) and they went longer.  I took it this time, too, and this one is longer, too.  Maybe there is a connection.  If I am becoming chronic, I'm scared!!  Hope you are not and me too!


I understand the fear.  I suppose it's a fear all episodics have.  Some of the chronics say they prefer to be chronics, then be episodics, go pain free and then deal with the devastation of knowing a cycle has begun and your life altered for the next few weeks.  I don't like it either way...  :-/

Here's wishing for PF days, nights and years...

Langa
Title: Re: Am I Becoming Chronic?
Post by E-Double on Dec 27th, 2004, 1:28pm
Try not to worry about becoming anything.......

It is what it is dear.

I never had a cycle lasting more than 1 month....
Well this one is about to enter month # 8!!!

Just try to enjoy the PF moments  when they come....

As far as the "ice-picks" I had those come out of nowhere when I thought my cycle was ending....I went on a trial of indomethacin and it helped with the "zaps"
Those bastards are like mini-CH's right??? that excruciating pain but for seconds or minutes.
The indo did not seem to help with the CH but definitely helped with the little buggers.

Try to not question the nature for it will drive ya nuts.

Have a good one!!!

Eric
Title: Re: Am I Becoming Chronic?
Post by Langa on Dec 27th, 2004, 1:51pm
Eric, month #8?  Sorry... :-/

That's exactly what I'm dreading...and I can't help it.  

Yeah, those ice-pick headaches are like CH's on Fast-Forward...it's the weirdest feeling, those quick sharp pains that disappear within seconds; zaps is another good word for the little buggers...lol.

Langa
Title: Re: Am I Becoming Chronic?
Post by the_old_man on Dec 27th, 2004, 4:33pm
Hey Filbert

   Not on any "new" meds this cycle.  Not on ANY meds.  Can't take any because of unsolved heart problem.  I was med free last cycle, too, and it ran its normal course.  The lack of sleep makes me like a zombie all day long, but I get almost no daytime hits....only 1 this cycle.  Can't imagine getting hit every day and still try to work my 10 hour day.  I guess there are bright spots in everything.  Thanks for your concern and pfdan's for you.

The Old Man
Title: Re: Am I Becoming Chronic?
Post by guesst on Dec 27th, 2004, 6:11pm
Chronic is a 12 month period with out 14 days consecutive pf.
Title: Re: Am I Becoming Chronic?
Post by Jonny on Dec 27th, 2004, 6:23pm

on 12/27/04 at 18:11:57, guesst wrote:
Chronic is a 12 month period with out 14 days consecutive pf.


Don changed it to 30 days ;;D
Title: Re: Am I Becoming Chronic?
Post by unsolved1 on Dec 27th, 2004, 6:34pm
50th month for me. Hope yours is shorter !

Unsolved
Title: Re: Am I Becoming Chronic?
Post by the_old_man on Dec 27th, 2004, 7:51pm
My God, Unsolved 1, I am so sorry.  I feel guilty complaining about my 9 weeks.  God bless you.

The Old Man
Title: Re: Am I Becoming Chronic?
Post by don on Dec 28th, 2004, 7:15am

Quote:
Don changed it to 30 days


Unless your name begins with a "J". The the pain free period is less than 1 hour.

No wait.

Thats for chronic pain in the ass.
Title: Re: Am I Becoming Chronic?
Post by CC2004 on Dec 30th, 2004, 5:53pm
[smiley=nono.gif]  NO!!!  [smiley=bigguns.gif] you are not becoming chronic

From what a few have said here, it seems not uncommon for cycles for some CH veterans to become further apart but last longer...  :-/
In my 28 years they were 2 to 2 1/2 years apart, lasting 6-8 weeks, until previous time when it had been 4 years and they lasted 5 months!  This time I had a 5 year break and am now into my 9th week - but they are easing and I put that down to water water water for last 2 weeks.  Im going 3-4 days PF between hits...
I have not been on any preventative meds

I could not bear to believe I could end up chronic.  I had no idea there were chronics until I found this site, I cried and cried for you and I wish you wonderful brave guys all the strength in the world

For me, I will remember that last time they did end after 5 months

take care all (and remember on this new year's eve that alcohol is POISON for many of us - no drinks for me  [smiley=bigcry.gif]

stay strong
CC
Title: Re: Am I Becoming Chronic?
Post by CC2004 on Dec 30th, 2004, 6:22pm

on 12/27/04 at 09:29:45, Langa wrote:
Yesterday I was watching TV and enjoying a glass of wine after taking a long nap, when I started to feel the familiar twinges of a cluster.  Since my cluster cycle ended in October, I have had a couple of low level clusters, so I thought this would be the same.  Wrong!  It quickly became a level 10 cluster.  It lasted 45 minutes.  Another strange thing, my right eye felt really heavy (that’s the best way I can describe it) and was tearing all night (never happened before).  Today the back of my head and my eye area are sore (nothing new with clusters).

Everything has been different this year with clusters for me.  Not only did this cycle last 4 months, but even after the cycle was over, I got some low level clusters and weird ice-pick headaches that lasted only a few seconds.  Now this bad attack out of nowhere.  Usually, in the past 26 years, my cycles started in June and last about 8 weeks.  End of story.  Not even a twinge, until my next cycle.
Langa


hi Langa - I had some champagne xmas eve to test if I could have a drink over xmas, thinking if it did trigger an attack I could ride it through - WRONG!  I was pounded K7-9 with peaks at K10 for 4-5 hours!  

And for weeks now, Ive been getting opposite side pain phantoms, also shadows & neck pain, and opposite side paints often quite regular (hourly sometimes) lasting 10-15 mins and getting up to maybe 6-7 on scale.  Getting pretty sick of all this as Ive got pain or discomfort half the time, but still better than the normal right side evening/night hits.  I guess all these phantoms are part of the winding down of my cycle but I dont remember this crap in the past - Ive always thought like you said - once they're over they're over, end of story!  
(Last night I got hit after 5 days, yesterday was the first day I hadnt kept up with the water water water ... )

Anyway as for alcohol, Ive decided Im not touching a drop until all the hits & phantom pains have been gone at least 2 weeks (long enough?) - such a bugger but man Im not doing that to myself again

Im 44 now with 28 year history, am thinking I dont have the resistance I used to

Langa, I gather you had been able to drink OK since october until the other night?

take care & be strong and wishing you PFDANs again
CC
Title: Re: Am I Becoming Chronic?
Post by Wendy1 on Dec 30th, 2004, 10:57pm
Wow... this is too bizarre that so many are reporting 'weird' cycles.

I am episodic.  I was taking Verapamil as a preventative this fall (stess, just about the right time as I've been 2 yrs pf, etc.)  I ran out about 3 wks ago and felt I was safe stopping cause I've never had them in December!!??  Sure enough I had 2 h/a this past week.  It was so bizarre because it's just not my season.  Nonetheless, I went back on 240mg twice daily.  Sure the hell hope I'm not becoming chronic or dependent on Verapamil...

p.s.  I have had a lot of STRESS lately though, and I have to say for myself, my cycles although season (fall or spring) are usually brought on by stress.
Title: Re: Am I Becoming Chronic?
Post by purpleydog on Dec 31st, 2004, 11:46am
This is my 10th month of getting hit this year. Longest PF time was for about  2 weeks, in the summer. Now I get 2 days here and there. I seem to have settled into cycles within cycles. And alcohol is no longer a trigger. Neither is cigarette smoke.

The damn things will be on one side for several weeks, then I get a break for a couple days, then they switch sides. Then after that happens, I will get hit again on the other side for a few days again, just like I'm getting a reminder that that fucker is still there, and wants me to know it. As if I would forget. I get hit from 2 to 8 times a day usually. Lately, some days, I've been getting even more than that.  It sucks!

Chronic? Christ, I hope not.  Got a neuro appointment coming up in a month. Guess I'll have to wait and see.
Title: Re: Am I Becoming Chronic?
Post by Zoom-zoom on Dec 31st, 2004, 4:52pm
they say each cycle is different from the last, and I believe that is what is going on.  Even this year has been weird...weather wise.....so why not headache wise?

Last year I had 3 definite cycles,
one in March, one in June, and one in October.

This year, well I can count on my digits (fingers and toes) the number of pain free days I have had....
and that is bizarre.  It takes more than a year to find out if you are chronic though, and I have to wait a while because I never did track my shadows...but I started trackign them when I found this site in August....

I may always have been, just dismissing the odd low level headaches as "normal headaches"...they didn't keep me from work or play....and I was so relieved they weren't k-7 or higher that I was forcing myself to feel lucky.... now, I am tracking every lurking twinge...lol...
maybe more "hyperchondriac" than "wiser"  but
journalling is really helping me see why I am tired 95% of the year....more than I realized.....

just hang in there.  the new year is going to bring us better weather, and less pain....
that is my biggest hope....

[smiley=winkkiss.gif]
Title: Re: Am I Becoming Chronic?
Post by Chillrmn1 on Jan 1st, 2005, 6:15am
Weather? Really hadn't given much thought to that before since I haven't been able to comfortably or seriously connect weather patterns, highs, lows, fronts, etc., as triggers to my clusters. But down here in Florida, we DID have 4 hurricanes this year.

First hurricane to hit was in August, my cycle started first week in September. Coincidence? PROBABLY NOT! This cycle started before it should have been due.

Four hurricanes hitting this state in one year hasn't happened in at least 100 years if I'm correct. Also, this has been the longest and strangest cluster cycle I've had in the 27 years of having these damn things and it's still not over.

Have to start paying attention to the weather now.

That's great, one more thing that may influence my clusters that I have no control over!

Happy New Year Everybody And Wishing All No More Clusters And All Pain Free Days!!!!!!!!!!
Title: Re: Am I Becoming Chronic?
Post by Langa on Jan 1st, 2005, 11:04am
I would have to agree that weather plays a big part, at least for me anyway.  I've always watched the weather.  One thing I've noticed during the summer, which is when I usually get my cycles, the more humid it gets, the worse I get hit.  Never fails.

CC, in answer to your question, I was able to drink alcohol until that day.  Since that kip10, I've been shadowing on and off.  

I know I have a long ways to go before I know for sure if i'm chronic, so i'm just taking it a day at a time.  

Thanks for your feedback and encouragement!

Here's hoping 2005 will be a better year for everybody...PF, of course.  ;)

Langa
Title: Re: Am I Becoming Chronic?
Post by LeLimey on Jan 1st, 2005, 6:04pm
I don't know if its just the amount of time I have spent in the kitchen over the last couple of weeks or not but being in a hot and humid atmosphere LIKE the kitchen is hell on earth for me at the moment. Going outside into the cold is a big help as I can't keep gulping O2 every five minutes. I've been leaving the windows open and freezing my butt off..everything trying to breath colder air to ease my head. So although its not strictly weather I can see what you are saying and agree!
Title: Re: Am I Becoming Chronic?
Post by Langa on Jan 1st, 2005, 11:12pm

on 01/01/05 at 18:04:49, LeLimey wrote:
I don't know if its just the amount of time I have spent in the kitchen over the last couple of weeks or not but being in a hot and humid atmosphere LIKE the kitchen is hell on earth for me at the moment. Going outside into the cold is a big help as I can't keep gulping O2 every five minutes. I've been leaving the windows open and freezing my butt off..everything trying to breath colder air to ease my head. So although its not strictly weather I can see what you are saying and agree!


Hi LeLimey...we will certainly go to some extents to get relief huh?  I read somewhere how people will go out on their decks in freezin weather, butt naked to abort clusters... :o

Again, I strongly believe weather can be a trigger for many chers...ie., barometric pressure, humidity, etc.

Langa
Title: Re: Am I Becoming Chronic?
Post by vig on Jan 1st, 2005, 11:20pm
aye, like a canary in a coal mine... I KNOW when storms are coming... pressure CHanges get me and the beast a tusslin'...
Title: Re: Am I Becoming Chronic?
Post by Langa on Jan 1st, 2005, 11:26pm

on 01/01/05 at 23:20:50, vig wrote:
aye, like a canary in a coal mine... I KNOW when storms are coming... pressure CHanges get me and the beast a tusslin'...


I also KNOW when storms are coming, when in cycle...the shadows are relentless and the beast comes with a vengeance... :-/

Glad to know i'm not crazy...

Langa
Title: Re: Am I Becoming Chronic?
Post by Jonny on Jan 1st, 2005, 11:35pm

on 12/28/04 at 07:15:03, don wrote:
Unless your name begins with a "J". The the pain free period is less than 1 hour.

No wait.

Thats for chronic pain in the ass.


Dude....I told you the bath house was out of Astro lube....its your own fault it hurt ;;D
Title: Re: Am I Becoming Chronic?
Post by calebgg on Jan 5th, 2005, 7:34am
I have the same worry. I sometimes worry that worrying about clusters will simply bring them on. As soon as I get the twinge, I start to think "Uh-Oh it's happening again" and then it starts... Luckily I'm not chronic yet... But I have another question: I'll put it here, and also start a new topic...
I read that CH usually affects 20-40 year olds. I got my first at 26, nine years later still get them about once a year. THey seem to start as randomly as they started. THat said, is there ever a time when they stop altogether? Are there any people out there that had them for a few years only? A decade or so? Do you know anything specific that led to the end of them? Quitting a job, retirement, marriage, divorce, a new partner, new children? Any medical treatment?
Thanks,
Caleb
Title: Re: Am I Becoming Chronic?
Post by Langa on Jan 5th, 2005, 9:15am
HI Caleb and Welcome!

I've had clusters since I was 10 yo.  I'm 36 now. So for most of my life I've had them and there doesn't seem to be an end in site.  There are people on this site in their 60's that still have them.  I think for most of us it will be a lifetime thing, unless there's a cure.

As to triggers, I've come to the conclusion there's no rhyme or reason.  My clusters used to come every year, every June, without fail, twice it skipped a year, but when it came, it came in June.  This year nothing makes sense.   :-/  Again, no rhyme or reason.

Some Episodics have remission of periods of 5 years and more, from what I've read, I haven't been that lucky.

Langa
Title: Re: Am I Becoming Chronic?
Post by CC2004 on Jan 8th, 2005, 1:16am

on 01/05/05 at 09:15:54, Langa wrote:
HI Caleb and Welcome!

I've had clusters since I was 10 yo.  I'm 36 now. So for most of my life I've had them and there doesn't seem to be an end in site.  There are people on this site in their 60's that still have them.  I think for most of us it will be a lifetime thing, unless there's a cure.

As to triggers, I've come to the conclusion there's no rhyme or reason.  My clusters used to come every year, every June, without fail, twice it skipped a year, but when it came, it came in June.  This year nothing makes sense.   :-/  Again, no rhyme or reason.

Some Episodics have remission of periods of 5 years and more, from what I've read, I haven't been that lucky.

Langa


I agree - no rhyme or reason, except maybe they do get further apart as you get older - for me they have so far.  28 years (since I was 16) every 2-2 1/2 years and I was never able to determine why new bout started, sometimes stressed sometimes not etc etc.  But before previous lot I had 4 year remission, and this time 5 years until current bout - but they are lasting longer.  Used to be 4-6 weeks, then 2 months, last lot lasted 5 months.
Drives you nuts trying to figure it out - I would just suggest getting as much info as you can to help with the hits when you get them.  This site has been great for me, Ive found relief with water water water, or maybe my cycle is winding down anyway...

take care & stay strong
CC  :)
Title: Re: Am I Becoming Chronic?
Post by RollTide87 on Jan 15th, 2005, 4:32pm
Still could be episodic. My first few years I got them in June and they lasted a few weeks. About the last 10 years, I'm 39, they have started in Nov. and lasted about 16 weeks. Sounds very similar. Scott. RTR


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