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Langa
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Am I Becoming Chronic?
« on: Dec 27th, 2004, 9:29am »
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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 (thatís 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 Iím becoming chronic.  Does it sound like it?  How long do you have go PF to be considered Episodic?  A year? Six months?  
 
Nevertheless, Iím calling my Neuro to send me another script for 02.  At least in that sense Iíll feel somewhat ready, should I get hit again.
 
Thanks for any feedback.
 
Langa
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Re: Am I Becoming Chronic?
« Reply #1 on: Dec 27th, 2004, 10:08am »
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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.
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Re: Am I Becoming Chronic?
« Reply #2 on: Dec 27th, 2004, 10:20am »
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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.
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Langa
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Re: Am I Becoming Chronic?
« Reply #3 on: Dec 27th, 2004, 10:27am »
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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
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Re: Am I Becoming Chronic?
« Reply #4 on: Dec 27th, 2004, 10:40am »
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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!
 
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Re: Am I Becoming Chronic?
« Reply #5 on: Dec 27th, 2004, 10:44am »
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Sorry to hear that old_ man! Any change in meds this cycle?
 
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Re: Am I Becoming Chronic?
« Reply #6 on: Dec 27th, 2004, 11:04am »
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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!
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Langa
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Re: Am I Becoming Chronic?
« Reply #7 on: Dec 27th, 2004, 11:12am »
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on Dec 27th, 2004, 11:04am, 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...  Undecided
 
Here's wishing for PF days, nights and years...
 
Langa
 
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Re: Am I Becoming Chronic?
« Reply #8 on: Dec 27th, 2004, 1:28pm »
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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
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Re: Am I Becoming Chronic?
« Reply #9 on: Dec 27th, 2004, 1:51pm »
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Eric, month #8?  Sorry... Undecided
 
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
 
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Re: Am I Becoming Chronic?
« Reply #10 on: Dec 27th, 2004, 4:33pm »
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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
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Re: Am I Becoming Chronic?
« Reply #11 on: Dec 27th, 2004, 6:11pm »
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Chronic is a 12 month period with out 14 days consecutive pf.
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Re: Am I Becoming Chronic?
« Reply #12 on: Dec 27th, 2004, 6:23pm »
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on Dec 27th, 2004, 6:11pm, guesst wrote:
Chronic is a 12 month period with out 14 days consecutive pf.

 
Don changed it to 30 days Grin
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Re: Am I Becoming Chronic?
« Reply #13 on: Dec 27th, 2004, 6:34pm »
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50th month for me. Hope yours is shorter !
 
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Re: Am I Becoming Chronic?
« Reply #14 on: Dec 27th, 2004, 7:51pm »
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My God, Unsolved 1, I am so sorry.  I feel guilty complaining about my 9 weeks.  God bless you.
 
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Re: Am I Becoming Chronic?
« Reply #15 on: Dec 28th, 2004, 7:15am »
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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.
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Re: Am I Becoming Chronic?
« Reply #16 on: Dec 30th, 2004, 5:53pm »
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nono  NO!!!  bigguns 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...  Undecided
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  bigcry
 
stay strong
CC
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Re: Am I Becoming Chronic?
« Reply #17 on: Dec 30th, 2004, 6:22pm »
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on Dec 27th, 2004, 9:29am, 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
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Re: Am I Becoming Chronic?
« Reply #18 on: Dec 30th, 2004, 10:57pm »
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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.
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Re: Am I Becoming Chronic?
« Reply #19 on: Dec 31st, 2004, 11:46am »
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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.
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Re: Am I Becoming Chronic?
« Reply #20 on: Dec 31st, 2004, 4:52pm »
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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....
 
 winkkiss
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Re: Am I Becoming Chronic?
« Reply #21 on: Jan 1st, 2005, 6:15am »
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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!!!!!!!!!!
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Re: Am I Becoming Chronic?
« Reply #22 on: Jan 1st, 2005, 11:04am »
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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.  Wink
 
Langa
 
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Re: Am I Becoming Chronic?
« Reply #23 on: Jan 1st, 2005, 6:04pm »
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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!
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Re: Am I Becoming Chronic?
« Reply #24 on: Jan 1st, 2005, 11:12pm »
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on Jan 1st, 2005, 6:04pm, 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... Shocked
 
Again, I strongly believe weather can be a trigger for many chers...ie., barometric pressure, humidity, etc.
 
Langa
 
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