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Topic: Could this be the start of chronic? (Read 445 times) |
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Major
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Could this be the start of chronic?
« on: Jul 29th, 2004, 3:43pm » |
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Hi everyone,
I'm wondering if anybody could share with me info on chronic vs. episodic.
My husband has been diagnosed with CH - he is 37 yrs old, and had his first attack starting on June 1. He had daily h/a until July 4, then nothing (well nothing too serious, just some "regular" headaches) until last night.
Last night, he had a really bad one - lasted 1.5hrs. Today he is feeling good, no shadow headache either.
I'm now concerned about this becoming a chronic condition, since I've read that chronics don't go more than 14 days without.
I am really, really hopeful that it is too early to determine this - I have a hard time imagining what life will be like dealing with this on an ongoing basis -- I can only think of what the chronics out there must go through. He's got an appot with a neuro next month.
Any info would be welcome. Thanks - this site is great.
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thomas
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Re: Could this be the start of chronic?
« Reply #1 on: Jul 29th, 2004, 3:45pm » |
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If he has less than 14 days pain free by June 1 2005, then he is chronic.
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Superpain
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Re: Could this be the start of chronic?
« Reply #2 on: Jul 29th, 2004, 3:59pm » |
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But even then chronic isn't always chronic. I'd say I am a minority, but my last cycle was 2 yrs long.
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Chris
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BobG
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Re: Could this be the start of chronic?
« Reply #3 on: Jul 29th, 2004, 4:02pm » |
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Like Thomas said, the term chronic is a measure of time. If your husband has clusters for one year without a 30-day continous break then he is considered chronic.
Eposodic sufferers usually have clusters about 4 to 8 weeks long then they go away for many weeks or months or maybe ever a year or two. Since your husband's cluster was about 5 weeks I'd say he may be out of his first cluster but sooner or later they will be back.
Now is a good time to read all you can about the cluster condition and educate yourself because you may have to educate your neurologist mext month. Good luck to you and your husband.
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| « Last Edit: Aug 2nd, 2004, 3:46am by BobG » |
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notseinfeld
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Re: Could this be the start of chronic?
« Reply #4 on: Jul 29th, 2004, 4:17pm » |
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Sorry to hear of your plight but take heart: Most every cluster sufferer at least starts out episodically and become chronic over the period of a few years. Additionally, roughly 88% of anyone that has this 'disease' are episodic and continue that way. BTW, being episodic is no fun either.
Hoping the best 4 ya,
nots
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dave_in_nj
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Re: Could this be the start of chronic?
« Reply #5 on: Jul 29th, 2004, 10:52pm » |
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I am sorry to hear about your husband, bookmark this board. There is support and knowledge here for you.
I am concerned that I have turned the corner from episodic to chronic. I am 5 weeks into a cycle and it has been years since I have been hit in the summer like this. It has been clockwork Spring and Fall for me the past few years. It is hard to stay optimistic at times....I still try to always hold out a small ounce of hope that mu current CH will be my last.
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IndianaJohn
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Re: Could this be the start of chronic?
« Reply #6 on: Jul 31st, 2004, 8:53pm » |
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You guys are scaring the hell out of me. I've had this cycle since the end of May and it's still pretty bad. I go to the doc again next week to change My meds. If this become chronic I don't know what I will do.....
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Did my brains fall out or is this headache over?
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UN_SOLVED
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Re: Could this be the start of chronic?
« Reply #7 on: Jul 31st, 2004, 9:33pm » |
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on Jul 29th, 2004, 3:43pm, Major wrote:had his first attack starting on June 1. He had daily h/a until July 4, then nothing (well nothing too serious, just some "regular" headaches) until last night.
I'm now concerned about this becoming a chronic condition |
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NOT CHRONIC ... just some anxiety setting in.
on Jul 29th, 2004, 3:45pm, thomas wrote:| If he has less than 14 days pain free by June 1 2005, then he is chronic. |
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Exactly right.
on Jul 29th, 2004, 3:59pm, Superpain wrote:| But even then chronic isn't always chronic. I'd say I am a minority, but my last cycle was 2 yrs long. |
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Chronic isn't always a chronic ? ? You lost me there.
Sounds like during your last cycle, you were chronic for 2 years.
on Jul 29th, 2004, 10:52pm, dave_in_nj wrote:
I am concerned that I have turned the corner from episodic to chronic. I am 5 weeks into a cycle |
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Anxiety again 
on Jul 31st, 2004, 8:53pm, IndianaJohn wrote:| You guys are scaring the hell out of me |
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ANXIETY Will NOT help anyone. As said before, most clusterheads are epesodic and will stay that way.
ABOUT ANXIETY
CHANCES AT BECOMINC CHRONIC ACCORDING TO THE CLEVELAND CLINIC
Unsolved
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ex_pat_asia
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Re: Could this be the start of chronic?
« Reply #8 on: Jul 31st, 2004, 10:37pm » |
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IndianaJohn,
I am in a similar situation. I am currently at (what I hope) is the peak of a episode that started in May.
My worse episode occurred several years ago and lasted 8 months. At present I am getting "beastial" visitations 5 - 6 times during the day and 3 - 4 times during the night. All of these would reach KIP8 or more if I did not treat with Oxygen at 12LPM or triptan. Primary first line of defense is the big O. Secondary, if not already exceeded dosage, is sumatriptan(Immigram) or elotriptan(Relpax). (No trex or nasal spray in my part of the world.)
Prophylactic daily treatment was just changed and is now:
240mg Verpamil 2X per day
400mg Magnesium 2X per day
1 mg betamethazone 2X per day (cortisteriod)
1mg Pizotifen 2X per day
550mg Naproxen Sodium (anti inflammatory) at bedtime
In my third day of the above regimen and finding that more of the attacks are more easily aborted with the Oxygen (and/or Relpax). Hoping this progess continues to a point that I can break free from the Oxygen so I can travel again.
The thought that I may be chronic has never occured to me, and in fact, I am living for that inevitable and mysterious departure the beast has always taken.
PFDAN to all
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ex_pat_asia
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don
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Re: Could this be the start of chronic?
« Reply #9 on: Jul 31st, 2004, 10:45pm » |
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Quote:| I am 5 weeks into a cycle and it has been years since I have been hit in the summer |
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5 weeks of pain does not a chronic make. Far from it. In fact you will need to determine your consecutive pain free time 47 weeks from now to determine if you are chronic or not.
Less than 14 consecutive days pain free within 1 year is chronic.
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| « Last Edit: Jul 31st, 2004, 10:45pm by don » |
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Redd
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Re: Could this be the start of chronic?
« Reply #10 on: Aug 1st, 2004, 10:52am » |
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Forgive me if I'm mistaken, but I think that was addressed at the convention and Dr. Volcy did confirm that the criteria had been re-defined to be 30 consecutive pain free days?
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don
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Re: Could this be the start of chronic?
« Reply #11 on: Aug 1st, 2004, 11:44am » |
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Your right Redd.
The IHS diagnostic guidelines now state pain free time less than one month.
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| « Last Edit: Aug 1st, 2004, 12:14pm by don » |
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Superpain
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Re: Could this be the start of chronic?
« Reply #12 on: Aug 1st, 2004, 4:34pm » |
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Unsolved, what I meant is I consider chronic as having clusters forever with no remission... Chronic in the truest sense. Technically, yes, I was chronic for two yrs as far as the definition goes, but the way I see it I just have really long cycles. I'm PF for now, so I'm hardly chronic.
I just see a difference in long cycles and never getting relief. Even if I go 3 yrs I will still be fairly sure that it will end at some point. I reserve the use of the word "chronic" for poor souls such as yourself that have suffered for yrs and will most likely continue to suffer either till you die, or hopefully they dissapear someday.
Chronic has become a scary buzzword around here for inexperienced newbies to freak out over.
From my personal episodic experiences, and the fact that my cycles are so long but always end, my defintion of chronic means you at least have to have headaches longer than one of my cycles and keep having them to attain the coveted title of "Chronic". 
And no offense to the newbies who fret over this matter, but I can't help but almost chuckle over worrying about being chronic after a few weeks or months. Hell, my first cycle at 15 was 4-5 months long.
But that was 18 yrs before I even heard the word chronic pertaining to headaches, and as far as I knew I was the only person in the world that suffered with these damned things. So maybe just being blissfully ignorant till I put in my time saved me from this particular anxiety. Otherwise I guess I'd probably have freaked out about it too....
Point being... Relatively there are not many chronics, and the mere word has become over used and sensationalized as of late. Have headaches for at least 3 yrs straight and then worry about being chronic. Otherwise, I am proof that there is hope and it's not going to last forever. PFDAN to you all. 
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Chris
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Jonny
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Re: Could this be the start of chronic?
« Reply #13 on: Aug 1st, 2004, 4:57pm » |
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on Aug 1st, 2004, 4:34pm, Superpain wrote:| Point being... Relatively there are not many chronics, and the mere word has become over used and sensationalized as of late. |
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..................................LOL 
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don
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Re: Could this be the start of chronic?
« Reply #14 on: Aug 1st, 2004, 5:46pm » |
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LMAO
Hey!! I've just turned chronic!
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Superpain
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Re: Could this be the start of chronic?
« Reply #15 on: Aug 2nd, 2004, 3:49pm » |
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C'mon... You guys know what I meant.
Maybe just "over-used" would be a better way to put it.
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Chris
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Jonny
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Re: Could this be the start of chronic?
« Reply #16 on: Aug 2nd, 2004, 3:56pm » |
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on Aug 2nd, 2004, 3:49pm, Superpain wrote:C'mon... You guys know what I meant.
Maybe just "over-used" would be a better way to put it. |
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Just bustin chops dude 
....................................jonny
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Re: Could this be the start of chronic?
« Reply #17 on: Aug 2nd, 2004, 6:10pm » |
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on Aug 1st, 2004, 4:34pm, Superpain wrote:I reserve the use of the word "chronic" for poor souls such as yourself that have suffered for yrs and will most likely continue to suffer either till you die, or hopefully they dissapear someday.
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Gosh ... I love to be cheered up !
Unsolved
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BlueMeanie
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Re: Could this be the start of chronic?
« Reply #18 on: Aug 2nd, 2004, 6:24pm » |
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When a cycle starts it's common to worry about turning Chronic. There is less than a 18% chance of an Episodic turning to Chronic. I wouldn't worry too much about being Chronic. Some cycles last alot longer than others. My last cycle was close to 5 months but thank the lord it finally ended. As previously mentioned, you'd have to go 48 weeks straight before concidered Chronic. Hang in there and take it one day at a time. PFDAN
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