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Leggs
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Question for chronics....
« on: Aug 17th, 2005, 8:02pm » |
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I have been episodic for 23 years. My CH became very predictable and regular in 2002, where I get it like clockwork in July and February.
Occassionally, something set it off to go out of cycle, hormones, illness, etc, but it never lasted more than a month.
My question for you chronics is this (and I know your answers will vary, that's the nature of clusters), have you always been chronic, if you were first episodic, how long/when did you become chronic? Was there a particular event/treatment which set it off? Did they perhaps just start running closer together?
Here's why I am asking. I got in a car wreck, and the next cluster I had WOULD NOT GO AWAY! It lasted for 3 months, then I started eating Excedring 3-4 times a day to tone it down a bit, until I broke the habit in July and went on Kudzu (thanks Nani, Floridian, others).
After I was in the wreck, not only did I have clusters but additional pain in my neck, back of my skull and face. An important point I told my doctor the last visit was, independent of the cluster, the pain was NOT one sided, he agreed I did NOT have Trigeminal neuralgia.
I have greatly improved with the neck and skull stuff. I was thinking I really needed to see if I could go off kudzu, to see if I continued to be PF. I stopped taking 1 (I am on the standardized Solaray, only calls for one in the morning and one in the evening) in the evening, had some shadows, but basically PF.
Today, I accidentally forgot my morning Kudzu, and thought it would be a good day to see if it made a difference. Much to my disappointment, I was having shadows today, my right eye socket was aching, right sided congestion, and my eye tearing and turning red. 
I am just really terrifed the accident may have made me chronic. I just need to know what I may be facing, or if the trauma causing the other issues just put me in a "temporary" chronic state.
Thanks for your response!!!
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E-Double
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Re: Question for chronics....
« Reply #1 on: Aug 17th, 2005, 8:20pm » |
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I was episodic with clear cut cycles in spring & Fall for 9 yrs.
I finally got a proper diagnosis last yr. was put on meds for the first time and have been since........Went chronic at the end of March.
The only difference this round has been treatment.
For all I know it has extended my relatively brief cycle.
I will never know.
Are you saying that your February cycle never broke and that you continued straight through the July cycle that you usually have?
Either or you have not reached the 1yr. mark without 30 consecutive PF days therfore you would not be considered chronic.
My personal opinion is as follows,
Don't sweat it!!!!!!!
Deal with it the best you can and do not worry if or when you might become chronic.
Having to deal with 1 CH is bad enough so who cares. We are all the same yet very different.
Live life to the fullest and do not worry!
Hugs,
Eric
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Leggs
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Re: Question for chronics....
« Reply #2 on: Aug 17th, 2005, 8:41pm » |
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Thanks Eric; I was afraid to get the reply out of my mailbox right before I go to bed, but glad I did.
The last lines were nice to hear so I won't go to bed obsessing.... 
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Salvelinus
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Re: Question for chronics....
« Reply #3 on: Aug 17th, 2005, 8:54pm » |
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I started out chronic, and stayed that way for about 10 years. Then I became episodic for a few years . . . thought at times I had beaten it--you know what happens next. Anyway, in the last couple years I went chronic again.
I still believe my clusters started because of trauma. I may have been set up to have them anyway, but I feel that it is what started them. You can get a lot of things (ie, joints) knocked out of whack in a car wreck.
I am a physical therapist, and have tried many different treatments. One thing I do which is probably the biggest help is to check my pelvic alignment. When my sacroiliac joint is in dysfunction, I have one leg shorter than the other. If I correct it, I can prevent or even abort some clusters.
If you haven't seen a PT who specializes in spine and sacroiliac dysfunctions since your wreck, I strongly recommend you do so. I discovered my problem in PT school, had it corrected ("hey, everyone--look at this!" , and my first remission started that day.
Because I had it so long, it is now a chronic problem for me. I've been able to train my wife to assess me, and help me with the correction technique, but I'd rather not have to deal with it.
Anyway, that's my $0.02. Good luck, and I'll pray for PFDAN's for you.
Namaste,
--Scott
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Re: Question for chronics....
« Reply #4 on: Aug 17th, 2005, 9:17pm » |
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I was episodic for 26 years. I had brain surgery for a burst aneurysm in 10/99, my current "cycle" started in 7/2000. My neuros and neurosurgeons said there was no connection. I'm still not sure.
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unsolved1
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Re: Question for chronics....
« Reply #5 on: Aug 17th, 2005, 10:00pm » |
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I was episodic for the first 12 years and i've been chronic for the past 5 years.  Don't know why I went chronic. Just started a cycle that wouldn't end!!
I wouldn't worry about becoming chronic ... it'll only bring on anxiety and make things worse.
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Re: Question for chronics....
« Reply #6 on: Aug 18th, 2005, 5:33am » |
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Never suffered from any type of headache, then 16 years ago was involved in a very bad car accident where I went with the right hand side of my head through the windscreen. Accidentily the same side I get CH.
In hospital they did all the tests and the conclusion on spine and head absolutely clear. A year and a bit later I started with Ch (episodic) but was not diagnosed until a few years later. In that time I went through many brain scans and x-rays and they still found nothing.
Now about 2 years ago I started with a cycle and it has not stopped, yet. I'm very much the denial type. I still believe that I will go back to being episodic because if I think differently, I just want to throw in the towl and give up.
I still do think that major trauma to the head or spine may be a trigger.
I truely believe what Eric says although it is sometimes difficult when you shadow and get hit daily:
Quote:| Live life to the fullest and do not worry! |
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and like UNsolved said:
Quote:| I wouldn't worry about becoming chronic ... it'll only bring on anxiety and make things worse. |
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So good luck and PF wishes to you!
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Jill
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Re: Question for chronics....
« Reply #7 on: Aug 18th, 2005, 8:06am » |
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Hey Leggs,
I have been chronic for a little over three years now - started that way... Dont know what started them, was a normal college student sitting in class one day and bam! They havent stopped since...
It is interesting to read how some start out episodic and can go chronic or they can stop or vise versa.. You asked a good question. Sorry that I couldnt help moe but... being chronic, I know that we are stronger than we think we are and that no matter what, we can do this.. we have too...
Jill
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Re: Question for chronics....
« Reply #8 on: Aug 18th, 2005, 1:22pm » |
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I am not quite chronic yet, I will be in October. I have only had them for 2 years. I know they first started in October of 2002. Stopped over the summer and started again in October of 2003. They have died down, but I am not completely pain free. I am nervous about October coming. I don't know why mine started when they did. Before I knew what was going on I thought I was being punished for all the drugs I had done.
Best wishes,
Brandi
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mynm156
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Re: Question for chronics....
« Reply #9 on: Aug 18th, 2005, 2:16pm » |
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Hi LEGGS!!
I was episodic for about 10 years went went officially chronic this Feb. So Ive been chronic a year and a half. No event seemed to set me off other than I graduated College that year.
I hope that you are in a TEMP right now and that PF days are coming your way soon.
Your Brother in Pain
MYNM156
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Re: Question for chronics....
« Reply #10 on: Aug 18th, 2005, 4:53pm » |
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I'm chronic and always was, even before I knew what CH was.
I agree with Double E in that it doesn't pay to concern ourselves with the difference between episodic and chronic.
What matters is how we make the best of what we have at any given moment. Been a while since you've had a PF day? Make the most of the PF hours you do have. Take a walk in the woods when you know you probably won't get hit. Enjoy a movie, anything to celebrate that time. If it's nothing more than sneaking that sinful spoonful of chocholate chip cookie dough, you are doing it for YOU!
Pegg
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Re: Question for chronics....
« Reply #11 on: Aug 18th, 2005, 5:17pm » |
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on Aug 18th, 2005, 4:53pm, Redd715 wrote:I'm chronic and always was, even before I knew what CH was.
I agree with Double E in that it doesn't pay to concern ourselves with the difference between episodic and chronic.
What matters is how we make the best of what we have at any given moment. Been a while since you've had a PF day? Make the most of the PF hours you do have. Take a walk in the woods when you know you probably won't get hit. Enjoy a movie, anything to celebrate that time. If it's nothing more than sneaking that sinful spoonful of chocholate chip cookie dough, you are doing it for YOU!
Pegg |
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Re: Question for chronics....
« Reply #12 on: Aug 18th, 2005, 7:21pm » |
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on Aug 18th, 2005, 4:53pm, Redd715 wrote:Take a walk in the woods when you know you probably won't get hit. Enjoy a movie, anything to celebrate that time. If it's nothing more than sneaking that sinful spoonful of chocholate chip cookie dough, you are doing it for YOU!
Pegg |
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I love it. Thanks and jumbo hugs. All I can say right now, is, I AIN'T SCREWING WITH THE KUDZU ANYMORE, that is, I am NOT going to be a dumba$$ and stop taking it, and goof around with success.
That was the first serious pain I had (a couple days ago when I forgot to take my morning Kudzu) since I started the kudzu.
I appreciate everyone's input. I am just a big "WHY" kind of person, why did it start, why did it change, etc.
I will take everyone's advice and not obsess about this, keep on the kudzu, and just going to have my doctor keep track of my calcium stuff and keep taking it.
It's just kind of weird to try and discuss treatment, when the problem is "sort of" controlled, no biggies, nothing past kip5 or so. I still have not gotten O2, which I would like to try for the big ones, but nothing's happening on the kudzu to warrant it... maybe in February.
It's just status quo for now though, atleast I will not change anything until I take 3 teacher certification tests September 17; I have to have my brains about me to study. Hey, that's a way to live my life, getting into a classroom with 30 middle school kids! Yeehah!
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Re: Question for chronics....
« Reply #13 on: Aug 18th, 2005, 7:26pm » |
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on Aug 17th, 2005, 8:54pm, Salvelinus wrote:but I feel that it is what started them. You can get a lot of things (ie, joints) knocked out of whack in a car wreck.
I am a physical therapist, and have tried many different treatments. One thing I do which is probably the biggest help is to check my pelvic alignment. When my sacroiliac joint is in dysfunction, I have one leg shorter than the other. If I correct it, I can prevent or even abort some clusters.
If you haven't seen a PT who specializes in spine and sacroiliac dysfunctions since your wreck, I strongly recommend you do so. I discovered my problem in PT school, had it corrected ("hey, everyone--look at this!", and my first remission started that day.
Because I had it so long, it is now a chronic problem for me. I've been able to train my wife to assess me, and help me with the correction technique, but I'd rather not have to deal with it.
Anyway, that's my $0.02. Good luck, and I'll pray for PFDAN's for you.
Namaste,
--Scott |
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I agree with the car wreck thing, I may not have been falling over the next day, but I have not been the same since. I was just cruising along until my regular February cluster, and BAM, what the hell is this???? MONTHS of it, I just needed to find out what was going on.
Interesting about the PT...I have been feeling lately, I just need to have my back CRUNCHED. I actually DO have one leg longer than the other, always have, wear that shoe off faster., but this feeling in my back is since the wreck.
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Leggs
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Re: Question for chronics....
« Reply #14 on: Aug 18th, 2005, 7:28pm » |
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on Aug 17th, 2005, 9:17pm, nani wrote:| I was episodic for 26 years. I had brain surgery for a burst aneurysm in 10/99, my current "cycle" started in 7/2000. My neuros and neurosurgeons said there was no connection. I'm still not sure. |
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I am with you Nani, why now? What's it related to? I wouldn't be sure either. So few can explain what brings them on , or what they THINK, how can the be so sure.
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Salvelinus
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Re: Question for chronics....
« Reply #15 on: Aug 18th, 2005, 8:15pm » |
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on Aug 18th, 2005, 7:28pm, Leggs wrote:
I am with you Nani, why now? What's it related to? I wouldn't be sure either. So few can explain what brings them on , or what they THINK, how can the be so sure. |
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I think the truth is in what is written here. There are so many causes, pain patterns, triggers, helps, abortives, preventatives . . . and, yet, no CURE.
It's depressing to think about. I try not to, but sometimes . . .
Quote:| Interesting about the PT...I have been feeling lately, I just need to have my back CRUNCHED. I actually DO have one leg longer than the other, always have, wear that shoe off faster., but this feeling in my back is since the wreck. |
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It sounds like you've had problems for quite a while, and that you REALLY need to see a PT. You may benefit from the correction technique I described above (definitely NOT crunching  ). Or, if it is a leg length discrepancy that cannot be corrected, you might benefit from a shoe lift. I've tried that, and had very good luck from it, with fewer headaches, but prefer to keep myself "corrected."
I hope that whatever you decide to do, it works for you . . . for a long, long time.
Namaste,
Scott
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ClusterChuck
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Re: Question for chronics....
« Reply #16 on: Aug 24th, 2005, 12:19am » |
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I was episodic for 20 years. I was never a "typical" ch'er as I never knew when I would go in cycle, and when I was in cycle, I was never "regular" with my hits. Odd times, odd numbers, odd intensity. Then, seven years ago, I went chronic. Usually had one or two hits a day. Easy to get used to, and live a normal life. Then I would have cycles within my chronicness, and go up to eight to ten a day for a month or more, and then back to my one or two.
Two years ago, July, I went into "super mode." I stopped responding to any medication and got ten to fifteen hits a day. My record is seventeen hits in one day. I am convinced that this started due to extreme stress in my life. My marriage of 28 years fell apart, all of a sudden. And my two youngest children said they wanted nothing to do with me, either. Stress helps some, and hurts others, like most of our other symptoms and treatments.
Don't worry about becoming chronic. I sometimes think that you episodic ones have it harder than us chronics. At least we don't have the fear and dread of when our cycle will start. And it totally blows my mind how "used to" you can get to your hits. A hit, or more, is NEVER easy, but it is amazing how you can adjust, and actually get used to your hits. There are plenty of chronics here that can attest to that fact.
Chuck
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Re: Question for chronics....
« Reply #17 on: Aug 24th, 2005, 12:43am » |
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on Aug 24th, 2005, 12:19am, ClusterChuck wrote:| My record is seventeen hits in one day. |
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Damn, Chuck ! Sorry 
on Aug 24th, 2005, 12:19am, ClusterChuck wrote: At least we don't have the fear and dread of when our cycle will start. And it totally blows my mind how "used to" you can get to your hits. A hit, or more, is NEVER easy, but it is amazing how you can adjust, and actually get used to your hits. There are plenty of chronics here that can attest to that fact.
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It's not the next cycle I fear, it's the next headache!!
I tell my doctors that I can handle 2 - 3 hits a day but when it gets to 6 and 8 hits (or more) per day ... I fold. I don't want to live that way. I'd rather be in the hospital (or anywhere) KNOCKED OUT (if thats what it took). I can't get used to a (MAJOR) hit every few hours night and day. I don't want to get used to it. I'd rather be dead (or at least unconscious)
Just my opinion
Hope you're doing better than me right now (everyone)
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Re: Question for chronics....
« Reply #18 on: Aug 25th, 2005, 8:45am » |
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i was spring and fall like clockwork for 16 years then nov 1999 got one that wouldnt go away Terry
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Leggs
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Re: Question for chronics....
« Reply #19 on: Aug 25th, 2005, 1:00pm » |
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Terry, can you think of anything that may have prompted it?
I have heard they are supposed to subside, that is from DOCTORS, but what I have heard more often from sufferers is they get worse or change as time goes on
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