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StressFree
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KIP10 symptom "suicidal"?
« on: Aug 27th, 2005, 3:17pm »
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I would guess a large majority of cluster sufferers have been at KIP 10, many on a regular or even daily basis. I was surprised at the other thread, that many think suicide would be an unusual event for a cluster sufferer to follow through with. Fortunately, most of us don't have immediate access to somehow "end it quickly" when most likely to do such a thing. Or else we are able to think of family and friends that would be hurt by such a selfish act. Or we wonder about our eternal destiny, fear of death itself, etc. I've been there too many times to count. One thing I wanted to make clear regarding suicide, for anyone who may not know. Life insurance companies do not pay benefits if the dealth is suicide. Some even have fine print regarding whether death was caused by illness and what not. I hope this would be one more point that may keep someone from going that route! For eveyone who's been at that brink, or is there now, get hospitalized for the pain if needed - but hang in there no matter what! Not to be overly sappy, but you are loved! God bless all you sufferers and your loved ones. Rich
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Re: KIP10 symptom "suicidal"?
« Reply #1 on: Aug 27th, 2005, 7:07pm »
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Quote:
I was surprised at the other thread, that many think suicide would be an unusual event for a cluster sufferer to follow through with

 
It is an unusual event. Fortunately.
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Re: KIP10 symptom "suicidal"?
« Reply #2 on: Aug 27th, 2005, 8:07pm »
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on Aug 27th, 2005, 7:07pm, don wrote:

 
It is an unusual event. Fortunately.

 
Amen Grin
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Re: KIP10 symptom "suicidal"?
« Reply #3 on: Aug 27th, 2005, 11:16pm »
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on Aug 27th, 2005, 3:17pm, StressFree wrote:
KIP 10, many on a regular or even daily basis.
That is due to the fact that (in my opinion) too many people are not using the KIP scale, properly.  I don't believe ANYONE has KIP 10's every day, or several times a day.  Fortunately, those that say they do, have never had a real KIP 10.  I am NOT saying that these people are not in EXTREME pain.  It is just that a true KIP 10 is truely unique.  In 27 years of dealing with the beast, I have only had 4 or 5 KIP 10's (Thank God!).  Once you have one, you KNOW it!  I have had MANY KIP 9's or even many KIP 9.5's, but true KIP 10's are rare.
 
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Re: KIP10 symptom "suicidal"?
« Reply #4 on: Aug 27th, 2005, 11:18pm »
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It is unusual.....probably because a good supporter will hide the weapons during bad times.  
 
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Re: KIP10 symptom "suicidal"?
« Reply #5 on: Aug 28th, 2005, 2:19am »
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on Aug 27th, 2005, 11:16pm, ClusterChuck wrote:

That is due to the fact that (in my opinion) too many people are not using the KIP scale, properly.  I don't believe ANYONE has KIP 10's every day, or several times a day.  Fortunately, those that say they do, have never had a real KIP 10.  I am NOT saying that these people are not in EXTREME pain.  It is just that a true KIP 10 is truely unique.  In 27 years of dealing with the beast, I have only had 4 or 5 KIP 10's (Thank God!).  Once you have one, you KNOW it!  I have had MANY KIP 9's or even many KIP 9.5's, but true KIP 10's are rare.
 
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Re: KIP10 symptom "suicidal"?
« Reply #6 on: Aug 28th, 2005, 2:37am »
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Oh, you'r funny Chuck!  You really made me chuckle laugh laugh laugh
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Re: KIP10 symptom "suicidal"?
« Reply #7 on: Aug 28th, 2005, 5:45pm »
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I've had one Kip 10 in the 15 yrs I've had clusters.  Just one.  It was back in 2000 and I was in the bathtub filled with water with the shower going at the same time.  I almost made myself go under water.  I don't know what stopped me from doing it, but as I lowered my head to where the water was just starting to get into my nostrils, I began to cry.  I cried because of the pain not only in my head, but in my heart of just how my daughter and husband would feel if they found me there lifeless. Sad  
 
Anyway, I have yet to have another K10.  I've had K9's, just like Chuck (although I don't use the fractions, LOL), but haven't had another 10.... thank GOD.
 
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Re: KIP10 symptom "suicidal"?
« Reply #8 on: Aug 28th, 2005, 6:54pm »
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I may be ahead of the curve, but I've had quite a few Kip 10's.  Yes, you definitely know when you're having one.  Pacing or banging my head is not an option, because I can barely make my legs and arms work at that level.  The pain is far too intense to allow concentration on any kind of physical activity besides rolling, rocking, crawling, etc.  It's even beyond crying or screaming, and it scares the hell out of my wife, who thinks I'm having a stroke at that point.
 
I consider those symptoms a blessing.  It is impossible to follow through on suicidal thoughts at that level of pain.  Even if I could get to a gun, I'd never be able to load it, or aim it properly because my hands tremor so badly.  I cannot drink and can barely swallow (I used to slam or try to slam handfuls of Aleve during hits, but have given that up as completely ineffective and dangerous).
 
I think the danger of suicide lies in between a serious set of clusters in people without any coping or abortive strategies.  My guess is that if it happens, it happens just as yet another cluster is ramping up . . .  Cry
 
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Re: KIP10 symptom "suicidal"?
« Reply #9 on: Aug 28th, 2005, 7:08pm »
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Up until this cycle I had only had two Kip 10's in 24 years.  This cycle I had three Kip 10's almost back to back.  It is rare, but it does happen, and not everyone is misusing the Kip scale or misrepresenting their pain.  
I'm hoping this means this will be the last cycle.  Hope springs eternal.
PFDAN
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Re: KIP10 symptom "suicidal"?
« Reply #10 on: Aug 28th, 2005, 10:07pm »
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During my first episode (32 years ago), I would say that half of the hits were k10s. I didn't have a kip scale though. Since then, I've had quite a few k9s, but never another k10.  
I agree that short of having a gun ready ahead of time, it would be hard to off yourself during a high kip. I've had most of my suicidal thoughts at the beginning of a hit, by the time it's over, I realized I was still alive and could get through another one. Thank goodness I've had children all this time... I could never do that to them.
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Re: KIP10 symptom "suicidal"?
« Reply #11 on: Aug 28th, 2005, 11:26pm »
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Speaking just for myself, as CH affects everyone differently, I think that I may interpret the Kip scale differently for myself.  I am chronic and treatment resistant and after several years of being hit anywhere from 4-6 times a day with the pain being severe, the "life is not worth living" thought occurs frequently with me.  Perhaps what I consider a 10 may actually be a 7 or 8 or 9 for someone else, but after years of having this horrible pain daily, almost all day long and not remembering when I last had a decent night's sleep, my ability to cope with the pain has been eroding.  Somehow I have been able to force myself to go to work, though I have missed a lot of work time without pay, and somehow I am usually able to hold myself together during the day, but when I get home I lose it and collapse mentally and sometimes physically.  I posted that on airline trips, if they are more than an hour or two, I have my doctor give me meds to make me sleep...some doubted that I have chronic CH because we, or most of us, get hit after a nap, but I would rather get hit after the plane lands than have to put up with the constant pain while trapped in the plane 6 miles up.  The only reason that I have not offed myself, yet (tried with a shotgun once, changed my mind and blew a big hole in my living room door with 12 gauge solid shot) is that I do think of the effect that it would have on loved ones and also because I keep hoping that someday either I'll get a remission or find a medication or operation that will help.  To me, what is most horrible about CH is not the pain but the deterioration in my quality of life-can't make plans because I never know when I'll get hit and have to cancel, can't enjoy wine anymore (stopped drinking years ago-a trigger for me) and the bullshit that most of us have to put up from those ignorant of the illness-"just a headache", "Oh, I know what you mean, I have migraines" and my favorite:  "Are you sure that they are not stress related?". not to mention those who don't think you have anything wrong with you because, aside from the droopy eye, they don't see anything-I want to kill when I hear that stuff.  The KIP scale is great, but I imagine that we all interpret it differently and think that we should accept each person's rating of where they think they are on the scale, for pain, physical and emotional, is a very individual thing.  PFDANs and Peace.
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Re: KIP10 symptom "suicidal"?
« Reply #12 on: Aug 29th, 2005, 7:37am »
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I don't know that a cluster headache has ever made me feel suicidal, but I have been to the point of pain, where I feel like an animal in a trap, gnawing its own leg off... A Kip 10, for me, is when the pain is no longer localized to the eye, but begins to radiate down my jaw and the back of my neck, and I can feel it in my molars.
 
As for thoughts of suicide: It's not the pain that brings on the thoughts of suicide, because to me, suicide would not be an impulsive thing. I know the pain will go. As morbidly fascinating and vivid as the imagery is, of someone screaming in pain and then killing themselves, I think the reality is a little different. The thing that brings on suicidal thoughts, is the ninth week of a cycle, when I'm sooo exhausted, still getting slammed, and when I'm running on empty. I have no more energy to fight, no more willingness to resist, and I've been without sleep for days and days.... One day melts into the next, and each day feels like just another nightmare of pain. Those are the times when the only thing that keeps me here, is the fact that my wife and daughter depend on me. If I were on my own and by myself, I would be a statistic. I'm not trying to be dramatic; just stating the facts.
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Re: KIP10 symptom "suicidal"?
« Reply #13 on: Aug 29th, 2005, 8:35am »
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Quote:
Speaking just for myself, as CH affects everyone differently, I think that I may interpret the Kip scale differently for myself.  I am chronic and treatment resistant and after several years of being hit anywhere from 4-6 times a day with the pain being severe, the "life is not worth living" thought occurs frequently with me.  Perhaps what I consider a 10 may actually be a 7 or 8 or 9 for someone else,

 
That is what I was thinking... Even though the pain is severe for everyone, we all deal with it differently and the amount of pain we can handle is all different between us.
 
I have been chronic for a little over three years, resistant to medications as well and my 'dealing' with it is defintly not like that of others... I am not as good at it. Maybe in time but I dont know...
 
As far as the KIP scale goes - if I do it according to that - than I have had KIP 10's everyday... Those ones where I bang my head on anything and everything, beg to die, scream in pain and sometimes end up at the ER. The ones that are too painful for me to handle.. They may not come as often now or maybe I am dealing with them better but they still come.... and more than others have mentioned.
 
So what is the difference between us? We surely cant compare pain levels because you cant know my pain and I cant know yours since only us individuals experience it. But we can see our coping skills, to what level we 'give' into the pain and so forth.. I think that is what makes us vary.
 
Quote:
I don't believe ANYONE has KIP 10's every day, or several times a day.

 
Just to add one more thing, I dont think that this is fair to say or accurate by any means. I know what a KIP 10 is and I have had more than my share of them and they do come everyday. Maybe not so much now but they have...We can go saying that this doesnt happen or that doesnt happen becaus e it does.. Doctors are bad enough at doing this!
 
Just my thoughts - hope that they make sense.
 
Jill[
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Re: KIP10 symptom "suicidal"?
« Reply #14 on: Aug 29th, 2005, 9:44am »
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Certainly this is a subject that must be discussed, it just bothers me a little that a new-comer's first point of conact with our board is 'Cluster Headache Specific'.
 
The reigning threads here are "Kip10 Sympton Suicidal"  (27 Aug) along with "Suicide & CH/Migraine Patients" posted 18 Aug and now up to it's 6th page!
 
Never-ever to detract from the importance of the subject, rare as it appears to be, I can't help wondering if perhaps there might not be a better place to discuss it.
 
Purely for the sake of our incoming friends, you understand.   Reckon they might be scared enough already.
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Re: KIP10 symptom "suicidal"?
« Reply #15 on: Aug 29th, 2005, 10:31am »
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on Aug 28th, 2005, 11:26pm, CHTom wrote:
my ability to cope with the pain has been eroding.  I lose it and collapse mentally and sometimes physically.

 
Your descriptions pulled at my heartstrings.  I hope you find your fix even if it's for a day.  I was exactly where you are although it was several years ago.  I felt and looked like a drooling idiot due to the many hits, day and night.  Worrying about work, meds, dealing with the inadequacy of doctors, people, and life in general.  
 
Bless you,  I hope you find relief.  I'm sure you've tried every avenue.  I stopped all meds and got sinus surgery brought me 2 yrs. PF and now I'm just episodic.  Thank God!
 
Yes,  I've too noticed KIP 10's are overated on some posts and to some they may be actually a KIP 10.  In my experience I can relate to only a few hits that actually prompted a note tagged to me (inbetween times) saying 'if found, please call'. Sad but true.  
 
Wishing everyone PFDAN's.  Rest to all.
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Re: KIP10 symptom "suicidal"?
« Reply #16 on: Aug 29th, 2005, 1:18pm »
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on Aug 29th, 2005, 9:44am, AussieBrian wrote:
Certainly this is a subject that must be discussed, it just bothers me a little that a new-comer's first point of conact with our board is 'Cluster Headache Specific'.
 
The reigning threads here are "Kip10 Sympton Suicidal"  (27 Aug) along with "Suicide & CH/Migraine Patients" posted 18 Aug and now up to it's 6th page!
 
Never-ever to detract from the importance of the subject, rare as it appears to be, I can't help wondering if perhaps there might not be a better place to discuss it.
 
Purely for the sake of our incoming friends, you understand.   Reckon they might be scared enough already.

 
This post is being put up with the knowledge that it may offend. That is not my intent, by any means. I’m not trying to stir up shit needlessly. My intent is to examine the question of if there does reach a point where we have to examine how we’re communicating with each other on some of these sensitive topics.  
 
I think Brian makes an excellent point regarding new visitors to our forum, and possibly the first thing they read is about “when was the last time you thought about suicide?” It gives a serious subject the tone of “when was the first time you kissed a boy?” First of all the subject has been done to death (no disrespect intended), secondly it has been largely dismissed from most posters as irrelevant as only a couple people are actually aware of anyone who has actually done it as a result of Cluster Headache and relatively few have actually seriousl pondered it, probably no greater than a population with properly functioning hypothalamuses.
 
But, like moths to a flame the thread goes up and we’re drawn because some doctor at some point coined the term for our headache. And we think about it, and think about our greatest moments of despair. And then we creep into the zone where we ponder “if I was chronic, I’d….” (Which, for those of you who’ve shared that concern with our chronic brothers and sisters on the boards, think about that for a moment.)
 
While this is one of the few places where we can share our despair, our victories, our concerns, we should still show a little care. Particularly in those areas which are devoted to actual Cluster discourse. We should still think about everyone who might read and how it might be taken. We should think about what is good for this community, not just what is the first thing that shoots through our keyboard.
 
I can’t say that I’m perfect in this regard (at all). But, I can tell you that when it comes to the Cluster Specific and Medications threads I’ve tried to treat serious discussions with some respect. (and probably not always for anyone that wants to jump on me for anything I’ve posted in my time here.)  This thread and others recently do have me thinking some though, and I guess that’s what I’m trying to say, is to try and step outside of the natural self-absorption that can take place with CH and be more thoughtful about some of these serious subjects.
 
Scott
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Re: KIP10 symptom "suicidal"?
« Reply #17 on: Aug 29th, 2005, 1:40pm »
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Scott and Bran (and others)..
 
This subject, in my mind, is an important one if anything to remind us that no matter how desperate we are, we still fight. And that is important for new comers to understand.. if that makes sense.
 
I think that the idea behind the KIP scale, rating 10 to be exact, is that when we are in attack of that severity, we beg to die and beg for it to end. That is one thing - what others have mentioned is something different and that is actually acting out those thoughts when we are able to think straight. That is when the reminders that we have family, responsibilites and so forth kicks in and the thought of wanting to end it goes away. Does that make sense?
 
This is an important topic and maybe no so much for episodics as they know it will end but for chronics, atleast in my eyes. There are many days when I lay down at night and wonder if I want to wake up in the morning to face another day of these headaches and many times when I wonder if it is all worth it since there seems to be no end in sight. And during those bad hits, it is good that I have support and I cant function to do anything that is too harmful besides banging my head..Guess that is the good part of being in too much pain.. if there is a good part.
 
The important thing here is that I would never do anything because of that support... that is what is so key for newcomers to learn. We can do it and how important support is.
 
And besides, what other place is there to discuss this than with other sufferers under the clusterhead one... better to talk it out than to act on it.
 
Just my two cents worth. Hope that it made sense.
 
Jill
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Re: KIP10 symptom "suicidal"?
« Reply #18 on: Aug 29th, 2005, 3:11pm »
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on Aug 29th, 2005, 1:40pm, Jill wrote:
This is an important topic and maybe no so much for episodics as they know it will end but for chronics, atleast in my eyes.

 
You would be wrong, Jill. It may even be worse for episodics in some respects -- We're forever waiting for "the other shoe to drop." It's like living with an anvil hanging overhead, never knowing when the tiny piece of fishing line is going to snap. Just like chronics: When in cycle, we're always wondering when the next one is going to hit, where we're going to be, how bad it's going to be, and how long it's going to last. Then there's the wondering if the cycle has truly started or truly ended, and how long the cycle is going to be.
 
To reiterate: I don't think it's the pain itself, as much as it is, the fear and dread and lack of sleep and the medications and the idiocy of most of our care providers and insurance companies, the missed days of work, and the way we get psychologically and spiritually beaten down.
 
My two cents' worth...
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Re: KIP10 symptom "suicidal"?
« Reply #19 on: Aug 29th, 2005, 3:31pm »
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I don't know what I do when I have a 10, I can't think or concentrate, lots of beating and banging and screaming.  I'm sure it's an ugly sight, but I can agree with Chuck, they have been rare for me as well.  Thank God.
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Re: KIP10 symptom "suicidal"?
« Reply #20 on: Aug 29th, 2005, 3:46pm »
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Hey Frank...
 
I miswrote that, sorry... I am just not thinking straight right now..
 
I didnt mean to say that the pain or the fear and all that is worse for chronics than for episodics - I know what it is like to fear the next hit but I cant imagine what it is like to fear the next episode. We cant compare pain levels anymore than we can compare which is worse... I am sorry to make it sound that way.
 
That being said, what I was trying to say in some sort of way was that the suicide thoughts may have something to do with being chronic versus episodic... I am speaking from personal experience here - having them everyday without a break for months, years on end takes a toll on the mental capacity of people. I think getting a break, even though the fear of it coming back is there, gives you a chance to build up that strength for the next round which is what I need. Does that make sense?
 
I am sorry if I miswrote before or now - I am not trying to say that chronics have it worse than episodics because there is no comparison. It is, as you say, how we deal with it.  
 
Again, hope that this makes sense.
 
Jill
 
Add - I just read this and I still think that it came out wrong - I know what I want to say but not sure how to write it.... sorry
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Re: KIP10 symptom "suicidal"?
« Reply #21 on: Aug 29th, 2005, 4:04pm »
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No... Jill, I understand what you mean, now. And I've occasionally said that if I tripped over to being chronic, I might very well take a bath with my toaster oven. This shit just wears us down until we're running on empty...
 
Hang in there. hug
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Re: KIP10 symptom "suicidal"?
« Reply #22 on: Aug 29th, 2005, 4:09pm »
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    Quote:
Pain level 0
No pain, life is beautiful
Pain level 1
Very minor, shadow's come and go. Life is still beautiful
 
Pain level 2
More persitent shadow's
 
Pain level 3
Shadow's are getting constant but can deal with it
 
Pain level 4
Starting to get bad, want to be left alone
 
Pain level 5
Still not a "pacer" but need space
 
Pain level 6
Wake up grumbling, curse a bit, but can get back to sleep with out "dancing"
 
Pain level 7
Wake up, sleep not an option, take the beast for a walk and finally fall into bed exhausted
 
Pain level 8
Time to scream, yell, curse, head bang, rock, whatever work's
 
Pain level 9
The "Why me?" syndorme starts to set in
 
Pain level 10
Major pain, screaming, head banging, ER trip. Depressed. Suicidal.
 
 

 
 
   I personally have had a lot of these and I am NOT mis-reading the scale either.  
 
 
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  Worldshots2003   FarmerGJill
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Re: KIP10 symptom "suicidal"?
« Reply #23 on: Aug 29th, 2005, 4:24pm »
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Thanks Frank -
 
I dont want to offend anyone or diminish anyone's pain... I am glad that you understand what I mean. That makes me feel better..   Wink And thanks!
 
And you are right, no matter what, it does where us down. And we all hate it.. and we are survivors. Sorry, needed to remind myself of that!
 
And Linda, I am glad that I am not the only one who has had alot of them.. was wondering what was going on there. Hope all is well and you had a good trip.
 
Jill
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"If you learn from your suffering and really come to understand the lesson you were taught you might be able to help someone else who is now in the phase. Maybe that is what its all about after all.."
tenacious
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Re: KIP10 symptom "suicidal"?
« Reply #24 on: Aug 29th, 2005, 7:12pm »
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I think this is perhaps the only appropriate place to discuss this.
 
We are all newbies when we first arrive.  We all read the Kip scale very early on.  It is one of the diagnostic tools we come here looking for in the first place.  
 
Suicidal thoughts and feelings at the K10 level are part of what differentiate my HAs from migraines.  It is a part of the CH experience many of us share.
 
How it affects newbies depends largley on whether  or not they've been there.  It may be scary to those who haven't yet, but personally, I found it comforting.  It is part of what we recognize about each other.  It is part of what makes us a community.  
 
That suicidal thoughts and feelings, as well as excuciating pain can be survived is part of what newbies need to hear.  There is a big difference between thoughts, feelings and actions.  That fact is what keeps most of us alive when the pain is at its worst.  And since some of us, for whatever reasons, choose not to frequent the other boards, if it is not discussed here, we may never see it discussed.  Our questions (unless we choose to post them [ironically, that would be here]) would go unanswered.
 
That said, I agree we should show some sensitivity and think before we post.  This thread is getting pretty long and parts of it may not be all that helpful to firs-time visitors.
 
BTW  I am grateful to say that my K10s (I personally count anything excruciating enough to give me a suicidal thought) are few and far between.  They do not include my molars hurting, and experience allows me to just wish I were dead, rather than seriously contemplating suicide.  It is hard, but I know the pain can be endured.
 
PS  I like the term "suicide headache" for two reasons.  First, CH makes us feel suicidal even though most of us never act on it.  Second, I like to think it makes people sit up and take notice rather than say "It's just a headache."
 
« Last Edit: Aug 29th, 2005, 7:33pm by tenacious » IP Logged

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