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Topic: Cluster induced PTSD (Read 2591 times) |
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floridian
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Was just in the anxiety thread where someone said they have been pain-free going on 3 years, and they still think about it clusters every day. Not surprising.
What is surprising is that no one in the medical community seems to recognize cluster headache induced post traumatic stress disorder. And some people here kinda recognize it, although that term is not widely used.
What is PTSD? A group of measurable changes to the brain and endocrine functioning that occur after a traumatic event.
These changes can persist for years, depending on the individual - their genetics, their life circumstances, the treatment they get or dont get, etc.
Sometimes it goes away on its own. Sometimes it affects a person's ability to function and hold down a job, raise a family, or take care of themselves.
Is there cluster headache induced PTSD? I would be surprised if there wasn't, and I suspect it is fairly common - maybe 20 or 30% of people that get hit hard. Which is to say about 20 or 30% of people with clusters.
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George_J
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Re: Cluster induced PTSD
« Reply #1 on: Dec 21st, 2006, 8:56am » |
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Not saying yes or no, since I simply don't know how one would define what constitutes PTSD as a consequence of experiencing CH, as opposed (or contrasted) to simple anxiety or aversion--which I think are nearly universal reactions to CH. Obviously PTSD resulting from CH would be more extreme--but would it differ from anxiety or aversion in some qualitative way as well?
If measurable changes occur, how are they measured, and what do they consist of? I don't know. This is nothing more than simple ignorance on my part.
There is no question that people react differently to the event of CH, just as they react in different ways to other events that are intense, painful, or life-altering. Certain personality types, I understand, may be more vulnerable to PTSD, and those (if I am not mistaken) can be identified and/or predicted.
So--does PTSD as a consequence of CH exist? If so, how would it be identified? If it does exist, who is vulnerable, and how are they identified? If identified, what is appropriate treatment?
Best wishes,
George
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TonyYZF
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Re: Cluster induced PTSD
« Reply #2 on: Dec 21st, 2006, 12:49pm » |
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Floridian,
Very interesting concept. I don't think I have considered it until you mentioned it. I know that I find myself obsessing about my CH daily. Granted I have not gone into remission so I am given reminders in the way of shadows every day. I have a obsessive personality anyway, so my dwelling on the matter may just be a personality thing like George alluded to. Hard to gauge whether my personality type would be more susceptible, my circumstances drive my reaction or this is simply my natural reaction. Either way, the difficulty in quantifying and/or establishing a baseline by which to judge if one has a PTSD reaction seems a bit overwhelming to me...of course if I have PTSD, maybe it just seems overwhelming to me...sorry just kidding. Still an interesting concept.
Tony
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BobG
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Re: Cluster induced PTSD
« Reply #3 on: Dec 21st, 2006, 1:28pm » |
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PTSD? Is there really such a thing? I think it's more a catch-all phrase that overused, if it even exists.
The term PTSD was invented in the 1970's as a replacement for battle fatigue and a scam to set up treament 'clinics' to steal money from the taxpayer of million$ to treat make believe symptoms.
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seasonalboomer
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Re: Cluster induced PTSD
« Reply #4 on: Dec 21st, 2006, 1:41pm » |
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Or, by virtue of the CH sufferer's incredible tolerance to traumatic pain, would CH sufferers have a far lower likelihood of experiencing PTSD?
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Re: Cluster induced PTSD
« Reply #5 on: Dec 21st, 2006, 2:32pm » |
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on Dec 21st, 2006, 1:28pm, BobG wrote:PTSD? Is there really such a thing? I think it's more a catch-all phrase that overused, if it even exists.
The term PTSD was invented in the 1970's as a replacement for battle fatigue and a scam to set up treament 'clinics' to steal money from the taxpayer of million$ to treat make believe symptoms. |
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After a very serious assult March 17 1998 (and another traumatic event of June that same year), I suffered quite severe PTSD for nearly a year. Even after he was finally convicted and in prison, the effects still lingered, however to a lesser degree.
Some of the worst symptoms were cold sweat anxiety attacks from strange noises or quick unexpected movements from people near me. Sleep walking episodes 2 or 3 times a month where I would find myself in my basement. I had to cancel my home phone because he still had people calling me for him, and I wouldn't be able to function for days. I'd bawl for hours out of nowhere.
This exists Bob...with enough support from my therapist and a very empathetic lawyer at the time I recovered quickly all things considered.
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E-Double
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Re: Cluster induced PTSD
« Reply #6 on: Dec 21st, 2006, 2:48pm » |
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http://www.mental-health-today.com/ptsd/dsm.htm
309.81 DSM-IV Criteria for Posttraumatic Stress Disorder
A. The person has been exposed to a traumatic event in which both of the following have been present:
(1) the person experienced, witnessed, or was confronted with an event or events that involved actual or threatened death or serious injury, or a threat to the physical integrity of self or others (2) the person's response involved intense fear, helplessness, or horror. Note: In children, this may be expressed instead by disorganized or agitated behavior.
B. The traumatic event is persistently reexperienced in one (or more) of the following ways:
(1) recurrent and intrusive distressing recollections of the event, including images, thoughts, or perceptions. Note: In young children, repetitive play may occur in which themes or aspects of the trauma are expressed.
(2) recurrent distressing dreams of the event. Note: In children, there may be frightening dreams without recognizable content.
(3) acting or feeling as if the traumatic event were recurring (includes a sense of reliving the experience, illusions, hallucinations, and dissociative flashback episodes, including those that occur upon awakening or when intoxicated). Note: In young children, trauma-specific reenactment may occur.
(4) intense psychological distress at exposure to internal or external cues that symbolize or resemble an aspect of the traumatic event.
(5) physiological reactivity on exposure to internal or external cues that symbolize or resemble an aspect of the traumatic event.
C. Persistent avoidance of stimuli associated with the trauma and numbing of general responsiveness (not present before the trauma), as indicated by three (or more) of the following:
(1) efforts to avoid thoughts, feelings, or conversations associated with the trauma
(2) efforts to avoid activities, places, or people that arouse recollections of the trauma
(3) inability to recall an important aspect of the trauma
(4) markedly diminished interest or participation in significant activities
(5) feeling of detachment or estrangement from others
(6) restricted range of affect (e.g., unable to have loving feelings)
(7) sense of a foreshortened future (e.g., does not expect to have a career, marriage, children, or a normal life span)
D. Persistent symptoms of increased arousal (not present before the trauma), as indicated by two (or more) of the following:
(1) difficulty falling or staying asleep
(2) irritability or outbursts of anger
(3) difficulty concentrating
(4) hypervigilance
(5) exaggerated startle response
E. Duration of the disturbance (symptoms in Criteria B, C, and D) is more than one month.
F. The disturbance causes clinically significant distress or impairment in social, occupational, or other important areas of functioning.
Specify if:
Acute: if duration of symptoms is less than 3 months
Chronic: if duration of symptoms is 3 months or more
Specify if:
With Delayed Onset: if onset of symptoms is at least 6 months after the stressor
[b][/b]
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| « Last Edit: Dec 21st, 2006, 2:49pm by E-Double » |
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floridian
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on Dec 21st, 2006, 1:28pm, BobG wrote:PTSD? Is there really such a thing? I think it's more a catch-all phrase that overused, if it even exists.
The term PTSD was invented in the 1970's as a replacement for battle fatigue and a scam to set up treament 'clinics' to steal money from the taxpayer of million$ to treat make believe symptoms. |
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Battle-fatigue doesn't describe the same thing. PTSD is more than being tired, and it doesn't go away with a little R&R.
The military opposed any change in thinking about this topic, because they would lose some soldiers that really had this, and some that just wanted out. So they argued for 'common sense' test - if you have all your limbs, if you don't carry shrapnel or have stitched up bullet wounds, then you were not physically affected.
Thanks for digging up the diagnostics, E^2. That is what is used in 99% of the diagnoses. There are functional image scans and biochemical tests that were used to establish the reality of the disease, but which are not often used in day to day diagnosis.
Quote:PTSD displays biochemical changes in the brain and body, which are different from other psychiatric disorders such as major depression.
In PTSD patients, the dexamethasone cortisol suppression is strong, while it is weak in patients with major depression. In most PTSD patients the urine secretion of cortisol is low, at the same time as the catecholamine secretion is high, and the norepinephrine/cortisol ratio is increased. Brain catecholamine levels are low, and corticotropin-releasing factor (CRF) concentrations are high. There is also an increased sensitivity of the hypothalamic-pituitary-adrenal (HPA) axis, with a strong negative feedback of cortisol, due to a generally increased sensitivity of cortisol receptors (Yehuda, 2001).
The response to stress in PTSD is abnormal with long-term high levels of norepinephrine, at the same time as cortisol levels are low, a pattern associated with facilitated learning in animals. Translating this reaction to human conditions gives a pathophysiological explanation for PTSD by a maladaptive learning pathway to fear response (Yehuda 2002). With this deduction follows that the clinical picture of hyperreactivity and hyperresponsiveness in PTSD is consistent with the sensitive HPA-axis.
Swedish United Nations soldiers serving in Bosnia with low pre-service salivary cortisol levels had a higher risk of reacting with PTSD symptoms, following war trauma, than soldiers with normal pre-service levels (Aardal-Eriksson 2001).
Neuroanatomy
In animal research as well as human studies, the amygdala has been shown to be strongly involved in the formation of emotional memories, especially fear-related memories. Neuroimaging studies in humans have revealed both morphological and functional aspects of PTSD. The amygdalocentric model of PTSD proposes that it is associated with hyperarousal of the amygdala and insufficient top-down control by the medial prefrontal cortex and the hippocampus. Further animal and clinical research into the amygdala and fear conditioning may suggest additional treatments for the condition.
(wikipedia) |
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purpleydog
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Re: Cluster induced PTSD
« Reply #8 on: Dec 21st, 2006, 7:00pm » |
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PTSD does exist. I lived with it for years since I was a child, and then I had a traumatic episode also in my very late teens. It took me years to get over it.
As far as PTSD associated with CH, when I was episodic, and in cycle, I lived in fear of getting hit. Especially after the cycle got really going. They would last a min of 4 months, and I would get hit HARD, and long. At the time, no meds were working. Every time I had a sign a hit was coming on, I'd get scared, worried, and became very aware of my surroundings, trying to think of how to stop it (get away). Even for a couple months or so after the cycle ended. There were other reactions too, but I think it exists.
I am now chronic, and have the hits under control somewhat. But when I go into a "cycle" that lasts more than a week, the same thing happens. It's not as severe, because I have learned to live with it much better. But it is still there.
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BobG
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Re: Cluster induced PTSD
« Reply #9 on: Dec 21st, 2006, 7:31pm » |
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on Dec 21st, 2006, 3:07pm, floridian wrote:
Battle-fatigue doesn't describe the same thing. PTSD is more than being tired, and it doesn't go away with a little R&R.
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The word fatigue in battle fatique has nothing to do with being tired. And thinking R&R means rest, think again. I went on R&R and came back more tired (and hung over) than ever.
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Linda_Howell
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Re: Cluster induced PTSD
« Reply #10 on: Dec 21st, 2006, 7:43pm » |
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oh God, I pray... let me hold my typing fingers
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FramCire
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Re: Cluster induced PTSD
« Reply #11 on: Dec 21st, 2006, 9:27pm » |
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on Dec 21st, 2006, 7:43pm, Linda_Howell wrote:
oh God, I pray... let me hold my typing fingers |
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I'd hold them for you but unfortunately my wife might get jealous. Do you do any crafts instaed?
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Jonny
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Re: Cluster induced PTSD
« Reply #12 on: Dec 21st, 2006, 9:53pm » |
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on Dec 21st, 2006, 6:47am, floridian wrote:
What is PTSD? A group of measurable changes to the brain and endocrine functioning that occur after a traumatic event. |
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Oh My!
I guess im fucked for life, 30 od years chronic.......LMMFAO 
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Re: Cluster induced PTSD
« Reply #13 on: Dec 21st, 2006, 9:57pm » |
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on Dec 21st, 2006, 9:53pm, Jonny wrote:
Oh My!
I guess im fucked for life, 30 od years chronic.......LMMFAO
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I've read that beer counteracts those endocrinetic effects.
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Mr. Happy
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Re: Cluster induced CUJP
« Reply #14 on: Dec 22nd, 2006, 12:22am » |
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PTSD's been overused, and had too much press.
CUJP
Complete and Utterly Justifiable Paranoia. Works for me. Carry a pocket triptan 24/7/365 since '02, and never had to use it. That's paranoid enough for me.
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Re: Cluster induced CUJP
« Reply #15 on: Dec 22nd, 2006, 4:17am » |
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on Dec 22nd, 2006, 12:22am, Mr. Happy wrote:PTSD's been overused, and had too much press.
CUJP
Complete and Utterly Justifiable Paranoia. Works for me. Carry a pocket triptan 24/7/365 since '02, and never had to use it. That's paranoid enough for me.
CUJP.
Hap (Hopelessly Always Paranoid) |
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Me too - I'm over 4 years PF but visit this board almost daily - so I still think about my CH most days.
I am constantly on the lookout for any signs of a cycle about to start - even the smallest headache can get me fired up and ready to take evasive action - my Detox plan is always at the ready if need be 
You have to remain vigilant with this bastard as it can strike when you are not looking and least expect it.
I am flying to the England tommorow for Christmas to see my family, and guess what is at the top of my list of things to take?
My imigran injection kit (expiry dated June 2003) "just in case"
And Brewcrew - I am looking forward to drinking lots of Real English Ale while I'm there, yum
John
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floridian
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Re: Cluster induced PTSD
« Reply #16 on: Dec 22nd, 2006, 9:05am » |
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on Dec 21st, 2006, 9:53pm, Jonny wrote:
Oh My!
I guess im fucked for life, 30 od years chronic.......LMMFAO
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Not at all. Some people walk through the fire unscathed. Others get heat stroke when its 95 degrees.
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| « Last Edit: Dec 22nd, 2006, 9:24am by floridian » |
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Bob_Johnson
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Re: Cluster induced PTSD
« Reply #17 on: Dec 22nd, 2006, 11:03am » |
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The idea of PTSD in cluster folks is interesting but I'm highly cautious about applying this concept to us unless there is some good research to support the move. I could only find one decent research piece as PTSD might apply to a medical condition (here, breast cancer). Most of the positive reports I found involved civilians involved in trauma (accident, crime, earthquake, etc.) where you would expect a higher rate.
If disease was a trigger for PTSD I should have expected to see more research reports show the effect since these kinds of medical problems (chronic cancer, major physical trauma, etc.) have been a part of lives forever. (Yes, I grant that this is a new concept being applied to a new population and so not much research yet. But....)
There is, however, a very significant body of research linking various medical problems to anxiety conditions and depression. These conditions are not to be confused with PTSD (see the message with the diagnostic criteria for PTSD.) I've tried to address this link and how we can buffer ourselves in an article found at: http://www.ouch-us.org/chgeneral/painvsuffering.htm .
A big body of research in psychology focuses on individuals who see themselves as relatively powerless to cope with problems vs. people who believe that they have reasonably effective ways of handling these stressors. As you might expect, the second group tend to develop less anxiety/depression--regardless of the source of the stress.
It's this perspective which leads me to reject the label of "victim" or "sufferer" as it applies to either my experience with cluster or cancer. These, essentially, negative labels only create negative emotions which drain our coping powers. But now we have some powerful research which proves that it's possible to learn how to alter our thinking/emotional responses to distressing situations, reducing the possibility of disabling emotional & behavioral responses.
(I'm writing here about coping with CH. None of this is applies to what is happening our folks in Iraq or to any like situation.)
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George_J
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Re: Cluster induced PTSD
« Reply #18 on: Dec 22nd, 2006, 11:31am » |
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on Dec 22nd, 2006, 11:03am, Bob_Johnson wrote:The idea of PTSD in cluster folks is interesting but I'm highly cautious about applying this concept to us unless there is some good research to support the move.
<snip>
If disease was a trigger for PTSD I should have expected to see more research reports show the effect since these kinds of medical problems (chronic cancer, major physical trauma, etc.) have been a part of lives forever.
<snip>
It's this perspective which leads me to reject the label of "victim" or "sufferer" as it applies to either my experience with cluster or cancer. |
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In light of this excellent post by Bob, and considering the diagnostic criteria for PTSD submitted by Eric (thank you, Eric), I'm growing doubtful whether cluster-induced PTSD actually exists--although it is clear that there is differential experience with anxiety, depression, aversion and fear of CH.
I'd like to see persuasive evidence to the contrary.
Bob's reluctance to use the labels "victim" or "sufferer" in connection with his own experience with CH also struck a chord with me. I have always considered myself to be a person who happens to have CH--which has certain consequences--but do not refer to myself as a "victim" or "sufferer".
Interesting thread.
Best wishes,
George
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| « Last Edit: Dec 22nd, 2006, 11:32am by George_J » |
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Ah! The foreigners put on such airs
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The pain they inspire
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It all comes to light in the sheer
Debonair.
(Ellen)
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floridian
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Re: Cluster induced PTSD
« Reply #19 on: Dec 22nd, 2006, 4:11pm » |
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on Dec 22nd, 2006, 11:03am, Bob_Johnson wrote:
There is, however, a very significant body of research linking various medical problems to anxiety conditions and depression. These conditions are not to be confused with PTSD (see the message with the diagnostic criteria for PTSD.) I've tried to address this link and how we can buffer ourselves in an article found at: http://www.ouch-us.org/chgeneral/painvsuffering.htm .
A big body of research in psychology focuses on individuals who see themselves as relatively powerless to cope with problems vs. people who believe that they have reasonably effective ways of handling these stressors. As you might expect, the second group tend to develop less anxiety/depression--regardless of the source of the stress.
It's this perspective which leads me to reject the label of "victim" or "sufferer" as it applies to either my experience with cluster or cancer. These, essentially, negative labels only create negative emotions which drain our coping powers. But now we have some powerful research which proves that it's possible to learn how to alter our thinking/emotional responses to distressing situations, reducing the possibility of disabling emotional & behavioral responses.
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I agree fully that a postive mental attitude offers a good deal of protection from depression, anxiety, etc. No side effects, which makes it the place to start - though it may not be enough.
Reject the label of 'sufferer' for people with clusters? No, not me - if the pain of clusters doesn't cause suffering, then maybe they are no big deal. Making a distinction between pain and suffering is good, but the two cannot always be separated. Positive thinking and changing what we call things is fine, but it can be taken too far. People are free to describe the world as they wish, but objectively, people do suffer when intense pain.
If a K9 or K10 is not traumatic, please tell me what is.
I would suggest that the definition of PTSD does apply to some people with clusters, although the definition was written with external events in mind. From a biological perspective, I see the causes of intense or persistent fear/anxiety as less important than the fact that these cause similar changes to the body. And I also believe that some develop a Post-Intense-Pain-Syndrome, even if there is nothing in the literature.
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| « Last Edit: Dec 22nd, 2006, 4:14pm by floridian » |
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BMoneeTheMoneeMan
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Re: Cluster induced PTSD
« Reply #20 on: Dec 22nd, 2006, 7:30pm » |
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I guess we could argue about what PTSD is, but I think I definately suffer from it. My last cycle ended in August and it took me until December to get my head working well again. Couldnt concentrate, had no motivation, needed lots of sleep (8 hours) and was just in a daze.
I dont think the PTSD would be caused from the pain, but probably from the emotional toll it takes. Course, I am not Dr MoneeMan, but thats my 
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Opus
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Re: Cluster induced PTSD
« Reply #21 on: Dec 25th, 2006, 12:34pm » |
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on Dec 21st, 2006, 1:28pm, BobG wrote:PTSD? Is there really such a thing? I think it's more a catch-all phrase that overused, if it even exists.
The term PTSD was invented in the 1970's as a replacement for battle fatigue and a scam to set up treament 'clinics' to steal money from the taxpayer of million$ to treat make believe symptoms. |
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No, it is a term for a condition AKA "Shell shock". It was first seen in WWI when war took on horrors never seen before.
I'm sure with any illness there is miss diagnoses and fraud. That doesn't make it not a real problem for some peaple.
I'm sure I don't have it. I can't remember what a 10 is like, and when it does happen the pain is always a shock.
Paul
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Kevin_M
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Re: Cluster induced PTSD
« Reply #22 on: Dec 25th, 2006, 3:32pm » |
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on Dec 25th, 2006, 12:34pm, Opus wrote:| No, it is a term for a condition AKA "Shell shock". It was first seen in WWI when war took on horrors never seen before. |
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There are perhaps relatable similarities but "shell shock" would be different, catatonic incapacity being inclusive.
It could be perfectly normal for combatants to suffer muscular tension, freezing, shaking and tremor, excessive perspiration, anorexia, nausea, abdominal distress, diareah, urinary frequency, incontinence of urine or feces, abnormal heartbeat, breathlessness, a burning sense of weight oppressing the heart, faintness and giddiness. These can be normal autotomic responses to fear. Of course this is from the "Bulletin of the United States Army Medical Department" by Lt. Col. Stephen W. Ranson, chief of 7th Army Psychiatric Center.
The (WWI) Western Front experienced the phenomenon of "shell shock" trapped in trenches but not on the Eastern Front among Russians and Austrians where movement for "fight or flight" was available under artillery fire. The Battle of the Somme (Western) was notorious for many cases the English have well documented.
In any event similar cases of PTSD would not be new to the 20th century, people stayed for months in many spas throughout Europe for an older term of "hysteria", and later "neurasthania", again, with distinctions and similarities.
on Dec 21st, 2006, 2:48pm, E-Double wrote:| B. The traumatic event is persistently reexperienced... |
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I was surprised to find the Freudian observation  from "shell shock" related from a behaviorist, re-experiencing the situation to confront it again.
I just had to Eric.
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| « Last Edit: Dec 25th, 2006, 6:14pm by Kevin_M » |
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Racer1_NC
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Re: Cluster induced PTSD
« Reply #23 on: Dec 25th, 2006, 5:04pm » |
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on Dec 22nd, 2006, 7:30pm, BMoneeTheMoneeMan wrote:I guess we could argue about what PTSD is, but I think I definately suffer from it. My last cycle ended in August and it took me until December to get my head working well again. Couldnt concentrate, had no motivation, needed lots of sleep (8 hours) and was just in a daze.
I dont think the PTSD would be caused from the pain, but probably from the emotional toll it takes. Course, I am not Dr MoneeMan, but thats my |
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You are not alone. Happens to me too......
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"Everybody's Gotta Learn Sometime."
Eventus stultorum magister.
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E-Double
CH.com Alumnus
New Board Hall of Famer
Are we ourselves?
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Posts: 6458
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Re: Cluster induced PTSD
« Reply #24 on: Dec 25th, 2006, 6:43pm » |
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on Dec 25th, 2006, 3:32pm, Kevin_M wrote:
I was surprised to find the Freudian observation from "shell shock" related from a behaviorist, re-experiencing the situation to confront it again.
I just had to Eric. |
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How is that psychoanalytic??
Side-note and sorry if hijacking....I recently had to lecture to a few hundred NY board of ed psychologists...most of them being psychoanalysts...I was able to put the entire Oedipal conflict into Behavioral perspective... wa quite fun
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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