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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> Suicide and CH/Migraine Patients
        
(Message started by: franticCH on Aug 18th, 2005, 10:50pm)
Title: Suicide and CH/Migraine Patients
Post by franticCH on Aug 18th, 2005, 10:50pm
I once read an article that stated that the statistics of suicide for Clusterheads and Migraineurs was around 18%, but I can't remember where I read it.  Any ideas?  Has anyone read about the statistics for our disease?

Thanks
Title: Re: Suicide and CH/Migraine Patients
Post by E-Double on Aug 18th, 2005, 11:03pm
No clue but I'm sure the stats will be skewed towards survival here ;)



Do you, your spouse or someone dear to you have CH?
I noticed the plugs toward your migraineur sites.

We have several here with multiple HA type but have CH as there primary condition.

Either way, here you will find a millenia worth of knowledge regarding Clusters.

Best,

Eric
Title: Re: Suicide and CH/Migraine Patients
Post by LeLimey on Aug 19th, 2005, 3:56am
I've never heard anything of the like.
Considering that current statistics have it as something like 1 per 1000 of population having CH I think we would notice if 18% of us were topping ourselves too! :)
The emphasis here is on living with it.. not dying because of it.
And we're doing a bloody good job with that. If you need a hand, let us know, we're pretty good at helping each other out of the mire when needs be!
Title: Re: Suicide and CH/Migraine Patients
Post by unsolved1 on Aug 19th, 2005, 7:20am
I think that those 'stats' are totally ridiculous  [smiley=laugh.gif]

UNsolved
Title: Re: Suicide and CH/Migraine Patients
Post by yikes-another-one on Aug 19th, 2005, 8:10pm
:)
When in a ton of pain,
people have many strange thoughts.

Most of us know the pain will disappear,
hopefully in an hour or less....
so we hang on....to our lives and loved ones,
because we know things will get better.

If you are lonely or scared....
and getting lower,
reach out to a doctor or loved one.

You do not have to suffer...for long.

There will be a sunrise tomorrow,
and a new chance to have a day without pain.

So hang in there
and please
don't give up.
Title: Re: Suicide and CH/Migraine Patients
Post by BobG on Aug 20th, 2005, 3:26am
I have been reading this message board for years and I have never heard of anyone offing themselve because of clusterheadaches.
But, I'm sure if may have crossed a few minds.
Title: Re: Suicide and CH/Migraine Patients
Post by don on Aug 20th, 2005, 8:16am

Quote:
I once read an article that stated that the statistics of suicide for Clusterheads and Migraineurs was around 18%


Probably in an article buy Ali Sultan
Title: Re: Suicide and CH/Migraine Patients
Post by pubgirl on Aug 20th, 2005, 5:19pm
I wouldn't even begin to guess how many Ch patients Prof G and his team have treated (many, many, many thousands at least) and he only says he knows of one suicide. That is a tiny precentage.

W
Title: Re: Suicide and CH/Migraine Patients
Post by kcopelin on Aug 20th, 2005, 6:04pm
Which is all very interesting since CH have been called "suicide headaches".  Fact is we ain't just survivors, we're victors.  
kathy
Title: Re: Suicide and CH/Migraine Patients
Post by BobG on Aug 21st, 2005, 2:12am

on 08/20/05 at 18:04:44, kcopelin wrote:
Which is all very interesting since CH have been called "suicide headaches".  Fact is we ain't just survivors, we're victors.  
kathy

Yep. They are also known as executive headaches. Something to do with persons that experience a lot of pressure and stress on the job then have cluster attacks while relaxing in the evenings and during sleep.
Don't know how many excutives we have here, I'd bet very few, most of us are just work-a-day slobs trying to make it payday to payday. That is stressful!
Stay stressed, it's good for you.  ;;D
Title: Re: Suicide and CH/Migraine Patients
Post by CHTom on Aug 21st, 2005, 3:01am
I've noticed that when under a lot of stress and have many things to accomplish in a short time, I don't usually feel my CH pain, even if it is at a kip 10; I think that the reason is that our brain is distracted from the pain by the stress and taskings, but, like you said, once the stress is over, the CH pain returns and, of course, like every other CHer, I get pain of varying degrees when life is beautiful and there is no stress.  I actually have grown to fear the few PF times that I have (I am chronic) because I know what will follow.  Its a wonderful life!
Title: Re: Suicide and CH/Migraine Patients
Post by Jonny on Aug 21st, 2005, 4:14am

on 08/21/05 at 03:01:11, CHTom wrote:
I don't usually feel my CH pain, even if it is at a kip 10;


How do you know you have a Kip 10 if you dont feel it?
Title: Re: Suicide and CH/Migraine Patients
Post by Ree on Aug 21st, 2005, 9:57am
that was an interesting way to put it..... you don't feel your pain???? No disrespect.  But if you don't feel your pain what brought you here in the first place.... Could you maybe explain your comment CH.Tom....?  Because if you aren't feeling your CH pain you aren't feeling CH.  Be well Ree
Title: Re: Suicide and CH/Migraine Patients
Post by unsolved1 on Aug 21st, 2005, 12:14pm

on 08/21/05 at 03:01:11, CHTom wrote:
I don't usually feel my CH pain, even if it is at a kip 10


If you don't feel it, it's NEVER a Kip 10  ::)

UNsolved
Title: Re: Suicide and CH/Migraine Patients
Post by Salvelinus on Aug 21st, 2005, 4:38pm
When I have a 10, I can't even walk.  There is no distracting from a 10, at least for me.

About the suicides, I haven't been here long enough or have studied CH enough yet to have any idea of the stats.  I do know it's crossed my mind often when the pain goes to 9 or above, but fortunately I'm so helpless by that point I could never accomplish it anyway.

When it goes away . . . nothing feels better, and life is good again.

Namaste,
--Scott
Title: Re: Suicide and CH/Migraine Patients
Post by Jasmyn on Aug 21st, 2005, 6:30pm
When I first came here THAT was what was on my mind.   But face it, when you have so much support and you fail in guts and then when the pain is gone you always wonder why you wanted to do it, you realize your problem is not so much Ch but the split personality disorder caused by CH! :D

Besides when the rational mind(what rational mind I have left! ;;D) after the pain, sets in, I remember I have children and it just wouldn't be right.

I think we all feel like that some time or the other (like a lot of people said) but we are actually really trying our best to live through this.  Everytime we come out on the other end of a hit we are extremely glad to be alive because it is finally over... until the next time! ;)
Title: Re: Suicide and CH/Migraine Patients
Post by bnfreeman on Aug 21st, 2005, 6:48pm
I don't know of any stats, but I have some books on headaches. And when talking of clusters it describes them as " the worst possible headache pain, and even leading to suicide" . I am sure many have thought it, but we never do it.

BF
Title: Re: Suicide and CH/Migraine Patients
Post by Sean_C on Aug 21st, 2005, 8:51pm

on 08/21/05 at 03:01:11, CHTom wrote:
I've noticed that when under a lot of stress and have many things to accomplish in a short time, I don't usually feel my CH pain, even if it is at a kip 10; I think that the reason is that our brain is distracted from the pain by the stress and taskings, but, like you said, once the stress is over, the CH pain returns and, of course, like every other CHer, I get pain of varying degrees when life is beautiful and there is no stress.  I actually have grown to fear the few PF times that I have (I am chronic) because I know what will follow.  Its a wonderful life!


Who let this guy through the back door. If you can't feel cluster pain you don't suffer from it Tom. Sorry to disapoint you dude.

Sean...................................
Title: Re: Suicide and CH/Migraine Patients
Post by AussieBrian on Aug 21st, 2005, 8:57pm
I'd been battling the monster for 10 years, not knowing what it was, when I eventually saw a neuro.  He said, "Oh, it's just cluster headaches. You'll have them until your mid-40s."  I asked if that's when I'd get better and he said, "Nah, you'll have shot yourself by then."

That was exactly the moment I swore to prove him wrong.
Title: Re: Suicide and CH/Migraine Patients
Post by Sean_C on Aug 21st, 2005, 9:00pm

on 08/21/05 at 20:57:49, AussieBrian wrote:
I'd been battling the monster for 10 years, not knowing what it was, when I eventually saw a neuro.  He said, "Oh, it's just cluster headaches. You'll have them until your mid-40s."  I asked if that's when I'd get better and he said, "Nah, you'll have shot yourself by then."

That was exactly the moment I swore to prove him wrong.


ROTFLMMFAO at least he has a sense of humor I'll take it ;;D
Title: Re: Suicide and CH/Migraine Patients
Post by Salvelinus on Aug 21st, 2005, 9:13pm
I think I might have said "Actually, that's when I'll die by lethal injection for shooting you . . . "
Title: Re: Suicide and CH/Migraine Patients
Post by CHTom on Aug 21st, 2005, 9:48pm
Oh I have chronic cluster headaches, Sean-been diagnosed by several neurologists, including Dr. Diamond during an outpatient visit to the Diamond Clinic, and I DO feel the pain and get hit 4-6 times a day, usually starting when I wake up or about an hour later; but there are times when the mind can be distracted from the pain for short periods of time-one of my neurologists explained this to me when I questioned him about it...I'm sure that others have had this experience.  It is not something special that I do, it just happens once in awhile and the pain always returns after the brief hiatus.  Each year I lose several thousand dollars in salary because the pain is so bad that I can't go into work or have to leave early because I can't function due to the pain.  For the past few months I've been getting hit with a very severe pain at about 1:30 PM-icepick in the eye, tearing, eyelid droops more than usual, etc.  It lasts from 2-4 hours, then decreases and my eye feels as if someone socked me there.
Title: Re: Suicide and CH/Migraine Patients
Post by nani on Aug 22nd, 2005, 12:38am
I still have a hard time believing that anyone could be distracted enough from a k-10 to "not" feel it, even for a few seconds.  JMHO
Title: Re: Suicide and CH/Migraine Patients
Post by Chillrmn1 on Aug 22nd, 2005, 5:36am
Gotta agree with Nani...........A Kip 10 over powers all my "Mind Over Pain" thing.
Title: Re: Suicide and CH/Migraine Patients
Post by CHTom on Aug 22nd, 2005, 5:58am
If we are going to split hairs, yes, sometimes I do feel it for a few seconds when very distracted, sometimes even for a few minutes and sometimes I feel it very much no matter how distracted I am by other things, believe it or not.
Title: Re: Suicide and CH/Migraine Patients
Post by LeLimey on Aug 22nd, 2005, 6:04am

on 08/22/05 at 05:36:11, Chillrmn1 wrote:
Gotta agree with Nani...........A Kip 10 over powers all my "Mind Over Pain" thing.


Ditto.
Before CH I thought I knew how to handle pain. I really was quite sure I had a handle on how to cope with pain.. quite laughable now really because I cannot concentrate CH away. A Kip 10 that you can't feel beggars belief..
Title: Re: Suicide and CH/Migraine Patients
Post by AussieBrian on Aug 22nd, 2005, 7:14am
It's also relevant that it always affects us all differently.  

If this bloke has his own little remedy that allows him to forget it, even for a moment, then I'm not sceptical.

I'm outright bloody jealous!!
Title: Re: Suicide and CH/Migraine Patients
Post by CHTom on Aug 22nd, 2005, 7:30am
I wish that I could control when this happens, but I can't-every once in awhile I get lucky, but it does't last for long, Brian, so nothing to be jealous about.  Maybe I should try Dr. Ali Baba's (or whatever his name is) bent ruler around my head, attached to a car battery-I'll bet that would really distract me from my CH pain!  PFDANs to all whenever and however you can get them! :)
Title: Re: Suicide and CH/Migraine Patients
Post by Sandy_C on Aug 22nd, 2005, 7:38am

on 08/22/05 at 06:04:50, LeLimey wrote:
Ditto.
Before CH I thought I knew how to handle pain. I really was quite sure I had a handle on how to cope with pain.. quite laughable now really because I cannot concentrate CH away. A Kip 10 that you can't feel beggars belief..



I have always been able to handle and work through any pain I've ever had, and I've had many surgeries, where I have refused pain killers other than the stupid Tylenol they give you in the hospital,  two natural childbirths, and a bunch of other garbage over my life.  I thought I had a very, very high pain threshhold. Right!!! Until CH.

I honestly thought about suicide once, but I couldn't find the bullets for my husband's gun.  And I was searching while screaming and head banging.  But then, it passed and I realized I would never, ever contemplate that again.  But not to feel the pain?  If true, that would an incredible miracle.



Sandy
Title: Re: Suicide and CH/Migraine Patients
Post by Lizzie2 on Aug 22nd, 2005, 8:00am
Eh...considered suicide - lots of times - but never from CH alone.  I always remind myself that we never know what tomorrow holds - tomorrow could be great and it could suck, but the fact is - things are ALWAYS changing - nothing stays the same for long.

Sure, the CH is a huge daily battle, but what if tomorrow it's not...or there is 1 fewer hit, for example.  I'll take that - focusing on the positives that I have in my life instead of the negatives about what I don't have.

So here are two quotes I keep in  mind - A LOT!
"Keep breathing. The sun will rise tomorrow, and you never know what the tide may bring."~Castaway

"In the depth of winter, I finally found that within me there lived and invincible summer."~Albert Camus

Keep on keepin on - and never be afraid to ask for help if you need it!  Asking for help is about 3/4 of the battle. ;)

Carrie :)
Title: Re: Suicide and CH/Migraine Patients
Post by pubgirl on Aug 22nd, 2005, 8:05am
Not feel it?

I don't get it at all.

When in Kip 10, I AM the pain, nothing else exists, no time, no feelings beyond the pain, nothing.

The only simile I have is that in childbirth I retreated into a silent black world where the only thingI knew was the pain, and my only focus was me and the baby surviving it, and KIp 10 Ch pain is worse.


W the B
Title: Re: Suicide and CH/Migraine Patients
Post by Lizzie2 on Aug 22nd, 2005, 8:08am

on 08/22/05 at 08:05:05, pubgirl wrote:
The only simile I have is that in childbirth I retreated into a silent black world where the only thingI knew was the pain, and my only focus was me and the baby surviving it, and KIp 10 Ch pain is worse.


W the B


Especially cuz a baby doesn't pop out of your eyeball  at the end of a K10!  ;)   ;;D
Title: Re: Suicide and CH/Migraine Patients
Post by BobG on Aug 22nd, 2005, 8:32am

on 08/22/05 at 08:08:06, Lizzie2 wrote:
Especially cuz a baby doesn't pop out of your eyeball  at the end of a K10! three or four times a day.  ;)   ;;D
Title: Re: Suicide and CH/Migraine Patients
Post by Lizzie2 on Aug 22nd, 2005, 11:34am
LOL yup Bob - that too.

However, logistically...all pain aside...if someone was giving birth 3-4 times a day, they'd probably be dead by time number 2 or 3 at the latest!

Hard to get through just 1 as it is! :)
Title: Re: Suicide and CH/Migraine Patients
Post by Frank_W on Aug 22nd, 2005, 12:25pm
Sorry.... At a true Kip-10, the only things that exist in Frank's little universe is the pain, and the command to myself to BREATHE. "Inhale.... (good) Exhale..... (good) Inhale..." and so forth. A Kip-10 reduces me to the level of a wild animal trying to gnaw its own leg off to escape the trap because he sees a man coming with the gun.

(and sometimes, I pray for the gun)
Title: Re: Suicide and CH/Migraine Patients
Post by Jasmyn on Aug 22nd, 2005, 1:15pm
Ditto Frank!
Title: Re: Suicide and CH/Migraine Patients
Post by kimmeesue on Aug 22nd, 2005, 2:44pm
As one who experiences Kip 10's to the tune of three a week I can't fathom how anyone could be distracted enough to not feel the pain.  But I guarantee if you could bottle it you would change the world as we know it.
As for suicide...never occurred to me.  Murder yes, suicide, no.
Title: Re: Suicide and CH/Migraine Patients
Post by Cooked Brain on Aug 22nd, 2005, 3:46pm

on 08/21/05 at 03:01:11, CHTom wrote:
I don't usually feel my CH pain, even if it is at a kip 10


[smiley=crackup.gif]
Title: Re: Suicide and CH/Migraine Patients
Post by catherinelane on Aug 22nd, 2005, 4:30pm
would probably walk to the nearest cliff and throw myself off if it wasnt for my family so i think yes there are persons who commit suicide through ch
Title: Re: Suicide and CH/Migraine Patients
Post by Sean_C on Aug 22nd, 2005, 8:57pm
Tom have you tried indomethacin? Be honest.

Sean................................
Title: Re: Suicide and CH/Migraine Patients
Post by AussieBrian on Aug 22nd, 2005, 9:17pm
As it happens, I'm aware of a case though the information is second hand.  A lady policeman found me wandering the streets naked with a full-blown kip10 and brought me home.

She was actually aware of CH as her father had it until he could take no more.  I felt sorrier for her than I felt for myself.
Title: Re: Suicide and CH/Migraine Patients
Post by Salvelinus on Aug 22nd, 2005, 9:41pm
:o

You're a lucky man, Brian.  And, yes, how unfortunate for her.  I'd bet helping you also helped her.

Namaste,
--Scott
Title: Re: Suicide and CH/Migraine Patients
Post by brainfreeze on Aug 23rd, 2005, 4:53pm
Imagine for one moment,  a person afflicted with these that got no support,  had no family, no medical relief,  was chronic, kip 10's, 7-8 times a day for months and months, then for two years (raging) from the get-go.  He committed suicide.  
I only know of one and hope we never encounter another. :'(
Statistics are just numbers.  It just takes knowing one person.

PF to everyone....  rest or rock easy....
Title: Re: Suicide and CH/Migraine Patients
Post by Kiwiinoz58 on Aug 23rd, 2005, 5:43pm
A small snippet of information. Indomethacin ONLY works for Paroxysmal Hemicrania headaches, which is the prime way of diagnosing the difference between the 2 types if it is in doubt. A lot of the symptoms are the same.
Title: Re: Suicide and CH/Migraine Patients
Post by Lizzie2 on Aug 23rd, 2005, 6:22pm
Also works for Hemicrania Continua, Idiopathic Stabbing Headaches (Ice Pick Headaches) and a few other types....

Catch is that not everyone with these headache types is going to respond to the indomethacin either.

It's a bit of a game.....but a useful drug to try early on, if nothing else!
Title: Re: Suicide and CH/Migraine Patients
Post by E-Double on Aug 23rd, 2005, 6:27pm

on 08/23/05 at 17:43:27, Kiwiinoz58 wrote:
A small snippet of information. Indomethacin ONLY works for Paroxysmal Hemicrania headaches, which is the prime way of diagnosing the difference between the 2 types if it is in doubt. A lot of the symptoms are the same.


Partially correct.....

Indomethacin works for:
*Paroxysmal Hemicrania
*Idiopathic Stabbing Headache aka icepick (I have   these too)
*Chronic Daily Bilateral Headache
*Hemicrania continua
*Hypnic Headache
*Thunderclap
*Primary cough HA

Just not clusters

Check here:
http://216.25.100.131/ihscommon/guidelines/pdfs/full_form_watermarked.pdf
Title: Re: Suicide and CH/Migraine Patients
Post by Salvelinus on Aug 23rd, 2005, 8:01pm
You rock, E.  Thanks for the link.  I'll add it to my reading list.

BTW, why do you and Kiwiinoz say Indocin doesn't work for clusters?  I didn't read the link thoroughly yet, but I did read through the diagnostic criteria for clusters and a few more.  I didn't see anything referring to clusters not responding to Indocin.  I did see that parox. hemicrainia responds well (it says absolutely) to it, but nothing about response to the med ruling out CH.
Title: Re: Suicide and CH/Migraine Patients
Post by Sean_C on Aug 23rd, 2005, 8:31pm

on 08/23/05 at 17:43:27, Kiwiinoz58 wrote:
A small snippet of information. Indomethacin ONLY works for Paroxysmal Hemicrania headaches, which is the prime way of diagnosing the difference between the 2 types if it is in doubt. A lot of the symptoms are the same.


Alot of people go misdiagnosed by MANY proffesionals in the medical field. Its not uncommon for a patient to believe he has something for years, if a proffesional he trust tells him so. For someone to tell me that they cannot feel cluster pain at a kip 10, tells me something other than clusterheadaches is happening because painless clusterheadaches do not excist. If they did we wouldn't be here. Its something Tom should look into and consider trying if he talks to his doc.

Sean.................................................
Title: Re: Suicide and CH/Migraine Patients
Post by BobG on Aug 24th, 2005, 4:01am

on 08/23/05 at 20:31:55, Sean_C wrote:
For someone to tell me that they cannot feel cluster pain at a kip 10, tells me something other than clusterheadaches is happening True, but because painless clusterheadaches do not excist. Not totally true

'Phantom' clusters have been dicussed here (a long time ago).

http://www.clusterheadaches.com/wwwboard/messages/59810.html


http://www.pslgroup.com/dg/1dc5ee.htm
Title: Re: Suicide and CH/Migraine Patients
Post by BarbaraD on Aug 24th, 2005, 5:21am

on 08/20/05 at 03:26:30, BobG wrote:
I have been reading this message board for years and I have never heard of anyone offing themselve because of clusterheadaches.
But, I'm sure if may have crossed a few minds.



In our little town, I've known TWO people who did because of Clusters. One a teenager and the other a 51 year old doctor. The teen because everyone thought she was just putting on or crazy  -- the doc because he just couldn't take the pain any more (he was chronic).

I think over the years we've had a couple from this board. I know we've had a few come really close.

We've had some threads on suicide.  

Hugs BD
Title: Re: Suicide and CH/Migraine Patients
Post by Sean_C on Aug 24th, 2005, 4:33pm

on 08/24/05 at 04:01:18, BobG wrote:
'Phantom' clusters have been dicussed here (a long time ago).

http://www.clusterheadaches.com/wwwboard/messages/59810.html


http://www.pslgroup.com/dg/1dc5ee.htm


Bob no offence but in my 26 years I've never had a "kip 10" phantom cluster. How can you call a cluster attack a "kip 10" if you didn't feel it? Maybe Toms "kip 10's" are my tiny shadows I guess. If thats the case do I say that "would've been a kip 10 if I felt it"?

I'm not buying it, I feel my own pain, and its without question unbearable to say the least. You will never hear me say I cannot feel my clusters because if I can't feel it I'm not getting one ;;D

I have to go to the dentist tomorrow because I have a really bad toothache but it doesn't hurt.

Tom might have CH, I'm no doc, but he definately has something else going on and its worth investigating if it were my head, maybe he has an opportunity to get some relief. Wish I could.

Sean.............................................
Title: Re: Suicide and CH/Migraine Patients
Post by LeLimey on Aug 24th, 2005, 4:53pm
Sean with respect I've heard several people talking about phantom clusters, I do believe they do happen although they have never happend to me personally what I do not believe however is that you can assign a kiip rating to a phantom cluster. If all you are having is the autonomic symptoms and no pain then how the hell can it be a kip anything since kip ratings are based on PAIN?! That bit makes no sense not the rest of it for me.
Helen
Title: Re: Suicide and CH/Migraine Patients
Post by Sean_C on Aug 24th, 2005, 5:01pm
I want phantom clusters then ;;D Hell, I've had more than my fair share of non phantom clusters thats for sure  ;)

A phantom cluster is a medical term for shadows then I'll take it. Those people in Bobs link skipped there cycle and were hampered by shadows. I have no other explanation. JMHO of course. ;;D

Sean.....................
Title: Re: Suicide and CH/Migraine Patients
Post by Jonny on Aug 24th, 2005, 5:03pm

on 08/22/05 at 05:58:50, CHTom wrote:
If we are going to split hairs, yes, sometimes I do feel it for a few seconds when very distracted, sometimes even for a few minutes and sometimes I feel it very much no matter how distracted I am by other things, believe it or not.


Heres where he back peddles...hes a fucking troll

Makes an outrageous comment and then argues it, thats the troll MO

Anyone notice that he showed up as Hdildo stopped posting?, or that he posts JUST like Hdildo/John?.....and that he argues the same topics as Hdildo/John? (Go look at the Cindy Sheehan thread)

I told you all this in the above mentioned thread ::)

Keep feeding the troll, Christ!!
Title: Re: Suicide and CH/Migraine Patients
Post by Sean_C on Aug 24th, 2005, 5:08pm
I didn't read it bro but I knew something was fucked up.

I was born during the day but it wasn't yesterday ;;D

The King uncovers the plot again ;;D

Thanks bud

Sean................................
Title: Re: Suicide and CH/Migraine Patients
Post by maffumatt on Aug 24th, 2005, 6:35pm
life sucks
Title: Re: Suicide and CH/Migraine Patients
Post by Chillrmn1 on Aug 24th, 2005, 6:57pm
On Phantom Attacks..........I've had one in 28 years and it happened during my last cycle. The familiar pressure started at the base of my neck and radiated upward towards the side and top of my head along with the blocking of my sinus. Seemed like all the players for the cluster attack were there except the pain. This lasted about ten minutes and then the symptoms were gone.  Since the Kip scale is a measure of pain, I don't see how one could assign a Kip level to a Phantom Attack since no pain is involved.

Bob  
Title: Re: Suicide and CH/Migraine Patients
Post by Sean_C on Aug 24th, 2005, 7:25pm

on 08/24/05 at 18:57:22, Chillrmn1 wrote:
On Phantom Attacks..........I've had one in 28 years and it happened during my last cycle. The familiar pressure started at the base of my neck and radiated upward towards the side and top of my head along with the blocking of my sinus. Seemed like all the players for the cluster attack were there except the pain. This lasted about ten minutes and then the symptoms were gone.  Since the Kip scale is a measure of pain, I don't see how one could assign a Kip level to a Phantom Attack since no pain is involved.

Bob  


Shadow, add a nuicence pain to the equasion and now you have a pain in the asss shadow ;)
Title: Re: Suicide and CH/Migraine Patients
Post by Jonny on Aug 24th, 2005, 7:42pm

on 08/24/05 at 18:57:22, Chillrmn1 wrote:
I don't see how one could assign a Kip level to a Phantom Attack since no pain is involved.


This is the key, Bob is dead on!.......How can you Kip it if theres on pain?

Fucking Troll
Title: Re: Suicide and CH/Migraine Patients
Post by Jonny on Aug 24th, 2005, 8:13pm
Psssst....here he comes ;;D
Title: Re: Suicide and CH/Migraine Patients
Post by nani on Aug 24th, 2005, 8:14pm
When I started kudzu, I had incidents where I had all the autonomic symptoms of a high kip, but none of the pain. In that case it wasn't that I was distracted from any pain...it was the kudzu blocking the pain receptors.
I knew they were high kips because of the amount of change in my facial features. The excessively runny nose, eye drooping to the point of almost closing, swelling and tearing. On the kudzu thread I mentioned looking into the mirror and seeing a k9 face. Someone asked me what breed I looked like. LOL
Title: Re: Suicide and CH/Migraine Patients
Post by Sean_C on Aug 24th, 2005, 8:27pm

on 08/24/05 at 20:13:03, Jonny wrote:
Psssst....here he comes ;;D


ROTFLMMFAO you fucking kill me  [smiley=crackup.gif] [smiley=crackup.gif] [smiley=crackup.gif]
Title: Re: Suicide and CH/Migraine Patients
Post by Kevin_M on Aug 24th, 2005, 8:31pm

Quote:
I don't usually feel my CH pain, even if it is at a kip 10; I think that the reason is that our brain is distracted from the pain by the stress and taskings


Get those taxes out, consolidate those loans, close on that contract, or ask the boss for a raise.  Maybe that'll help.  




Title: Re: Suicide and CH/Migraine Patients
Post by BobG on Aug 25th, 2005, 5:01am

on 08/23/05 at 20:31:55, Sean_C wrote:
painless clusterheadaches do not excist.


We are talking about 2 separate things here.
Thing 1....Clusters with pain and measurable on the Kip Scale.
Thing 2....Cluster without pain, aka Phantom. No pain but the symptoms are present.

You are correct Sean. A Kip 10 cannot be a painless cluster.
I was refering to your statement that "painless clusterheadaches do not excist."
Title: Re: Suicide and CH/Migraine Patients
Post by AussieBrian on Aug 25th, 2005, 6:06am
Thank you, BobG.  We're talking about separate issues, comparing apples with oranges, and coming up with motor cars.

I've had "attacks" with no pain at all and thought, 'My God. If this one was real it would blow the Kip scale off the map!'

Just wish they were all like that.  I'd wear the hang-dog eye as a badge of pride and accomplishment.  
Title: Re: Suicide and CH/Migraine Patients
Post by Chillrmn1 on Aug 25th, 2005, 6:36am
"Just wish they were all like that.  I'd wear the hang-dog eye as a badge of pride and accomplishment."

Me too Brian, me too.

Bob
Title: Re: Suicide and CH/Migraine Patients
Post by Jonny on Aug 25th, 2005, 4:06pm

on 08/25/05 at 06:06:47, AussieBrian wrote:
I've had "attacks" with no pain at all and thought, 'My God. If this one was real it would blow the Kip scale off the map!'  


How in the hell can you say that if you had no pain?

I like you and love your humor, Brian, but, that statement is "Off the map" all on its own!

There is NO possible way to tell Kip anything if theres no pain......If someone thinks im wrong on this...please tell me why.
Title: Re: Suicide and CH/Migraine Patients
Post by Margi on Aug 25th, 2005, 4:52pm
I remember when Todd brought that subject to the board, so I started paying attention.  Mike gets the phantom (we call them "silent") attacks, usually when in remission.

But...he doesn't always realize he's getting them, because he doesn't feel any pain.  So how could he assign it a pain value?  I always see it though, his pupils become different sizes.  It's usually right around the time he gets home from work too (i.e. relaxation time).  He does stuff up a bit on his cluster side, but if he's in remission he usually doesn't make the cluster connection (he has allergies) - either that or he just doesn't WANT to go there.  But they are definitely cluster activity of some kind, because the pupils revert to normal after 45 minutes.  

Interestingly, there is also a painless migraine variation out there.  Just the aura phase but the pain phase doesn't develop.  Occular migraine.  Still freaks the hell out of a migrainer but it's over quick and the pain just doesn't come.  

We're a lot of fun at parties, Mike and me, if we're in this painless state.  Mike gets the "monkey eyes" and me, I'm just a little more stupid than usual, but neither one of us is in pain, so we're still smilin.  Scares the crap outta most folks.  :)
Title: Re: Suicide and CH/Migraine Patients
Post by Kevin_M on Aug 25th, 2005, 7:08pm

Quote:
I don't usually feel my CH pain, even if it is at a kip 10; I think that the reason is that our brain is distracted from the pain by the stress and taskings, but, like you said, once the stress is over, the CH pain returns

I DO feel the pain and get hit 4-6 times a day, usually starting when I wake up or about an hour later; but there are times when the mind can be distracted from the pain for short periods of time



You're not wrong Jonny.  He is not referring to phantom hits.  There is pain involved in these hits, as high as a Kip 10, but he is able to be distracted from the pain, even a Kip 10.   Sometimes.  

Not when it's beyond what you can endure  = Kip 10  
Title: Re: Suicide and CH/Migraine Patients
Post by Sean_C on Aug 25th, 2005, 7:44pm

on 08/25/05 at 05:01:40, BobG wrote:
We are talking about 2 separate things here.
Thing 1....Clusters with pain and measurable on the Kip Scale.
Thing 2....Cluster without pain, aka Phantom. No pain but the symptoms are present.


Bob,

Thing 1 is obvious, we all know all to well what a clusterheadache feels like.

Thing 2 is in my observations of my own perspective a "shadow" rather than a "phantom" cluster. I think we're talking about the same thing. Its a "cluster attack" just not the debilitating kind. We all suffer from shadows or at least most of us, should we begin to call them phantom clusters now instead? As for painless clusters I don't suffer from that syndrome, I only get the painful ones.

PFDAN to all

Sean................................................
Title: Re: Suicide and CH/Migraine Patients
Post by Jonny on Aug 25th, 2005, 7:50pm
OK, Im going to say it and I want everyone to fucking read it!!!

IF THERES NO PAIN, ITS NOT A FUCKING CLUSTERHEADACHE!

You have a fucking Meegraine Damn it!!!!
Title: Re: Suicide and CH/Migraine Patients
Post by nani on Aug 25th, 2005, 7:50pm
Sean, I've only experienced "phantom hits" when on kudzu and now psilocybin. Since both have an effect on the pain receptors, I have to think the pain was "blocked" in some way. The attack was happening while the pain receptors were out of order, so to speak.  Not the same as saying I didn't feel it because I was able to distract myself. Shadows are different for me. There's nothing "phantom" about them, just less pain than a full blown attack.
Title: Re: Suicide and CH/Migraine Patients
Post by Jonny on Aug 25th, 2005, 7:57pm

on 08/25/05 at 19:50:42, nani wrote:
Sean, I've only experienced "phantom hits" when on kudzu and now psilocybin. Since both have an effect on the pain receptors, I have to think the pain was "blocked" in some way. The attack was happening while the pain receptors were out of order, so to speak.  Not the same as saying I didn't feel it because I was able to distract myself. Shadows are different for me. There's nothing "phantom" about them, just less pain than a full blown attack.


Hello!
Title: Re: Suicide and CH/Migraine Patients
Post by nani on Aug 25th, 2005, 8:00pm

on 08/25/05 at 19:57:21, Jonny wrote:
Hello!


Hellooo...
:P
Go read the original kudzu thread. The reason we know it's a CH is because you can "see" it happening on your face. I don't know about you, but, I do not normally have a swollen, droopy, teary eye and a runny, snotty nose when I'm not having a CH.
Title: Re: Suicide and CH/Migraine Patients
Post by Sean_C on Aug 25th, 2005, 8:01pm
Nuff said I'm with the King, next thread I'm moving on [smiley=laugh.gif]
Title: Re: Suicide and CH/Migraine Patients
Post by Jonny on Aug 25th, 2005, 8:04pm

on 08/25/05 at 20:00:15, nani wrote:
Hellooo...
:P
Go read the original kudzu thread. The reason we know it's a CH is because you can "see" it happening on your face. I don't know about you, but, I do not normally have a swollen, droopy, teary eye and a runny, snotty nose when I'm not having a CH.


Allergies....aint CH!
Title: Re: Suicide and CH/Migraine Patients
Post by E-Double on Aug 25th, 2005, 8:05pm

on 08/25/05 at 19:50:06, Jonny wrote:
OK, Im going to say it and I want everyone to fucking read it!!!

IF THERES NO PAIN, ITS NOT A FUCKING CLUSTERHEADACHE!

You have a fucking Meegraine Damn it!!!!


Sorry dude........You're wrong.
I'll find the link! .....nevermind Bob already posted it.

Anyway................these suck!
Title: Re: Suicide and CH/Migraine Patients
Post by Kevin_M on Aug 25th, 2005, 8:06pm
I'm unable to think or comprehend at all.  I have no idea what this guy is talking about.
Title: Re: Suicide and CH/Migraine Patients
Post by Jonny on Aug 25th, 2005, 8:11pm

on 08/25/05 at 20:05:22, E-Double wrote:
Anyway................these suck!


What sucks bro?

CH without pain?

Is there such a thing as CH sucking without pain?

You tell me!!
Title: Re: Suicide and CH/Migraine Patients
Post by Sean_C on Aug 25th, 2005, 8:21pm
If you get phantom anal penetration would that be considered a pain in the ass or just anal penetration without penetration of the anis???? Just curious.

NO pain no cluster headache ;;D Painless clusterheads nap when getting hit ;)
Title: Re: Suicide and CH/Migraine Patients
Post by E-Double on Aug 25th, 2005, 8:25pm

on 08/25/05 at 20:11:47, Jonny wrote:
What sucks bro?

CH without pain?

Is there such a thing as CH sucking without pain?

You tell me!!


CH in general my man!!!
In you 30 yrs dealing Have ya ever gotten the eye twitch, feel it closing, stuffy nose feeling ( sounds like a nyquel commercial [smiley=laugh.gif]) and think your gonna get whacked but nothing happens? The dread, the angst building because ya know that regardless of dealing with it everyday you know that it just bites and each time is like brand new........but then nothing!

That is completely different then what I think the fella was saying about a K10....That's crap. I understand having pain build and then it completely abort from an adrenyline rush, but not the "suicide call" of a 10.
Title: Re: Suicide and CH/Migraine Patients
Post by Lizzie2 on Aug 25th, 2005, 8:25pm
For one, this is the reference you're all sort of looking for....


Quote:
1: Cephalalgia. 2004 Nov;24(11):1005-6. Related Articles, Links  


Periodic autonomic dysfunction without pain in a patient with cluster headache.

Ashkenazi A, Silberstein SD.

Publication Types:
Case Reports
Letter

PMID: 15482367 [PubMed - indexed for MEDLINE]


That being posted, my shadows have some funky presentations, but the biggest key for me is that they are not more painful than my chronic daily headache that never goes away.  So - other than a watery eye, stuffy nose, waking up at odd hours of the night, but no actual severe cluster pain, I don't mind the shadows....  I'd boot the chronic daily headache to hell and back before I really took great notice of the shadows -but that's just my special circumstance...!

To each his own, though!
Title: Re: Suicide and CH/Migraine Patients
Post by broomhilda on Aug 25th, 2005, 8:28pm
So are we calling shadows phantoms now? You say potato, I say poetatoe ;;D
Title: Re: Suicide and CH/Migraine Patients
Post by Jonny on Aug 25th, 2005, 8:31pm

on 08/25/05 at 20:25:07, E-Double wrote:
CH in general my man!!!
In you 30 yrs dealing Have ya ever gotten the eye twitch, feel it closing, stuffy nose feeling ( sounds like a nyquel commercial [smiley=laugh.gif]) and think your gonna get whacked but nothing happens? The dread, the angst building because ya know that regardless of dealing with it everyday you know that it just bites and each time is like brand new........but then nothing!


Sure.....Its called "A shadow"

Duh, Dude
Title: Re: Suicide and CH/Migraine Patients
Post by Redd715 on Aug 25th, 2005, 8:44pm
And here this family goes bickering again...things are back to normal.... [smiley=laugh.gif] [smiley=laugh.gif]
Title: Re: Suicide and CH/Migraine Patients
Post by E-Double on Aug 25th, 2005, 8:50pm

on 08/25/05 at 20:31:14, Jonny wrote:
Sure.....Its called "A shadow"

Duh, Dude


I don't think I'm conveying it properly then.

I guess since I came here and started reading, learning going by the "Kip scale" I always associated shadows, even mild with pressure building. Some level of discomfort then as they (shadows) build, so does the pressure, going from discomfort to pain.

For example, today I got WHACKED 4X's. In between I had persistent shadows, pressure and discomfort. I was fully functional yet there was pressure. I always called a shadow a low level CH. I also had one instance where there was no pressure, no pain, but my eye was closing and I was stuffy. It was an annoyance but it did not have any pressure nor pain. That is in my mind different then a shadow. Could be wrong, yet even with the attempt of operationalizing our pain through the kip scale which we may agree on, there has to be discrepency amongst just because we are all individuals.
Isn't it possible that for one perosn who in general has a high tolerance for pain will have a  K6 which to another would be considered a K10???
Food for thought.

I know we are in agreement that these suck.

and BTW Who's High pitch?
Title: Re: Suicide and CH/Migraine Patients
Post by Sean_C on Aug 25th, 2005, 8:58pm
There all shadows Eric, its just a lower level CH at best. Phantom clusters is a word that shouldn't be utilized in my opinion. They don't excist.

Sean.....................

And yes I feel your pain ;;D
Title: Re: Suicide and CH/Migraine Patients
Post by E-Double on Aug 25th, 2005, 9:00pm
no one answered the question........



Who's High Pitch?
Title: Re: Suicide and CH/Migraine Patients
Post by Sean_C on Aug 25th, 2005, 9:04pm

on 08/25/05 at 21:00:21, E-Double wrote:
no one answered the question........



Who's High Pitch?



Where did you see this High Pitch?
Title: Re: Suicide and CH/Migraine Patients
Post by E-Double on Aug 25th, 2005, 9:07pm

on 08/25/05 at 21:04:52, Sean_C wrote:
Where did you see this High Pitch?


You better ask Jonny then [smiley=laugh.gif]
Title: Re: Suicide and CH/Migraine Patients
Post by nani on Aug 25th, 2005, 9:10pm

on 08/25/05 at 20:58:37, Sean_C wrote:
There all shadows Eric, its just a lower level CH at best. Phantom clusters is a word that shouldn't be utilized in my opinion. They don't excist.

Sean.....................

And yes I feel your pain ;;D


No, they're not ALL shadows.
Yes, we should (and have been) using the term phantom clusters.
Yes, they do exist. Just because you don't have them, does not mean they don't exist. You don't have ovaries, but I assure you, they exist.  ;)

Oh, and when I have allergies, they usually strike BOTH eyes and BOTH nostrils.   :P

:-*

edited for spelling.  :-/
Title: Re: Suicide and CH/Migraine Patients
Post by Sean_C on Aug 25th, 2005, 9:20pm

on 08/25/05 at 21:10:11, nani wrote:
No, they're not ALL shadows.
Yes, we should (and have been) using the term phantom clusters.
Yes, they do exsist. Just because you don't have them, does not mean they don't exsist. You don't have ovaries, but I assure you, they exsist.  ;)

Oh, and when I have allergies, they usually strike BOTH eyes and BOTH nostrils.   :P

:-*


Nan they don't excist. I do get them they are shadows, its also possible that your pain tolerance is way above normal and you didn't feel pain, but it is a cluster headache. Its not a phantom cluster headache.

http://www.answers.com/topic/phantom

:-*
Title: Re: Suicide and CH/Migraine Patients
Post by E-Double on Aug 25th, 2005, 9:29pm

on 08/25/05 at 21:20:32, Sean_C wrote:
Nan they don't excist. I do get them they are shadows, its also possible that your pain tolerance is way above normal and you didn't feel pain, but it is a cluster headache. Its not a phantom cluster headache.

http://www.answers.com/topic/phantom

:-*


I'm with ya brother but in this case your link contradicts.....Maybe it's used as an adjective

Resembling, characteristic of, or being a phantom; illusive.

So what the researchers suggest is that you have all the autonomic features of but without pain.

Not everyone gets autonomic features with every attack, nor with every shadow.

But they show through petscan that the same hypothalmic activity that occurs during cluster does occur with the "phantom"It just does not have the pain.

Regardless, who's High Pitch?
Title: Re: Suicide and CH/Migraine Patients
Post by Sean_C on Aug 25th, 2005, 9:45pm
I'm a non phantom believer what can I tell ya. You'll never convince me otherwise either ;;D  I have shadows LMMFAO. You guys have that invisible pain I don't LOL ;;D

Sean..................................
Title: Re: Suicide and CH/Migraine Patients
Post by E-Double on Aug 25th, 2005, 9:47pm
[smiley=laugh.gif]
Title: Re: Suicide and CH/Migraine Patients
Post by Sean_C on Aug 25th, 2005, 9:51pm
Night guys  ;;D Beds calling me ;;D

See ya tomorrow ;;D

Sean........................
Title: Re: Suicide and CH/Migraine Patients
Post by kcopelin on Aug 25th, 2005, 10:14pm
what's a troll?????
Title: Re: Suicide and CH/Migraine Patients
Post by BobG on Aug 26th, 2005, 5:53am

on 08/25/05 at 21:45:56, Sean_C wrote:
I'm a non phantom believer what can I tell ya. You'll never convince me otherwise either ;;D  I have shadows LMMFAO. You guys have that invisible pain I don't LOL ;;D

Sean..................................

You just don't get it do you?
What you are saying is that because you have never experienced a phantom cluster headache then they do not exist, right?
Even though the others here have told of their experience of having the symptoms but no pain and even though it have been documented scientifically there is no such thing as a phantom cluster headache because you have never had one.
Then you bring out your dictionary that gives a definition of the word phantom that has absolutely nothing to do with headaches as proof there are no phantom cluster headaches.
And please stop the crap about phantom being another word for shadows. 2 entirely different things. Shadows are low level attacks with minor pain. Phantoms have the symptoms but no pain.
1. Cluster attacks with symptoms and pain and measurable on the Kip scale.
2. Shadows are low level attacks with symptoms and pain and measurable on the Kip scale.
3. Phantoms are attacks with the symptoms but no pain.
Do you get it now?
Maybe you should go to a cancer victims board and tell the sufferers there that cancer does not exist because you have never had it.
Title: Re: Suicide and CH/Migraine Patients
Post by seasonalboomer on Aug 26th, 2005, 7:29am
I miss all the good arguments by leaving at 5 everyday...

I just think calling them "phantom cluster headaches" is a bit dramatic.

How about:

ROACH (Reminds me of a Cluster Headache)

SWitCH's (Symptoms Without Cluster Headache)

DELN's (Droopy Eye Leading Nowhere)

ADFTD's (All Dressed Up For the Dance)

SUFTD's (Stood up for the Dance)


I just think Cluster Headaches don't need much more dramatization than they already get (and rightfully). If we start calling these things "phantoms", then we may as well really layout a flourish and call them "rotton fucking reminders of the swine-beast fucker that inhabits my hypothalamus". Let's really dress it up.

By the way, I've had'em. But I don't want to give them the respect of a cluster headache.

Scott
Title: Re: Suicide and CH/Migraine Patients
Post by BobG on Aug 26th, 2005, 8:00am

on 08/26/05 at 07:29:53, seasonalboomer wrote:
I just think calling them "phantom cluster headaches" is a bit dramatic.

Scott

You're right Scott. And calling cluster attacks headaches is very under-dramatic. It should have a better or stronger descriptive name.
BTW, we did not start calling it phantom. That name came from the scientific/medical community.
Title: Re: Suicide and CH/Migraine Patients
Post by seasonalboomer on Aug 26th, 2005, 8:21am

on 08/26/05 at 08:00:01, BobG wrote:
You're right Scott. And calling cluster attacks headaches is very under-dramatic. It should have a better or stronger descriptive name.
BTW, we did not start calling it phantom. That name came from the scientific/medical community.


Maybe it was the theatre department at a large medical school....  ;)
Title: Re: Suicide and CH/Migraine Patients
Post by BobG on Aug 26th, 2005, 8:41am

on 08/26/05 at 08:21:29, seasonalboomer wrote:
Maybe it was the theatre department at a large medical school....  ;)

Yeah, coulda been. Or the medical school at Barnum and Bailey's.
;;D
Title: Re: Suicide and CH/Migraine Patients
Post by Margi on Aug 26th, 2005, 9:16am
well, whatEVER.  I'm with BobG on this one.  Silent attacks (or phantom, if you want) ARE real.  They DO indicate some kind of cluster activity.  All of the cluster symptoms are there, except the pain.  They vanish after the duration of a normal painful attack.  For Mike, they only hit him when he's in remission.  Just because everyone doesn't get them, doesn't mean they don't exist.  And that sure as SHIT doesn't make them migraines, either!  They may not be full-blown cluster attacks, but maybe just a silent reminder that this is a life-long affliction and it's always there, just waiting in the wings.  Maybe it's an episodic thing.  Maybe chronics don't get it.

Man, what I'd give to see one of these silent attacks again now, instead of the hideous crap Mike's going through now.  
Title: Re: Suicide and CH/Migraine Patients
Post by seasonalboomer on Aug 26th, 2005, 9:21am

on 08/26/05 at 09:16:56, Margi wrote:
well, whatEVER. 


Hey, who are you whatevering?
Title: Re: Suicide and CH/Migraine Patients
Post by Margi on Aug 26th, 2005, 9:41am
no one in particular, Scott, just the rejection of the idea that silent cluster attacks exist.  

They do exist.  I've seen 'em.  
Title: Re: Suicide and CH/Migraine Patients
Post by nani on Aug 26th, 2005, 9:46am

on 08/26/05 at 09:16:56, Margi wrote:
 Maybe chronics don't get it.

 


I never had one until I started kudzu, then I had many. And I've had one with shrooms. Which for me at least, suggests that as a chronic my pain receptors never "turn off" unless I'm taking something that turns them off.
So, I wonder, do they turn off on their own in episodics?
Title: Re: Suicide and CH/Migraine Patients
Post by Frank_W on Aug 26th, 2005, 9:49am
I went the other way, on kudzu: I got the pain, (vastly reduced in intensity, duration, and frequency) but none of the other symptoms. While on the kudzu, I didn't have the hanging eyelid, the stopped-up nostril, the spiking body temperature, or the unilateral "face-melt."
Title: Re: Suicide and CH/Migraine Patients
Post by seasonalboomer on Aug 26th, 2005, 9:49am

on 08/26/05 at 09:41:56, Margi wrote:
no one in particular, Scott, just the rejection of the idea that silent cluster attacks exist.  

They do exist.  I've seen 'em.  


semantics are very important. especially here in the land of split hairs.

I've had'em happen too. But, semantically it's clearly not a cluster headache.

From my list I've now chosen ROACH (Reminiscent of a Cluster Headache). Usen conversationally, I'll be able to say that "I had a "Roach" last night, thank goodness it stayed a roach and then went away." When you get ROACH's you don't have to do anything, just let it crawl around awhile and then crawl back in from where it came. ROACH's aren't pretty to look at but they don't bite.

okay, I've carried the idea too far. reeling myself back in as I speak....
Title: Re: Suicide and CH/Migraine Patients
Post by Margi on Aug 26th, 2005, 9:55am

on 08/26/05 at 09:49:16, seasonalboomer wrote:
okay, I've carried the idea too far. reeling myself back in as I speak....


LOL kewl.  Yer learnin.  ;)

Nani, what you say makes a lot of sense.  I firmly believe that episodic and chronic cluster are different beasts in a lot of ways.  Maybe the pain receptor gate latch is broken in chronics, yet not in episodics.  I guess the next logical question then would be - do silent attacks hit any episodics while IN cycle?  I'm betting they don't.  

Also, interesting to note that alcohol isn't always a trigger for chronics  but the same is not usually true for episodics.  

Things that make you go "hmmmm....".


Definitely food for though, isn't it?
Title: Re: Suicide and CH/Migraine Patients
Post by nani on Aug 26th, 2005, 9:57am

on 08/26/05 at 09:49:16, seasonalboomer wrote:
semantically it's clearly not a cluster headache.


You're right. It's a phantom CH. And Scott, lay off the roaches willya... they're more potent than the joints and they make you carry ideas way too far.  ;)
Title: Re: Suicide and CH/Migraine Patients
Post by seasonalboomer on Aug 26th, 2005, 10:17am

on 08/26/05 at 09:57:08, nani wrote:
You're right. It's a phantom CH.  ;)


Is not.
Title: Re: Suicide and CH/Migraine Patients
Post by nani on Aug 26th, 2005, 1:24pm
Is so.  [smiley=tongue2.gif]
Title: Re: Suicide and CH/Migraine Patients
Post by Sean_C on Aug 26th, 2005, 2:19pm

on 08/26/05 at 05:53:25, BobG wrote:
You just don't get it do you?
What you are saying is that because you have never experienced a phantom cluster headache then they do not exist, right?
Even though the others here have told of their experience of having the symptoms but no pain and even though it have been documented scientifically there is no such thing as a phantom cluster headache because you have never had one.
Then you bring out your dictionary that gives a definition of the word phantom that has absolutely nothing to do with headaches as proof there are no phantom cluster headaches.
And please stop the crap about phantom being another word for shadows. 2 entirely different things. Shadows are low level attacks with minor pain. Phantoms have the symptoms but no pain.
1. Cluster attacks with symptoms and pain and measurable on the Kip scale.
2. Shadows are low level attacks with symptoms and pain and measurable on the Kip scale.
3. Phantoms are attacks with the symptoms but no pain.
Do you get it now?
Maybe you should go to a cancer victims board and tell the sufferers there that cancer does not exist because you have never had it.


Who the fuck are you Bob? Scientific what? What can you give me? Some idiotic link to some internet web page doesn't mean anything to me Bob. 1 person responded to that thread. You get it ONE.

For you to tell me there's a NEW AND IMPROVED condition of cluster headaches called "THE PHANTOM KIND" blows me away.

Get fucked Bob, you don't have a fucking clue regarding your own condition do you? Painless clusters exist in medicated cluster patients or unmedicated patients? Back it up aszhole because YOU seem to know it all. You just don't fucking get it do you. Why don't you go up to the cancer ward and tell those patients they might not have beat there cancer it might still be there in the form of phantom cells................your an assz [smiley=finger.gif]

Fuck off Bob.

Margi and Nan don't respond anymore this is between me and Boob. I apologise Margi and Nan, please cover your eyes ;;D

Sean..........................................
Title: Re: Suicide and CH/Migraine Patients
Post by E-Double on Aug 26th, 2005, 2:22pm
Easy fellas
Title: Re: Suicide and CH/Migraine Patients
Post by Sean_C on Aug 26th, 2005, 2:26pm
Eric let him come and get me himself bud, he's a big boy.

Thanks

Sean..........................
Title: Re: Suicide and CH/Migraine Patients
Post by seasonalboomer on Aug 26th, 2005, 2:29pm

on 08/26/05 at 14:19:59, Sean_C wrote:
Margi and Nan don't respond anymore this is between me and Boob. I apologise Margi and Nan, please cover your eyes ;;D
Sean..........................................


I'm going to cover mine too
:o :o
that post left burn marks on the inside of my screen   :o
Title: Re: Suicide and CH/Migraine Patients
Post by nani on Aug 26th, 2005, 2:33pm

on 08/26/05 at 14:29:13, seasonalboomer wrote:
left burn marks on the inside of my screen  


Dude... get a roach clip!
Title: Re: Suicide and CH/Migraine Patients
Post by Frank_W on Aug 26th, 2005, 2:46pm
/wiping the peanuts and corn out of my eyes and hair...  :o
Title: Re: Suicide and CH/Migraine Patients
Post by Jonny on Aug 26th, 2005, 2:52pm

on 08/21/05 at 03:01:11, CHTom wrote:
I don't usually feel my CH pain, even if it is at a kip 10


So, tell us how you know its a Kip 10?


on 08/25/05 at 06:06:47, AussieBrian wrote:
I've had "attacks" with no pain at all and thought, 'My God. If this one was real it would blow the Kip scale off the map!'


Really!...just how do you know that?

Bob, it seems that some people that get these painless clusters can actually rate them on the Kip scale. Since when can you rate pain if there is no pain?

"Cluster Headache" .....that means pain

A droppy eye and snotty nose is not a cluster headache
Title: Re: Suicide and CH/Migraine Patients
Post by Margi on Aug 26th, 2005, 3:46pm
Jonny, you're absolutely right - there is no pain involved with these silent/phantom things.  (that's why I say cluster "activity" in my post above). There's no "ache" involved in a phantom.   Rating a silent "attack" (and I'm learning to use that term loosely) on a scale of 1 - 10 is kinda ridiculous if you ask me.  It's either there or it's not, but I've never seen varying degrees of intensity with Mike's silent attacks whatchamacallits.  

Sean, seriously - about BobG.  He's a good guy and his post really does make a lot of sense.  Shadows are a form of cluster.  So are phantoms.  Just like some people are chronic, some are episodic, not every clusterhead is the same.  Not everyone experiences all of the cluster spectrum - Mike rarely gets shadows.  Only ever at the beginning or tail end of a cycle (maybe, Nani, when his pain gate is opening/closing?).  Never during cycles, never during remission.  The phantom thingies only hit him in remission.  When he's in cycle, it's all or nothing (mostly all though).  

I know you told me and Nani to shut up, but ... well, that's never stopped me before. ;)  BobG's a good guy and he's speaking wisdom on this one.  He's no more an a-hole than you are, Sean (read:  you're both good guys) and he really does know a lot about this condition.  I'm having a hard time understanding why you're having a hard time accepting the concept of phantoms.  to me, there are three degrees of cluster:  phantom/silent cluster (where only the neurological symptoms show, but pain never blooms),
shadows - the precursor of cluster headaches, lower pain level and (in my opinion, should not yet be allowed to be on the Kip Scale) but whaddoIknow;
and then full blown cluster headaches (stupid, hideous pain levels that sometimes surpass what Obiwon Kip was able to describe.)

my two cents and now, officially and obediently, shutting up. :)

Peace, Sean.  
Title: Re: Suicide and CH/Migraine Patients
Post by Jonny on Aug 26th, 2005, 4:13pm

on 08/26/05 at 15:46:29, Margi wrote:
 (that's why I say cluster "activity" in my post above).


BINGO...Margi, that seems to be along the lines of whats happening. its the "Kip 10 that I cant feel" that got my ass ;;D

And yes, Boob jr is a great guy, but if he posted to me what he did to Sean and I did not know him well.....I would have blasted his ass also.....LMAO ;;D

Fuck this!!, im going to Vegas with Bob ;;D
Title: Re: Suicide and CH/Migraine Patients
Post by Sean_C on Aug 26th, 2005, 4:20pm
A fucking troll started this whole mess, that fucker ;;D

I got nothing against Bob, he just got a little snitty thats all ;;D

No harm done, I'm going back to rowing, fuck this troll shit ;;D

Sean..........................................
Title: Re: Suicide and CH/Migraine Patients
Post by Lizzie2 on Aug 26th, 2005, 4:25pm
Hrmmm...I don't even get it.

I guess for me  - a phantom and a shadow would be the same thing - if I'm going by the definitions made above!

No shadow, phantom, whatever goes above the baseline of my chronic daily headache - so the only way I notice it is if I get the autonomic symptoms - red, tearing eye, congestion, and on down the line.  If it were based on pain being present or not, and to some degree or not, I'd have no idea.  Takes a CH hit to blow past my baseline.

So guess I'm out of the box again.

Ah well.....live and learn...daily.   :-/
Title: Re: Suicide and CH/Migraine Patients
Post by Margi on Aug 26th, 2005, 4:33pm
ok, let's take one more run at this.  

Three possible phases of cluster.

Silent Cluster. (or "phantom" if you prefer) - no pain, but some or all of the other symptoms present.  Distinguishing factor of this phase is NO PAIN.

Cluster Shadow.  Precursor to cluster pain, but much lower intensity than that of full blown cluster headache.

Cluster Headache.  full blown, head banging, reason why we're all here pain.  This phase is the only phase that registers on the Kip Scale as we know it.

Three separate faces of the beast.  Not experienced by every sufferer.

Miller time for me.  Cya Monday.  Be nice to each other!
Title: Re: Suicide and CH/Migraine Patients
Post by Sean_C on Aug 26th, 2005, 4:36pm
Guys we HAVE to let this thread die :-/

Its got a troll snickering everytime someone post.

Row elsewhere ;;D
Title: Re: Suicide and CH/Migraine Patients
Post by thomas on Aug 26th, 2005, 5:10pm

on 08/26/05 at 09:55:29, Margi wrote:
 I guess the next logical question then would be - do silent attacks hit any episodics while IN cycle?  I'm betting they don't.  
Pay up lady, Greenbacks please.
Also, interesting to note that alcohol isn't always a trigger for chronics  but the same is not usually true for episodics.  
Used to be true for me, but I can drink with no problems while in cycle now, I still get my normal hits on schedule, actually after one night of drinking 1.99 margaritas I slept through the whole night and didn't get hit until about 1:00 pm the next day.  Go figure.
Title: Re: Suicide and CH/Migraine Patients
Post by E-Double on Aug 26th, 2005, 5:51pm
Screw this!!!!!!!!!!
I still have not gotten an answer









Who's High Pitch?
Title: Re: Suicide and CH/Migraine Patients
Post by Jonny on Aug 26th, 2005, 5:58pm

on 08/26/05 at 17:51:23, E-Double wrote:
Who's High Pitch?


A spit covered dirty little who-re? ;;D
Title: Re: Suicide and CH/Migraine Patients
Post by E-Double on Aug 26th, 2005, 6:32pm

on 08/26/05 at 17:58:10, Jonny wrote:
A spit covered dirty little who-re? ;;D


http://www.howardstern.com/archives/HiPitch/hipitch_01.gif
Title: Re: Suicide and CH/Migraine Patients
Post by Jonny on Aug 26th, 2005, 6:57pm

on 08/26/05 at 18:32:56, E-Double wrote:
http://www.howardstern.com/archives/HiPitch/hipitch_01.gif


If your going to do it....Do it all the way my brother!


http://www.howardstern.com/archives/HiPitch/index.html
Title: Re: Suicide and CH/Migraine Patients
Post by BobG on Aug 26th, 2005, 9:13pm

on 08/26/05 at 16:36:56, Sean_C wrote:
Guys we HAVE to let this thread die :-/

;;D

I agree. This topic could go on forever. Time to move on.

Fuck you very much Sean. And I say that in my snittiest voice.  ;;D
Title: Re: Suicide and CH/Migraine Patients
Post by Melissa on Aug 26th, 2005, 9:40pm
This thread has given me a fucking headache.  Ya'll are a buncha nutjobs. :P

[smiley=laugh.gif] :-*
Title: Re: Suicide and CH/Migraine Patients
Post by kcopelin on Aug 26th, 2005, 10:55pm
And I still have no idea what a troll is.
PF to all (except trolls, assumming they are some hideous cave dwelling beasties that love to cause problems among otherwise reasonably, um, kind and informative people
kathy
Title: Re: Suicide and CH/Migraine Patients
Post by Sean_C on Aug 27th, 2005, 1:54am

on 08/26/05 at 21:13:18, BobG wrote:
I agree. This topic could go on forever. Time to move on.

Fuck you very much Sean. And I say that in my snittiest voice.  ;;D


I deserved that snittiness ROTFLMMFAO I can be a stubborn arse ;;D

I apologise Bob, you didn't deserve that ;;D

Sean...........................................
Title: Re: Suicide and CH/Migraine Patients
Post by Sean_C on Aug 27th, 2005, 2:05am

on 08/26/05 at 22:55:31, kcopelin wrote:
And I still have no idea what a troll is.


http://www.trollshop.net/trolls/trollparty/trollwoman.jpg

Thier not pretty :D

Sean.......................
Title: Re: Suicide and CH/Migraine Patients
Post by AussieBrian on Aug 27th, 2005, 7:23am
And as the thread fades slowly into the sunset, all the many of us who previously believed there was such a thing as a phantom cluster can rest easy.  

There's no such thing, it's all in our heads, and this is true 'cos Jonny said so.
Title: Re: Suicide and CH/Migraine Patients
Post by Kiwiinoz58 on Aug 27th, 2005, 8:05pm
Geeze I'm so glad you cleared that up Brian, I was a wondering if my imagination was working overtime. I was even trying to cope with them ::)
Title: Re: Suicide and CH/Migraine Patients
Post by Salvelinus on Aug 28th, 2005, 7:22pm

on 08/26/05 at 22:55:31, kcopelin wrote:
And I still have no idea what a troll is.
PF to all (except trolls, assumming they are some hideous cave dwelling beasties that love to cause problems among otherwise reasonably, um, kind and informative people
kathy


Kathy, it's a fishing analogy.  Trolling is a method of fishing where you dangle a lure and row around looking for something to bite.  Then you enjoy the fight.

A troll is someone who does this on a board by making a controversial statement, then sits back and enjoys the fighting and carrying-on.

I've found that it's best to just not feed the trolls . . .  ;)
Title: Re: Suicide and CH/Migraine Patients
Post by Icey on Sep 9th, 2005, 8:29am
yep , I felt suicidal more than once when i'm in my bout .  The pains that strong at the time . My young son gives me the strengh and knowing when they go again, the suns gonna shine :)
Title: Re: Suicide and CH/Migraine Patients
Post by Icey on Sep 9th, 2005, 8:34am

on 09/09/05 at 08:29:33, Icey wrote:
yep , I felt suicidal more than once when i'm in my bout .  The pains that strong at the time . My young son gives me the strengh and knowing when they go again, the suns gonna shine :)


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