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New CH.com Forum › Cluster Headache Help and Support › Cluster Headache Specific › What does your CH pain "look" like?

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What does your CH pain "look" like? (Read 11766 times)

UnderTheRadar CH.com Old Timer Offline Literally Posts: 383 Texas Gender:	Re: What does your CH pain "look" like? Reply #25 - Dec 18^th, 2008 at 2:47pm Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
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BlueDog CH.com Junior Offline I Love CH.com! Posts: 27 SoCAL, USA Gender:	Re: What does your CH pain "look" like? Reply #26 - Dec 18^th, 2008 at 3:44pm OUCH! Bluedog
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Nicholas CH.com Newbie Offline I Love CH.com! Posts: 1	Re: What does your CH pain "look" like? Reply #27 - Dec 18^th, 2008 at 3:59pm like a razor sharp electrified harp string pressing against the back of my eye, plucked by some infernal madman squatting in my head
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Rolomatic Ex Member	Re: What does your CH pain "look" like? Reply #28 - Dec 18^th, 2008 at 4:30pm Like Chucks video... Feels like a hot soldering iron in the back of my eye! Roland.
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UnderTheRadar CH.com Old Timer Offline Literally Posts: 383 Texas Gender:	Re: What does your CH pain "look" like? Reply #29 - Dec 18^th, 2008 at 4:58pm You know, I told my doc it's like Charles Mingus playing "C Boogie" on my optic nerve, and god bless'er, she got it!!
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thebbz

Ex Member

Re: What does your CH pain "look" like?
Reply #30 - Dec 18^th, 2008 at 6:29pm

Quote:

(the hypothalamus thing is only a theory),

Abnormal grey matter growth in the hypthalamus has been confirmed with PET scans of cluster patients and is not a theory.
the bb

Quote:

Classified as a trigeminal autonomic cephalalgia, cluster headache is characterized by recurrent short-lived excruciating pain attacks, which are concurrent with autonomic signs. These clinical features have led to the assumption that cluster headache's pathophysiology involves central nervous system structures, including the hypothalamus. In the past decade, neuroimaging studies have confirmed such clinically derived theory by uncovering in vivo neuronal changes located in the inferior posterior hypothalamus. Using a variety of neuro-imaging techniques (functional , biochemical , and structural ) in patients with cluster headache, we are making improvements in our understanding of the role of the brain in this disorder. This article summarizes neuroimaging findings in cluster headache patients, describing neuronal changes that occur during attacks and remission, as well as during hypothalamic stimulation.

« Last Edit: Dec 18^th, 2008 at 6:54pm by N/A »

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CH-HELL Ex Member	Re: What does your CH pain "look" like? Reply #31 - Dec 18^th, 2008 at 8:58pm Ray wrote on Dec 17^th, 2008 at 8:15pm: Like a red hot metal bar, dipped in acid, pushing out my right eye... Ray i242.photobucket.com/albums/ff287/raymond759/clusterheadachedrawing.jpg Edited to add CH Demon drawing -- Not mine! I have a tattoo very similar too this picture.
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Layla328 CH.com Hall of Famer Offline Posts: 804 Boston Gender:	Re: What does your CH pain "look" like? Reply #32 - Dec 18^th, 2008 at 9:21pm Jeannie, I'm right with you on that one!
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DonnaH_again

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Re: What does your CH pain "look" like?
Reply #33 - Dec 18^th, 2008 at 9:32pm

That picture of the devil with his fist in the sufferers eye was drawn by one of our members by the name of Fletcher (sp?) It is copywritten.

Dr. Goadsby has confirmed that the hypothalamus of a ch sufferer is larger than those who don't have ch. Please use the menu to the left to find articles and archieved threads in regard to it's action and importance in the cause of cluster headache.

My headaches started with a blow torch which got hotter and hotter until it melted my skull on the headache side including my eye, the bone surrounding my eye and nose.

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lwkreu CH.com Newbie Offline I Love CH.com! Posts: 4	Re: What does your CH pain "look" like? Reply #34 - Dec 18^th, 2008 at 11:51pm Red hot crowbar thrust in through the base of my skull and scraping the back of my eyeball. Or, amateur brain surgery without anesthesia. Maybe, slow death by being struck in the head by a ball peen hammer for months on end.
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lwkreu CH.com Newbie Offline I Love CH.com! Posts: 4	Re: What does your CH pain "look" like? Reply #35 - Dec 18^th, 2008 at 11:53pm Nice visual.
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Rolomatic

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Re: What does your CH pain "look" like?
Reply #36 - Dec 19^th, 2008 at 12:11am

lwkreu wrote on Dec 18^th, 2008 at 11:51pm:

Red hot crowbar thrust in through the base of my skull and scraping the back of my eyeball. Or, amateur brain surgery without anesthesia. Maybe, slow death by being struck in the head by a ball peen hammer for months on end.

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Jesus, I start crying just watching it every time I see it! It takes a lot of balls to do a video like that and post it for all to see. Cry

EDIT TOO ADD: For up to an hour at a time whenever the interrogator pleases... Lips Sealed

« Last Edit: Dec 19^th, 2008 at 12:52am by N/A »

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gizmo

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Re: What does your CH pain "look" like?
Reply #37 - Dec 19^th, 2008 at 2:25am

Quote:

(the hypothalamus thing is only a theory),

Abnormal grey matter growth in the hypthalamus has been confirmed with PET scans of cluster patients and is not a theory.
the bb

True, but it isn't clear if this is the reason or a symptom.

The hypothalamus theory sounds valid but I yet have to see a proof.
Until then it is only a theory - at least to me.

Oliver

« Last Edit: Dec 19^th, 2008 at 2:38am by gizmo »

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George

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Re: What does your CH pain "look" like?
Reply #38 - Dec 19^th, 2008 at 2:52am

A little of this:

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

And a little of this:

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

And a little of that:

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Best,

George

"Whoever loveth me, loveth my hound." (Thomas More, author of "Utopia", and Chancellor of England. 1477-1535)

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Jeannie

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Re: What does your CH pain "look" like?
Reply #39 - Dec 19^th, 2008 at 10:41am

Quote:

lwkreu wrote on Dec 18^th, 2008 at 11:51pm:

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Jesus, I start crying just watching it every time I see it! It takes a lot of balls to do a video like that and post it for all to see. Cry

EDIT TOO ADD: For up to an hour at a time whenever the interrogator pleases... Lips Sealed

I too cry when I see Chuck's video. Then when I read his posts and see what a remarkable attitude he has it moves me even more. He is an inspiration to me...really you all are, but Chuck especially. When I compare my battle for just four or six months a year to his daily battle, I have it really easy. I am so looking forward to meeting him in Jan!

Jeannie

George, Ya know how people will sometimes say, " I had a CH once"?

Well... I had a boulder fall on my car like that....once! LOL!

"It's all a grand illusion when you think you're in control." ~ Kenny Chesney

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Layla328

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Re: What does your CH pain "look" like?
Reply #40 - Dec 19^th, 2008 at 2:31pm

Oliver,

I too believe it is a valid theory. However, I am curious just what one should infer from this knowledge (abnormal cells in hypothalamus). How does this specifically cause the cluster headaches?
In my opinion, and it has become quite a humble one

after being here (probably a good thing) I think that CH bears many unexplored similarities to bipolar illness, for which, to the best of my knowledge that illness is not blamed on abnormal brain structure. A primary thing that needs to be looked at (again in my very humble opinion) is why the illness is seasonal (so to speak) and in between the person returns to normal functioning (in the majority of cases--believe me I know not all do)--but to uncover what is causing CH that "phenomenon" needs to be looked at VERY carefully.

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gizmo

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Re: What does your CH pain "look" like?
Reply #41 - Dec 19^th, 2008 at 2:48pm

In my opinion clusters are the result of different circumstances one of them being a messed up hypothalamus (leading to wrong timing of hormone disposal and the like).

The hypothalamus would at least explain the seasoning for the episodics.
I'm chronic myself and even in my episodic past I never had clusters bound to seasons - well at least not obvious ones (season in this case isn't necessarily in an annual context).

Side note: I also believe that Cluster Headache as a diagnose itself isn't the whole truth. There are far too many different forms of clusters (which respond or don't respond to different treatments) to be a singular, well defined and distinguished disease.

Oliver

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Nyteguardyan CH.com Junior Offline Someone pluck out my right eye please. Posts: 41 Port Republic, Maryland Gender:	Re: What does your CH pain "look" like? Reply #42 - Dec 19^th, 2008 at 3:05pm The pain is like a supernova exploding behind my right eye. The white hot fire of the sun compressed into my brain. The pressure on the back of my eye feels equal to the pressure the jaws of life pushing a door away from the frame of a car.
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Jeannie

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Re: What does your CH pain "look" like?
Reply #43 - Dec 19^th, 2008 at 3:15pm

I wish I could remember where I read this... most likely here somewhere, but I have read that some feel that CH is more like a seizure disorder than a HA disorder. In our cases we experience pain rather than convulsions. I thought that this was an interesting concept.

I personally believe that if my seretonin weren't all messed up, I'd be in good shape. It seems that most of my medical issues have to do with hormones. I have had CH since I was ten... have had issues with depression since I was a teen.... as an adult I was Dxed with Fibromyalgia. If we could just fix my seretonin... I'd be perfect! Wink

Jeannie

"It's all a grand illusion when you think you're in control." ~ Kenny Chesney

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DonnaH_again Ex Member	Re: What does your CH pain "look" like? Reply #44 - Dec 19^th, 2008 at 3:23pm For those of you doubting "theories", please click and read........... Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or If you go to our left margin and click on the OUCH button, you are in for a great education about cluster headaches.
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Jeannie

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Re: What does your CH pain "look" like?
Reply #45 - Dec 19^th, 2008 at 3:45pm

Hey Donna, Thank you for the the info. I have read SO many times here, that people with CH are not light and sound sensitive. I was glad to read differently! I am actually afraid sometimes to admit some of my symptoms for fear of others here thinking that I don't really have CH. I am so sensitive to sound during a hit that the sound of my husband softly breathing while he sleeps even bothers me. During a cycle, driving in a car when the sun flickers from behind trees that I am passing will trigger a hit.

I was talking with Jackie and she mentioned that Blake has shadows even when not in cycle. I do too. I'm just glad to know that I'm not alone in all my symptoms that don't conform to " classic" CH.

Thanks again. BTW, I don't doubt the theories. I'm so glad that someone out there is taking the time to come up with some! Someday they'll lead to a cure!

Jeannie

"It's all a grand illusion when you think you're in control." ~ Kenny Chesney

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gizmo

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Re: What does your CH pain "look" like?
Reply #46 - Dec 19^th, 2008 at 3:47pm

Quote:

May et al.: PET and MRA findings in cluster headache and MRA in experimental pain Neurology 2000;55

Using the advanced method of voxel-based morphometry, it has been suggested that there is a correlation between the brain area activated specifically in acute cluster headache--the posterior hypothalamic grey matter--and an increase in grey matter in the same region.

Quote:

Goadsby PJ., Pathophysiology of cluster headache: a trigeminal autonomic cephalgia. Lancet Neurol. (2002)

Observations of circadian biological changes and neuroendocrine disturbances have suggested a pivotal role for the hypothalamus in cluster headache.

"Suggested" doesn't sound like a proof to me.

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Rolomatic Ex Member	Re: What does your CH pain "look" like? Reply #47 - Dec 19^th, 2008 at 3:56pm Donna & Jeannie, Before I started lithium I was horribly light and sound sensitive. I hid like a vampire in a quiet casket all the time… Roland.
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UnderTheRadar CH.com Old Timer Offline Literally Posts: 383 Texas Gender:	Re: What does your CH pain "look" like? Reply #48 - Dec 19^th, 2008 at 5:11pm I have a strong hunch that this has to do with the Affective Spectrum Disorders, of which I have about half...and they are all sometimes treatable with the same meds...but it's gonna be eons before they really understand any of this.
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thebbz Ex Member	Re: What does your CH pain "look" like? Reply #49 - Dec 19^th, 2008 at 7:20pm Quote: "Suggested" doesn't sound like a proof to me. If you have something better, bring it to light. the bb
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