not had any now for about 7 months ....but i was woken up by ......? im not sure my own body n mind knowing something is astray......the pain wasnt in full swing not even close ..it was like a reminder lettin me know its there type of thing...near right side of temple ..my right nostril was blocked and still is whilst my left nostril is as clear as the day....
so i took 1 sumitriptan ....and now on edge ...i know im now on full alert.....im glad my body recognised it was happening and allowed me to combat it in its early stage (shadow ) whatever we call it .........i know i need to get o2 tank now....

That's how mine come back. The first few are so mild you try and convince yourself it's not really him returning. But inside, you know. Get your tools in order, oxygen, prevents etc. Don't let him catch you flat footed...that hurts. Wishing you a short cycle with a long remission this go round.

Joe

thank you joe ...and i will do ...no point in denile and gettin caught out ...if its back its back ....
can i ask you a question ...obviously you dont have to answer im just curious ...
you refer to yours as him ...why is that?
is there any reason?

adamski wrote on May 29^th, 2011 at 10:25am:

can i ask you a question ...obviously you dont have to answer im just curious ... you refer to yours as him ...why is that? is there any reason?

I'm not sure why any of us do that. It's a condition, not an entity. And it's a condition that can be dealt with. To give it a persona almost gives it power over us that we are incapable of controlling.

Brew wrote on May 29^th, 2011 at 11:14am:

adamski wrote on May 29th, 2011 at 10:25am: can i ask you a question ...obviously you dont have to answer im just curious ... you refer to yours as him ...why is that? is there any reason? I'm not sure why any of us do that. It's a condition, not an entity. And it's a condition that can be dealt with. To give it a persona almost gives it power over us that we are incapable of controlling.

   Ain't that what I been sayin all along?

         Potter

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There is no predicting about Cluster. The variety of experiences is striking and your best defense is being aligned with a good headache doc for care.

(I'm assuming England?) Too many messages from your countrymen about the poor quality of care for headache from many local docs. Suggest you contact your excellent support group for guidance in dealing with your healthcare system for you have a right to be sent to a skilled doc/clinic.

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Essential that you learning about Cluster so that you can learn how to seek good treatment. Suggest you wade thru the following article and look at the two web sites at the end.




Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
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A couple of sites which are worth your attention: medical literature, films, plus the expected information
about CH.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Search under "cluster headache"

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and explore the buttons, left, starting with the OUCH site.
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Print out the PDF file below. It gives you a good overview of widely used treatments.

In addition to the sumatriptan the doc should also have you on a med which (preventives) reduce the number and severity of attacks. (In the PDF article.)

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I call him the beast because it makes it something I can identify, and once I've identified him I can fight him. Just my way of coping with CH! ;)

Joe

Brew wrote on May 29^th, 2011 at 11:14am:

adamski wrote on May 29th, 2011 at 10:25am: can i ask you a question ...obviously you dont have to answer im just curious ... you refer to yours as him ...why is that? is there any reason? I'm not sure why any of us do that. It's a condition, not an entity. And it's a condition that can be dealt with. To give it a persona almost gives it power over us that we are incapable of controlling.

….that is a question I have pondered myself these many years. Even before I’d ever heard of ch.com I referred to “the beast”…that it was the same reference I found when joining only confirmed. Doesn’t mean I don’t agree with Brew …but I think it’s one of those intellectual/emotional (Jefferson would say head vs heart) struggles….that I have never quite figured out.

Of course it’s just a “condition”…a freaking bad one…but only “just”. You can reason that one out…and THEN….what other condition has such a malevolent seeming course?
Indescribable pain…you beat it back…use ALL your measures…FINALLY breath a sigh of relief…and BAM…back again. Sometimes nothing works and the hit WILL come.  The most inopportune times, surprising times, over-past-and above ANY prayers. A shadow or a precursor? I swear I can hear a laugh, or feel a bony hand on the shoulder…maybe a coping mechanism just to SURVIVE…blame it on an “entity” ….hate IT…dunno.

I want to be REAL careful here…there are other conditions that go way beyond pain…no matter how bad a pain…that are truly life threatening. (It must be remembered…ch isn’t.)
Many resemble an avalanche of inevitability…no damn beast that I can figure…they just are…have seen it…am living it.

So…intellectually… I KNOW…emotionally…not there yet.

Best,

Jon

Don't get me wrong - I've done it. Many of us have. I still do from time to time. But any time I go back and read where I've called this f*ckstick "the beast," it usually forces me to rethink why I did that. Most likely it's because I felt particularly helpless when recalling what it's done to me and my family.

And it's usually when you're losing a battle when helplessness sets in.

Brew wrote on May 29^th, 2011 at 6:28pm:

Don't get me wrong - I've done it. Many of us have. I still do from time to time. But any time I go back and read where I've called this f*ckstick "the beast," it usually forces me to rethink why I did that. Most likely it's because I felt particularly helpless when recalling what it's done to me and my family. And it's usually when you're losing a battle when helplessness sets in.

I got it Bill...no worries Brother ;)

Brew wrote on May 29^th, 2011 at 11:14am:

a persona almost gives it power over us that we are incapable of controlling.

Yes, there was a time that was, untamed as a beast and being regularly preyed upon.




Brew wrote on May 29^th, 2011 at 6:28pm:

Don't get me wrong - I've done it. Many of us have. I still do from time to time. But any time I go back and read where I've called this f*ckstick "the beast," it usually forces me to rethink why I did that. Most likely it's because I felt particularly helpless when recalling what it's done to me and my family. And it's usually when you're losing a battle when helplessness sets in.

Agree. 


Beast fits an expression of its cruelness, and reminder of how it can be if we were less proactive.  Learning from what is shared here is restoring and has gratefully changed many, self included.