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SlomoSapien

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Ooooh golly
Jan 17^th, 2010 at 7:22am

So as of 3 days ago I'd never even heard of cluster headaches but, like the rest of you I guess, after reading the symptoms it all makes sense.

I'm 23 now and have had them mid-summer and mid-winter for 2 years now, doctors just telling me I'm stressed and maybe my ladyfriends are abusing me. It is a relief to know that this isn't entirely in my head (are bad puns on that list of offenses I barely read?) It also seems both grim and promising reading all the posts from sufferers... knowing that this new pet may be with me for a long time....

Thanks for the helpful posts ... I'll be sure to keep reading to hopefully find some treatment that will help

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"I do not envy the headache you will have when you awake. In the meantime, dream of large women"

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Bob Johnson

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Re: Ooooh golly
Reply #1 - Jan 17^th, 2010 at 9:19am

This article is a good overall...Then would suggest you explore the OUCH site (left) and the many internal links it offers.
=========

Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

(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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Bob Johnson

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Iddy CH.com Alumnus Offline Smile Posts: 486 Toronto,Canada Gender:	Re: Ooooh golly Reply #2 - Jan 17^th, 2010 at 10:49am Welcome...if you read what is available here on the site you WILL find treatments that will help you. Check out the O2 info tab...a great start as it helps so many of us. Where in Ontario are you living? All the best Iddy
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bejeeber

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Re: Ooooh golly
Reply #3 - Jan 17^th, 2010 at 11:22am

Iddy wrote on Jan 17^th, 2010 at 10:49am:

Welcome...if you read what is available here on the site you WILL find treatments that will help you.

What Iddy said!

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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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Lefty

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Re: Ooooh golly
Reply #4 - Jan 18^th, 2010 at 5:44am

SlomoSapien wrote on Jan 17^th, 2010 at 7:22am:

maybe my ladyfriends are abusing me.

Lucky Boy...

On a more serious note, unfortunately GP's know very little when it comes to headaches. It is very important that you get a referral to a headache specialist whom can offer you a proper diagnosis.

Gather as much information from the site as you can so you are well prepared for your next visit to your Doc. Unfortunately CH's can get a lot worse than Ooooh golly....!

Good Luck...!

Lefty...!

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SlomoSapien

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Re: Ooooh golly
Reply #5 - Jan 19^th, 2010 at 6:16am

Im living in Ottawa but quickly tiring of the PC gov't pseudo-socialist nouveau-riche wannabes, Heading back to Farmland soon hopefully.

I think the first thing i'll be trying is the waterwater treatment.
From what I gather clusters are caused by a dialation of a blood vessel which asserts pressure on a nerve behind the eye. Thinning the blood a bit may help that
Has this worked for anyone else other that the one who posted that writeup?

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"I do not envy the headache you will have when you awake. In the meantime, dream of large women"

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Kevin_M

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Re: Ooooh golly
Reply #6 - Jan 19^th, 2010 at 7:51am

SlomoSapien wrote on Jan 17^th, 2010 at 7:22am:

So as of 3 days ago I'd never even heard of cluster headaches but, like the rest of you I guess, after reading the symptoms it all makes sense.

What brought you here to read of the symptoms? Looks like a frustrating doctor's opinion and desire of further searching. Being three days, do you mean you were not able to mention this new found possibility of clusters when visiting your doctor to get a response? What kind of doctor? I mean one who may be familiar with them? Sounds like his mind gave an underrated, light, pre-notion as a starting point from a run-of-the-mill previous experience. Not that it's might seem adequate, but what did he recommend?

Quote:

doctors just telling me I'm stressed and maybe my ladyfriends are abusing me.

Sounds like more of a shrink or just guessing, but saying these type of symptoms can arise from coping with women seems far fetched. Ok, there are stress headaches possible, but broad stroking a cause of such intense pain as such makes it seem like an extreme inability to cope, actually unreasonable to encounter. I'm assuming an apt description of what you encounter was relayed, sounds episodic if clusters.

I don't know what challenges you're enduring with relationships, but a 30 year experience with a most combative, obstinate, firestorm has ever yet to leave me continually writhing on the floor pleading with God. And should you separate from these relationships, is it supposed these will stop?

Quote:

Thanks for the helpful posts ... I'll be sure to keep reading to hopefully find some treatment that will help

Explore, I can understand the frustration after knowing you need to see a doctor about these. I'd suppose after over-the-counter headache remedies weren't cutting it.

Quote:

Im living in Ottawa but quickly tiring of the PC gov't pseudo-socialist nouveau-riche wannabes, Heading back to Farmland soon hopefully.

Sounds like the sometimes grating 80's yuppie epidemic infecting personalities of the time. Impressive, isn't it? Wink

If this was perhaps your first experience for diagnosis, don't give up, and meanwhile hope you find help here. Also, other Canadians may have particular familiarity with the system obstacles in medcare.

Welcome.

Lefty wrote on Jan 18^th, 2010 at 5:44am:

Unfortunately CH's can get a lot worse than Ooooh golly....!

Yep, haven't heard that expression yet.

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« Last Edit: Jan 19^th, 2010 at 8:01am by Kevin_M »

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SlomoSapien

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Re: Ooooh golly
Reply #7 - Jan 19^th, 2010 at 8:08am

What brought me here was that I was told it was tension headaches. My father used to get tension headaches and I was near certain this was not the case. I had tried ibuprofin which didn't even touch it. I've been prescribed T3, which takes the edge off about half the time.
My pains are not as severe as some people have described on here. Its still quite painful, but not always the eye-gouging, suicidal-thought-inducing pain others seem to have.
Can they start less severe and progress to much worse? Or am I most likely misdiagnosing.
I have the symptoms described ( localized pain behind/aound the eye, one sided, agitation, tearing on one side) its just not that mind-altering pain

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"I do not envy the headache you will have when you awake. In the meantime, dream of large women"

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Kevin_M

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Re: Ooooh golly
Reply #8 - Jan 19^th, 2010 at 8:35am

SlomoSapien wrote on Jan 19^th, 2010 at 8:08am:

Can they start less severe and progress to much worse?

Hard to say. My first, full, early episode was bared undiagnosed and untreated. Upon a return, these needed attention. It became intense enough to think this is a no migraine, or patterned like one. Diagnosis is important, correct treatment, handling the repeated, anytime, anywhere attacks and ability to sleep all becomes much too an encumbering embrace to bare. Best to find out if this may be.

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Guiseppi

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Re: Ooooh golly
Reply #9 - Jan 19^th, 2010 at 11:52am

The correct diagnosis is critical. Mine started in my late teens and thinking back I doubt any of those ever went above a 5 or 6. Wasn't until my early 20's I really started getting creamed, scared my wife enough she drug me to the doctor!

If you're not already doing so start keeping a headache diary. When they start, how fast they build, how high they build, how long they stay at peak, how fast they go away, describe the pain as best you can. Sure sounds like you have CH but getting an accurate diagnosis is critical to getting an effective treatment regimen, and the diagnosis will be in the details!

The WATER WATER WATER treatment.......see the tab on the lft Water X3, has proven beneficial to many. Certainly worth a shot.

Welcome to the board, hope we can help you hurt a little less!

Joe

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"Somebody had to say it" is usually a piss poor excuse to be mean.

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