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Hi from Eastern Canada (Read 772 times)
Mahosian
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Hi from Eastern Canada
May 20th, 2010 at 1:25pm
 
Hello fellow clusterheads (which I have recently read is what most of us refer to ourselves as),

I'm from Eastern Canada, and was "diagnosed" with cluster headaches about 1 month ago. I use quotation marks because all the doctors I have seen have suggested that it's likely cluster headaches, but all seem to have the common hope that it's something else more mild, which I ironically suspect is because that would be easier on their heads.

I just turned 23, midway through my second-ever cluster, which is still ongoing. This cluster started mid-March, and, along with occasional irregularity, I get a 45-minute headache every morning that either wakes me from sleep or occurs very shortly after I awaken. The irregularities are: sometimes no headache at all - sometimes late in the evening in addition - sometimes at 1-2 a.m. in addition.

I'm relieved that this forum exists - I have lots of family and friends that are quite supportive, but I think it would be good for me to connect with co-sufferers.

I just have a couple of introductory questions, if anyone is reading this and wants to help a brother out.

Is 22 a young age to first develop cluster headaches? Has anyone else developed them from a young age?

Also, I was recently shown a collection of clips from some documentary about cluster headaches by one of my friends. I would call my headaches excruciating at the very least, but I don't tend to behave how everyone else depicted behaved. My question is - will future clusters likely increase in severity until I eventually reach that point? or is there discrepancy between how people react to a headache? I feel as though the way in which I react discredits the severity of the attack for my witnesses.

Maybe this is a bit too long - thanks for reading, if you've gotten to this point now.
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Bob Johnson
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Re: Hi from Eastern Canada
Reply #1 - May 20th, 2010 at 2:34pm
 
You are at the young-ish end of range for onset but this has no significance.

First, if all possible, find a headache specialist. Most docs, even neurologists, do not have training and/or experience to  handle complex headache disorders very well.

Second, start learning. Our collective experience is that we often know more than our doctors and many of us have had to teach our docs how to care for us. (And that works well if you have an open-mnded doc.) But, nevertheless, not a substitute for specialist.

Beyond the articles below, start exploring the buttons, left, starting with the OUCH site. And don't be shy about asking questions. Our addiction is to helping & informing!
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Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (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]
===
Explore: 
A new (for me) site which is worth your attention: medical literature, films, plus the expected information
about CH.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
======
PDF file, below.

There is much more but this is some basic information help you get grounded. In the end, self-instruction is a source of comfort--emotional as well as physical.
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Bob Johnson
 
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shaggyparasol
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Re: Hi from Eastern Canada
Reply #2 - May 20th, 2010 at 4:47pm
 
Hi Mahosian.  Nope, not too young.  A lot of people here started in their teens.  18 for me. 

They don't have to get worse and people seem to have different reactions to the pain or different levels of pain.  So the people on the videos may not look like you, they don't usually look like me.  Also some people here go into a deep meditation when getting hit and say they sit perfectly still and work on their breathing. 

Since this is new for you, there are still some diagnostic questions.  It may take several years to really fine tune everything.  In the meantime see what works.  Lots of techniques on this site.  Keep reading and try stuff. 

The cluster portion of my life has been a disaster.  BUT, if I knew at your age what I know now it would have been a big nuisance, not a disaster.  So you are quite fortunate to be where you are right now! Cool

Good luck.

--Shaggy
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Kat
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Re: Hi from Eastern Canada
Reply #3 - May 20th, 2010 at 6:56pm
 
I am also new to this site and am a chronic sufferer of CH.  I have varying degrees of pain throughout the day and react in different ways when the pain is out of control.  Sometimes I hum to myself, don't know why, sometimes I cry, pound my head with ice, other times I pray, "take me away". 
No matter how you react, I can tell you this, I know your pain is real!
GL to you and may God bless you in a special way.
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Guiseppi
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Re: Hi from Eastern Canada
Reply #4 - May 20th, 2010 at 10:50pm
 
I've never been a "run in circles and yell" CH'er. I'm the wrap my arms around my head, lay down on the bed and pump the invisible bicycle type. I also started at around 18, but it wasn't until later in life I realized that's what was happening. They started out being mild 45-90 minute headaches that really hurt and made my eye red!

As far as predicting what CH will do as you get older. It's just too un predictable to put forth the effort. The trick is to learn what works for you and always be ready to do battle. You need a good prevent med, the one you take every day to cut down the severity and frequency of your attacks, and a good abortive regimen, which will hopefull include oxygen.

Welcome to the forum, hoping we can help ya!

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