Since I was 15...now 39.  Been on a variety of meds for all types of migraines.  No dice.  Just heard about CH's last year.  Tried O2 with some relief.  Have 2 or 3 sessions a year lasting between 3 days and 6 weeks. Debilitating.  My wife suffers a lot as well because of my sleepless nights and rocking and crying on the side of the bed.  I find that 2 stroke engine exhaust, nail polish and remover, cleaning solvents, depilatory creams, and hairspray send me off.  Don't know if this would help any researchers.  I was originally diagnosed with a pituitary tumor which was removed (acromegaly.)  This reduced the frequency but increased the severity.  I find that once I get a full night of sleep (rare during a cluster) I am good for a while.  Once the doctors gave me percocet and then an hour later (the next bout) I got demerol and then an hour later a morphiene IV.  This knocked me out for 8 hours and my cluster was done for 4 months.  I find that the only pain medication that does anything is Advil.  But it tears my stomach up.  I heard about some subdermal injection...does anyone know if we have this in Canada?

We have a number of folks in Canada. I'm sure they will identify themselves an say "hello".

The injection is sumatriptan, known as Imitrex (brand name) in the US. Extremely effective and fast.

Would strongly encourage you to locate a headache specialist for care. Many docs, even neurologists, have inadequate training/experience with Cluster. Too many people have wandered around for years trying to get good care until finding the right doc.

Sending a long article to give you some basic information and would suggest that you explore the buttons (left) starting with the OUCH site--both sources will give the foundation to benefit you.
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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]

Hi Mark - you are definitely not alone. 

Do you have a neuro?  Have you been diagnosed with CH as there are a great number of headache types.

I can't imagine that Advil is going to do you any more good than swallowing a handful of Smarties would do. Narcotics would be even worse.

The best thing you can do for yourself is to be sure of your diagnosis - read all the information you can absorb (see tabs on the left hand side). 

Have you tried any of the energy drinks such as Red Bull.  There are some that have been helped by slamming one of those at the onset.

O2 is your friend and when used properly seems to be what most of our folks use.

There is a fellow with the screen name of Iddy who is in Toronto and I'm sure he'll chime in when he sees this.  I'm west of Toronto in Georgetown.

Sending you PF wishes.
Carol

Hi Mark, you have found " the place to be "

There are so many people with years of experience and pain saving knowledge. Stick around and read what is available and ask all the questions you have.

Check out your PM's. Happy to help if I can

All the best Iddy :)

Yep you have that subdermal injection in Canada alright. it is imitrex - or maybe called imigran in Canada.

It is a powerful abortive and will likely only take a short while to kill each attack. It is very important for many reasons to administer it as is outlined in the "imitrex tip" found here: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Your O2 use has very likely been the old school  type. Been there, done that, but it wasn't enough for when the hits really started getting strong. There's a newer, MUCH more effective way to use it, outlined at the oxygen info link on the left of this page.

Your best bet for abortives (IMO) is to use hi LPM O2 as your first line abortive, imitrex if that fails or isn't accessible.

Hey mark,

Spent a few days rocking and crying on the side of the bed myself. So no you are not alone.

Crazy aint it? Bet you never thought you would find someone who understands let alone knows what it feels like. Sorry it took us so long to find you, but we got ya now...

Coach Bill

I was finally diagnosed with CH's last year after my last bout.  It is so hard when people cannot understand the amount of pain that we go through.  I got very sick of people saying "Oh yeah, I get migraines too!"  When you have a migraine you don't smash your head on the floor and weep uncontrollably crying to whatever deity you have to stop the pain.  I feel better just knowing that there are some people that understand what 10/10 pain really means.

Yes, how annoying is it when someone says "oh, I suffer with migraines too, I had one last week!" I feel like punching them (and I'm not a violent person)!!

Caron

Ya, I get Migraines to, the kind that feels like someone has grabbed your brain with a pair of pliers and is twisting it as they are pulling it out of my eye and out the side of my head at the same time, you know, 5 times a day every day for 8 weeks, no sleep, ya, I get migraines to.

I felt the same way about a week ago, It was amazing to find others that experience the same pain and understand.
Steve

Welcome.  Stop the pain meds!  Good luck!