Greetings one and all.  My name is Jeremy and I suffer from CH.

I work in the IT department for an off-strip (yet still famous) hotel and casino in Las Vegas, NV.  On March 17th, I had the scare of my life.

I'd been getting these chronic headaches (10 on the pain scale) for around three weeks.  I'd had them about 6 months before, but the GP chalked it up to migraines, put me on painkillers and shot me out the door.  On the 17th, I went back because I was getting weird eye issues this time.  They had a look at my pupils and found they were different sizes.

Next thing I knew I was in the ER for a CAT-scan.  The ER doc said that if it were just the headaches, I'd be going home, but because of the eyes I was going to be admitted.  They did an MRI, MRA, and chest xray - all which showed nothing.  Finally a neurologist met with me and told me I suffer from Cluster Headaches.

In one sense, I was relieved.  It wasn't a tumor, aneurysm, or carotid artery dissection.  On the other hand, I was up at 1:00am this morning popping as much ibuprofen and tramadol as safely allowed.

In the sense that misery loves company, it's amazing to see I'm not alone and that this is a seriously large forum.  On the other hand, I think it's safe to say that none of us want to be here!

I look forward to chatting with you all.  May your days be pain free (and may this phase of headaches end)!

Thanks, Bob.  I've actually been pricing out the O2 setup (D-tank, regulator, non-rebreathing mask).  I need to re-visit with my GP now that I have the diagnosis.  Hopefully they'll listen and allow me a prescription for O2.  I'll be printing out the Mayo Clinic, WebMD, and even the Wikipedia articles if I have to!

At this point, the Tramadol is the only thing I've been given a prescription for.  Right now I'm kicking myself for going with the HMO plan at work rather than the PPO.

Cold?  Windy?  Vegas is never like that (says the man wearing his jacket again after only taking it off for a week).

hi bob,
I went through the same nonsense with my doctor for about 7 years. my list of scans is almost endless. you need to know first of all if you are a ch sufferer, show your doctor some of the info you have collected from this site, this might point him in the right direction in diagnosing you. If you are a cluster head(and I hope you aren't) verapamil have worked wonders for me as a preventative. you will however need to give it some time to build up in your system. oxygen works best to abort a hit. I am sure advice from some more knowledgeable cluster heads will be coming in soon pay attention, it is the only thing that keeps us sane. Hold on you're not alone
suresh

Essential that you start to learn about Cluster for even many docs lack deep knowledge and experience. Your knowledge will help protect you and have a better sense of when you are being treated appropriately.

NO pain meds! They can result in increased headaches.

READ:




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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PDF file below.
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Explore the OUCH site, left, and its many links.

Spoke too soon.  The Beast decided to climb back in my skull and beat me up last night.  Two hour hit starting at 9:00pm as I was just getting ready to go to bed at a Kip of 10 without an emergency room visit (no point in injuring myself since it doesn't seem to help).

The sooner I can get some O₂ prescribed, the better.