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)!

Hi Jeremy. You need to get with a neurologist that specializes in headaches.
The ibuprofen and tramadol  you’re taking wouldn’t do you much good against cluster headaches. Look under the ‘oxygen info’ button on the left side of your screen.
And, Read read read this site. There is more cluster information here than you’ll find any where on earth.
Oh, by the way, I’m also in windy cold Vegas.

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).

Hey Jerm,
Glad you found our forum!  And welcome! (tho of course none of us wish you had to be here).
The oxygen will be a great relief to you, it was to me during this last cycle (which was also the first time I'd tried it).
Just like BobG said: read, read, read. This is the site where you'll become the expert and actually coach your Doc in his treatment plan for you, should he be wise enough to listen!
Other members will be along in due time to chime in and give their encouragement.
Till next time, pour yourself a non-alcoholic comforter and may you be pain free quickly!
-Gary

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

oops sorry my last message was for jeremy.
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: 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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PDF file below.
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Explore the OUCH site, left, and its many links.

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Thanks everyone for the welcome.

Its been two days since my last major attack.  I can still feel it just behind my left eye like it wants to hit me with a brick and my anisocoria and redness hasn't gone away yet, but I'm hoping I'm nearing the end of this cycle so I can have a glass of wine again!  There's something about us IT professionals where we want to drink.  Heavily. :'(

I've got an appointment next week with my GP (stupid HMOs), so we'll see how things go from there.  Something tells me I'll be going through a lot of toner with all the documentation I'll be taking with me!

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.

...and keep in mind that if you don't want to wait for an O2 prescription, many here just get the same O2 from a welding supply place without prescription. Cheap.

If you want to be super prepared for the doctor thing, you could start calling around now to find out whether any of the medical supply places have the right regulator and mask (usually they don't), and if they don't you could order them online so they'll be ready to go when your O2 is.

JC,

Here's some info you need to take with you when you ask for your Rx for oxygen therapy.  It's at the following link.  Print it out and take it along for your next appointment.

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

This is the EFNS guidelines on the treatment of cluster headache and other trigeminal-autonomic cephalalgias.  It lists oxygen therapy at 15 liters/minute as the first abortive of choice by some of the top neurologists in the world who treat more CH'ers in a week, than most general neurologist treat in a lifetime.

Ask for the Rx to be written for a flow rate of 25 liters/minute with a non-rebreathing oxygen mask and don't settle for any flow rate less than 15 liters/minute.  If your neurologist balks at that flow rate, ask for a written explanation why your neurologist refuses to write the Rx for this flow rate.

Play hard ball...  It's your head not your neurologist's

If your neurologists sees the light and agrees to write the Rx for 15 to 25 liters/minute... order up the large home oxygen therapy cylinders...  The small bottles like the E-size oxygen cylinders are only good for 3 aborts so are ok for work... but you'll need at least three of the big M-size oxygen cylinders for a one month supply at an average of three CH a day/24 hrs.

Tale care.

V/R, Batch

Thanks, Batch.  I'll bear that in mind.