I've been a sufferer for about 18 years ago, and never heard about cluster headaches until 2 years ago. I had just come off a 6-week episode and discovered the topic on the Internet, and eureka!

I started these episodes with a twice-yearly, Spring/Fall schedule, with episodes lasting precisely 14 days (including a day or two ramp up and taper off periods). I stuck with the "it has to be some sort of allergy/infection" mentality for years, even when the episodes changed into less frequent, but longer episodes.

I went to a top sinus doctor in Beverly Hills, and since the left sinus (my affected side) was "much less functional" than the other side, I had surgury. I moved from L.A. to Seattle a couple years later, and still had no episodes since the surgury... until 2 years ago... than it returned with a vengence, and persistence. That's when I heard about the O2, which I prompty acquired.

That was 2 years ago... and now I'm about 2 weeks into either a mild episode (in terms of pain level) or a long ramping up period to a huge episode... hoping it's the former.
I also have a broken toe at the moment (unrelated to the headaches!)... which is nothing compared to the head-bangers!

In any event, I'm real glad I found this site... I expect to be doing a lot of reading/learning here, and hopefully be of some help somehow.

Amyone else here from the Seattle'ish area?

Welcome! Do let us know your needs/questions. Hope you have located a good headache doc--if searching:

 
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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LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box.  Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
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See button, left: "where we live"

Welcome Bob...


Lets hope it's a mild one this time around.. ;) Great to hear you have acquired some oxygen it will become your best friend during cycle.



Lefty...!

Lefty wrote on Feb 7^th, 2010 at 2:40pm:

Welcome Bob... Lets hope it's a mild one this time around.. ;) Great to hear you have acquired some oxygen it will become your best friend during cycle. Lefty...!

Well, as expected, I had the opportunity to use the Oxygen last night... used 8LPM for around 15 mins or so and it pretty much nipped the attack in the bud. Woke up again 3 hours later with the next one, and didn't want to overdo the O2 so I just used my usual hot compress... that took much longer (45 mins or so) to quiet down.

Bob in Las Vegas wrote on Feb 7^th, 2010 at 4:19pm:

Lefty wrote on Feb 7th, 2010 at 2:40pm: Welcome Bob... Lets hope it's a mild one this time around.. ;) Great to hear you have acquired some oxygen it will become your best friend during cycle. Lefty...! Well, as expected, I had the opportunity to use the Oxygen last night... used 8LPM for around 15 mins or so and it pretty much nipped the attack in the bud. Woke up again 3 hours later with the next one, and didn't want to overdo the O2 so I just used my usual hot compress... that took much longer (45 mins or so) to quiet down.

If you have 02, use it!!!  and it is commonly required to use between 15lpm and 25lpm.  Make sure you have a non-rebreather mask for best results.  If you have questions about 02 read up on everything you may want to know and more from the 02 threads on this board found under the medications, treatments, etc heading. 

LasVegas wrote on Feb 7^th, 2010 at 5:23pm:

Bob in Las Vegas wrote on Feb 7th, 2010 at 4:19pm: Lefty wrote on Feb 7th, 2010 at 2:40pm: Welcome Bob... Lets hope it's a mild one this time around.. ;) Great to hear you have acquired some oxygen it will become your best friend during cycle. Lefty...! Well, as expected, I had the opportunity to use the Oxygen last night... used 8LPM for around 15 mins or so and it pretty much nipped the attack in the bud. Woke up again 3 hours later with the next one, and didn't want to overdo the O2 so I just used my usual hot compress... that took much longer (45 mins or so) to quiet down. If you have 02, use it!!!  and it is commonly required to use between 15lpm and 25lpm.  Make sure you have a non-rebreather mask for best results.  If you have questions about 02 read up on everything you may want to know and more from the 02 threads on this board found under the medications, treatments, etc heading.

Yes, after the last bout (almost 2 years ago) I did get an appointment at the University of WA Headache Clinic, where they basicly said "yep... sounds like cluster headaches... here's a prescription for some O2". I have been renting one of those huge green iron tanks ever since... fortunately it's only something like $24 every three months for the rental. It does have the mask with the bag under it, and the regulator does go up to 15 LPM max, allthough the prescription states to use 6-8LPM for 5-10 minutes. From what I'm reading here I should bump it up somewhat. Will see how it goes tonight.

If you haven't read "oxygen info", I've posted it below. It has valuable info about modern O2 use for CH.

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

The only way you can "overdo" oxygen is if you're on it for like 20 hours straight at 100% concentration. Even then, only a few will start to exhibit signs of lung damage.