Hello, I'm Jeff and I have suffered with episodic CH for about 20 years.  I spent a lot of years trying to figure out what they even were.  I had brain scans for tumors, wisdom teeth pulled, told it was my sinuses, and even was told by one boss that I was faking it.  It wasn't until I saw a young resident at a family medicine clinic that I got the answer.  Once she started describing to me what a CH was, it was like listening to me tell the story to so many before her.  Why no one else ever came to this diagnosis I do not know.

My hits usually start in late winter, about now, and may last for a couple of months, where I will get one CH a day almost every day, with some being worse than others, but lasting as long as 12 hours.  I wander if this is really a series of them strung together that just get blurred from one to another.

Anyway, I have been free for a couple of years now, that is until this year.  I have had the first little "shadows" of a CH a couple of times and I am concerned that they will rear their ugly head this year.  That is how I got here.  I am just looking to see if there is anything new out there that may help me.  I have heard of the oxygen therapy before, but have never had the opportunity to try it.  I now work at a business that has its own health facility, and oxygen!  It would be a perfect opportunity to give it a try if needed.  I have not talked to the staff down there about it yet, but I think I will have to do so soon.

I look forward to reading more info on the subject and will hopefully be able to contribute from time to time as well.

Thanks

O.K., Engineer! Time to start using your system thinking.

Your present treatmentof O2 only is inadequate. If you have the option, suggest you find a headache specialit for two main reasons: IF Clusters, you will be living with it until your 60s; cure not possible bu good treatment a hand. So, good to have a solid doc you can work with fos the long haul. Also useful to get a firm diagnosis since there are a numbe of disorders which mimic Cluster.
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LOCATING HEADACHE SPECIALIST

1. 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.

2.  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.

3. 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.

4. 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. 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.

5. 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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WHY A HEADACHE SPECIALIST IS RECOMMENDED


Headache. 2012 Jan;52(1):99-113.
Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden.
Rozen TD, Fishman RS.

THERE REMAINS A SIGNIFICANT DIAGNOSTIC DELAY FOR CLUSTER HEADACHE PATIENTS ON AVERAGE 5+ YEARS WITH ONLY 21% RECEIVING A CORRECT DIAGNOSIS AT TIME OF INITIAL PRESENTATION
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Assuming it's Cluster, the standard treatment program involves: a med to rapidly abort attacks while, 2. a long term preventive starts working, 3. an abortive to rapidly knock out attacks which slip thru. (See the PDF file, below.)

O2 is becoming a standard abortive  but not to be used as the only item for it's action is too short to be used by itself.

So, these are the elements which give you an interlocking structure to gain control.

Please, stay in touch.

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Hey Jeff, and welcome! I agree with Bob. As to your question about O2, read the link at left. You want a regulator that will give you a minimum of 15lpm but 25lpm is even better. Plus, you want a nonrebreather mask. The plan is to hit the O2 at the first sign of an attack. The longer you wait the harder it is to abort. I can abort in under 3 minutes, and that's with a cluster that would normally last 30-45 minutes. A huge difference. For the really stubborn ones, I chug a double Monster or some other similar energy drink, and then hit the O2. Hope this helps some. Good luck and God bless. lance