I'm about a month into my long cycle. 8 attacks yesterday with 2 tens are getting to me. My poor wife. I try to hide it from her, but can't all the time. But I'm trying to be proactive and do something. The VA is finally sending Oxy today. Wouldn't do more then 10 lpm. 25 is what I asked for. Mr Neuro said he doesn't do more then 10-15 lpm. He wrote script for that. So VA is sending the 10. They're also sending the basic mask, and wont allow the on demand valve. Will this even help me? Can it be modified to produce more?

Verapamil no good, and maxalt doesn't show me any love.

Started D3 regimen 3 days ago, but having trouble finding the complete regimen in a single post. No baseline test done.
Mick

Because this is your first message we have no background about such critical issues as: Who diagsosed you?; does this doc have experience in complex headache disorders? (many docs, even neurologists, have little education/experience with Cluster); were other disorders considered (many problems mimic Cluster but are not headache disorders).

That you have not had results with a couple of the main line meds, it makes these questions the more importnat.

Sounds like you hare making some decisions on treatment before these questions have been settled. IF this is so, it's not a sound approach .

Bob  I was misdiagnosed. They are clueleass. Pulled teeth. Micro decompression surgery for Trigeminal Neuralgia in 2011. Headaches never went away after surgery. VA Neurosurgeon was clueless. The next VA Neuro guy wanted to know what else was going on in my head. Dufus. Nov 2013 Dad buys us cruise tickets to S America. cool deal. But worst time of year for me. We cruise by Cuba, and it was like a switch turned off. No headaches or shadowing. Felt like new man. So last December another Neuro guy went through it all and diagnosed me with a Sub group under the TAC's the cluster headache group. My clusters run in cycles usually 6-8 weeks fall, and spring, cold weather. Right side of face, extreme eye pain, ear, jaw. The attacks last 30-45 min. New Dr scribed Sumitriptan seemed to help once or twice, but more hit and miss. No luxury of going to a someone who truly understands it all. End of my story.

So O2 arrived. They drive 2 hours and forget the mask. Only have the nostril piece at the moment. The guy did leave me with the 10 to 15 lpm regulater. I may have to try just sucking thru the tube until mask arrives.

Thanks for your quick reply. Sort of confirms what I was afraid of: poorly trained docs not able to diagnose you accuratelyl. (Neurologists, as a gorup, have meager training in complex headache disorders, contrary to what we expect from them. Pain clinics sare worse yet.)
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It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location. (This will add your location, just below your name, every time you post a message.
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If at all possible!!
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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Print the PDF file, below. Just for your info at this statge. These are some of the meds which you should expect to hear about from a good cluster doc.
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You will get a run of messages suggesting various treatments. Resist the temptation to self-diagnose and self-treat until you get a solid diagnoses. Too many folks have tried to diagnose/treat themselves, wasting years, until they found good, solid medical care.

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