I have suffered from these headaches for 5 years. I am 44 years old and have had enough! Usually, I get them at night. My pet name for them is the "Midnight Express." Always the same: Shadow pain in left molar, then spreads behind left eye, left eye droops, left nostril runs...and the worst pain for 30-60 minutes, then BAM, it's done...mine occur more in the summer and winter...I have had some success with lavender and peppermint oil, as weird as it sounds. I haven't found a doctor that can treat these headaches. I had a doctor tell me "yeah, the trigeminal nerve can hurt sometimes!" and he gave me steroids, which did nothing. I heard that O2 works...any feedback?

Hi Rob
Have you had a definate diagnosis. This is vital because there are other headache types that are so similar to CH it makes it hard to diagnose, and typically takes about 5 years to get a correct diagnosis. All the headache types respond to different meds ,  so you really need to know for sure what you have. You should also have a scan to rule out other nasties.

That said, your symptoms are typical of CH.  02 is Brilliant as an abortive method but it MUST be used correctly to work. You need a flow rate of at least 15 litres per minute with a non re-breather mask. It wont work otherwise.
Ther are abortive drugs, the best by far is sumatriptan auto injections. Dont go for the sumatriptan tablets as they take far to long to start working.

There are also preventatives. Verapamil seems to be everyones fave. Also check out these boards for threads on the vitamin D3 regime by Batch.

Any doctor can treat this condition but the trouble is most of them don't know it exists because it's so rare.They also tend to protect their budget a little too well. You have to do the research for them and hand it over, and TELL them what you want to try. Ask to be referred to a neurologist with headache speciality.
Maz.

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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Cluster is a more complex disorder than most folks appreciate. And getting good treatment, which you will need for many years, is difficult because so few docs have education and experience treating it.

That being said, self-diagnosis and self-treatment is not wise because there are a number of disorders, some of which are serious, which mimic Cluster. So, at two levels, we need to find an sharp doc, first to diagnose and then to develop a treatment plan. Going just by what you read here is not a complete way to handle the problem.

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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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Learning about Cluster is essential both to get good treatment and as a major route to controlling your concern/anxiety.

These sites which are worth your attention: medical literature, films, plus the expected information
about CH.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Search under "cluster headache"
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
  Full of articles, blogs, book: written by one of the best headache docs in the Chicago area.
  Worth exploring. The latest book is in e-book edition, $10; comprehensive and worth buying for
  a careful read.
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
  A new site (ca. 2015) with extensive material. Explore the site map and then patiently
  the broad range of materials.
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Print out the PDF file, below. Serves two purposes: gives you an overview of some of the major treatments for Cluster and it will give you a tool to discuss options with any doc you see.

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