Hello my name is Lacey I am 26 and from Ohio. I have been suffering from cluster headaches for 5 years officially but I believe I had them 2 years before my official diagnosis and my doctor was misdiagnosing me. I have tried so many medications and nothing seems to work. Finally after 2 years of begging my PCP has admitted he cant help me and is referring me to a neurologist. I'm hoping there's something that can be done, I just want this madness to stop!!!

Hi Lacey,
There is plenty that can be done, and I really don't see why your doctor says he can't help.
Your neuro may send you for a scan to rule out other nasties. Misdiagnosis is common as there are many headache types that mimic CH, and they respond to different meds, so a firm diagnosis from a neuro is vital. Once you are absolutely diagnosed with CH, ask for imitrex auto injections and oxygen ( you MUST have 15 litres minimum per minute and a non re-breather mask for it to work ) as abortives, and verapamil as a preventative. They all work really well, and while you will always have CH, it can be controlled enough to make life bearable.
Let us know how you get on.
Maz.

Unfortunately, neurologists have a poor reputation around here. The paradox is that the group which we naturally turn to has very little education in medical school, etc. around complex headache disorders.

This applies to pain medicine docs/clinics.

If at all possible, look for a headache specialist.
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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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While working to find a good doc spend much time learning about Cluster. The more you know they more confident you will become, anxiety drops.
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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 the PDf file, below. Both informs you and it's a nice tool to dicuss options with any doc you see.
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Finally, at this stage it looks like you don't have a solid diagnosis. So, don't start treating yourself because this may a doc work-up/diagnosis. If you start with a good doc, give him a fair chance to do his job.

First step: a skilled doc!

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