Hey everyone, this is my first post here and really a huge eye opener.

False Diagnosis
The first time i experiences what I know now is a cluster, I thought for sure it was a migraine. I was 19 years old and couldn't believe the pain I felt on one side of my head. The sensation for me is a burning up one nostril, typically this nostril becomes clogged pretty quickly and then intense jabbing on one side of my head, especially behind that eye. I am sure everyone here would think... oh yeah typical CH, but from the perspective on a 19 year old this is just a nasty headache.

After daily episodes I went to the hospital and was given an MRI and different drugs.. the conclusion was nothing is wrong. Oh that is great to hear when I know my head feels like its deep in a blender. After a month or so they just go away and my assumption is great, some weird virus or something and now I am free.

21 years later either in fall or spring they come back.. there have been a few years where they didn't and I only hoped I out grew them. Each year I have been trouble shooting a remedy for my "migraines".

I came to the conclusion at some point that these were allergies.. I mean everything points to that when they come during the allergy times of year. Flonase really did seem to help on some level, as well as the neti pot. I have gone with this theory for the last 5 years. Once again a miss-diagnosis. These CH headaches come on at almost the exact times every day and in the middle of the night. So far these have been my most effective aids.

- pain killers - these ease about 5% of the pain if taken early enough, but really only mask the pain.

- caffeine - somewhat effective in the right doses (but not at 3AM in the morning)

- Neti Pot - sometimes it seems to stop them from getting bad if used early enough

- VERY hot shower aiming the head right in the pained area. This often stops them for a short while.. unfortunately they often come back so I have to get in the shower like 5 times in the middle of the night.. (my wife thinks I am nuts)

So here I am, I am for the first time learning about what I clearly have.. Cluster Headaches.. I am excited to try some of the solutions here, especially the O2. Unfortunately I am currently without insurance and wondered if anyone knew how I could get my hands on a tank, etc.. I even read about magic mushrooms in one place and frequent sex in another, haha this seems ridiculous but when the pain is as bad as it is.. I will try ANYTHING!

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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Your story is all too common: long delays before finding out what's going on. The delay reflects, in large part, that this is a rare disorders and most docs have no training/experience in dealing with complex headache disorders, this includes neurologists.

Let's get to the money problelm. Call the social work dept in your hospital (the largest one is best if you have a choice). Ask them for infro about finding low cost/free treatment for care, asking directly for a headache specialist.

I'm assuming you have not had a good diagnosis from a skilled doc and you believe, from your study, that its Cluster. Issue is that there are numberous disorders which mimic Cluster but which are not headache disorders. Essential to know what you're dealilng with for many folks wander around, as you have, trying to find some relieif--so don't you to continue to continue on that trip.

If the hospital can't help, call a headche specialist and seek guidance. Worth a call.
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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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When you see this last sentence, you see why it's not wise to try self-diagnosis and self-treatment, especially in reality that some Cluster-Like disorders are quite serious.

Please don't give up hope of finding affordable care before a effort.

While you are searching, spend time learning about what is going on. Besides what you find here:


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 with extensive material. Explore the site map and then, patiently, the broad range of materials.