Hi Everyone,

I'm a 24 year old female sufferer of cluster headaches. It brought tears to my eyes when I saw this website. I've never met anyone else that suffers from CH. I live alone and nobody seems to understand what I go through.

Almost a year ago, my cluster headaches started. I was sitting on my parents' couch when my face suddenly froze. I was unable to move for a split second before the most agonizing pain I could ever imagine started happening. It started in my cheek and it just hit my head like lightening bolts. I was in so much pain I couldn't move.

After two days of this pain I finally went to the ER. The doctor just gave me antibiotics and told me he had no idea what was going on. He did refer me to a neurologist though. It took a solid two months before I could see the neurologist. I thought I was dying. I wished for death. I hated waking up every morning knowing the pain I was going to be in. I survived off of taking pain killers but they still did little to combat the severe amount of pain I was in.

After the worst two months of my life, I was able to see my neurologist. He quickly diagnosed me with cluster headaches after a series of tests. I had never been more happy to be diagnosed with something. At least I had a name for what was happening to me.

I've been treated with a variety of medication but so far I haven't had much success on treating it but it has been reduced enough that I can sorta live a normal life.

Well that's my story. I'm just so happy to find a place to talk to someone that knows what I go through.

It's nice to meet all of you!

Hi rosesandfrogs. Interesting name  :) Welcome to the site. Sorry you had a reason to come looking. You have a lot of reading to do. Check under all the buttons on the left side of your screen. You may learn more about clusters than your doctor knows.
Please tell us more....what meds have you tried? What about oxygen, ice or heat packs, energy drinks, the vitamin D3 treatment.
You'll get a lot of support here and make some great friends.
Please, if you can, stay away from narcotic pain killers. They will do more harm than good.

Thanks for sharing your story. Yes, you're right we do understand and furthermore we care. It makes sense that you feel better being diagnosed. knowing what you are working with gives you a fighting chance.
Also, finding this site will enhance your knowledge and equip you with what is needed to deal with the condition both mentally and physically.
As Bob stated, using oxygen properly is a great means to abort attacks. welcome

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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As you are starting to work with the doc read and learn. Explore the buttons, left.


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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The most important issue is your doc. Most general neurologists have very limited education/training with complex headache disorders. Suggest you ask the doc directly, what is your experience/training with headache?

If you have any concerns and have the option, it's best to work with a specialist. You will be dealing with a life long disorder and deep skill/experience is so important.
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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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Above all, I urge you to resist the temptation to try and treat yourself, using the many suggestions you'll receive here. Both you and your doc are starting from page one and he needs to have his efforts not affected/altered by treatments which you use independently. If, for example, you are using 2 or 3 different approaches to stop an attack, and you get relief, you won't know which approach is working.

What you should expect from the doc is a 3 step treatment plan:

1. A rapid acting med to stop an attack and,
2. Starting at the same time, a long acting med which prevents/reduces attacks. These take several days to become effective and #1 will be dropped in a few days.
3. Finally, an abortive med which will stop attacks which may sneak thru even when #2 is working.

Print the PDF file, below. It lists the most commonly used meds for Cluster. Good tool to use discuss options with the doc.

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