my name is Kelly.
i'm 27 years old
and I've been scared my whole life not knowing whats wrong with me.
I've suffered from headaches my whole life, and not just normal average i got a headache and need to sit for a min. i'm talking about spitting searing agonizing pain ranging from feelings of razors tearing through my whole brain to feelings that my brain is on fire. always there everyday of my life i cant think of a day i don't wake up and within Min's there it is again pain  all day long. i started writing a headache journal and documented my symptoms and attack patterns and triggers that caused the attack everything i could think of i wrote down. after rigorously going through the web looking for an answer i find an article about cluster headaches and suddenly everything made sense.
lumps in my neck (cluster lumps) that become more predominate when an attack occurs, pain mainly on one side of the head stretching from temple to neck, loss of vision in extreme attacks, sensitivity to light and taste and smell and sound, nausea, extreme irritability, how no medication I've tried has worked, all of it made sense.
but i'm still scared because I've been alone this whole time. I've never found a doctor who could tell me anything to help or even knew what was wrong with me. i lost faith in doctors when i was young and had an attack so bad that my whole body locked up as if i was having a seizure after being rushed to a hospital by my father the doctor says there's nothing they can do and to wait it out.
so i am thankful to find others who suffer as i do and can relate and give advice for someone struggling to just live life like normal.

kushbud wrote on Oct 27^th, 2012 at 5:11am:

I've been scared my whole life not knowing whats wrong with me. no medication I've tried has worked i'm still scared because I've been alone this whole time. I've never found a doctor who could tell me anything to help or even knew what was wrong with me. i lost faith in doctors when i was young

There are many variations or other possibilities, which may have other causes that emulate cluster symptoms.  Each may require different treatment.  A good reputable headache specialist will help sort out and identify what path you should take.  It can start with an MRI and then a conferred diagnosis. 

A diagnosis can help start you on the road to the right treatment.  Identifying an affliction can give a more direct approach to dealing with it, saving you unneeded false starts and maintain progress toward alleviating its impact.

Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help you.

                       CLUSTER HEADACHE HELP AND SUPPORT › GETTING TO KNOW YA › NEWBIES, HELP US...HELP YOU
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Most docs, even neurologists, lack much training and even less experience, dealing with complex headache disorders. It's simply essential to find a headache specialist, especially when you have a complex history. There are effective treatments but this is no a self-help project, by that, I mean, self-diagnosis and self-treatment.
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LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.


2. 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.

3.  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.

4. 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.

5. 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.

6. 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.

i live in atlantic iowa and next month i am going in for testing for disability for cluster headaches social phobia and schizophrenia

I hardly need say, your plate is full.

The professionals you will be dealing with are likely to know zip about Cluster and they will be inclined to write off the headche sypmtoms to the other issues which they are evaluating. GENTLY insist that they get some guidance from a doc who understands Cluster before they rush to conclusions.

(Writing from the perspective of 35-yrs in mental health.)

Be gentle with yourself.....