I just went to the ER last night because I thought I was dying. The doctors couldn't figure out what was wrong with me so I took to the internet. From there I found this site. I've got to say, I'm terrified and don't see much hope for the future with what I'm seeing on here. I have been getting these sudden headaches for a week now. Last night was the absolute worst pain I have ever felt. Like an ice cream headache x10 that wouldn't go away. It lasted about 3 hours. Is there any hope for people with this of beating it?

Hi and welcome

First off you need to work with a medical professional to get a confirmed diagnosis as this is a pretty complex area of medicine where even many neurologists have little skills or experience. So you are best working with a headache specialist.

Whilst not a diagnosis tool, try the CH quiz - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. It will give you an indication but you need to work with a doctor.

If it is CH then you've found the best possible place to get help and support from others with CH where we have the benefit of having experienced countless CH, neuro visits, medications and more.

With CH there is hope, there are effective medications that can limit how many CHs you get and ones that can kill off CHs when they develop. But getting the diagnosis is the first step.

If you let people know where you are located then we may be able to give some suggestions for headache specialists.

Do start reading all you can about headaches, knowledge is great for dealing with this.

And do start a headache diary, recording for each headache the times, date, pain location, severity, symptoms, duration, possible triggers and anything else you can think of. It can help with the diagnosis.

So sorry you're going through this! My husband started his cluster headaches in 2009 and luckily got them diagnosed pretty quickly because his doctor (in the US) referred him to a headache clinic.

Please follow all of Mike's advice. There is more help available for cluster headaches than it might seem...IF that is what you have. But you need to know for sure.

Best wishes...

If you decide to stick around, please:
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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Absolutely agree with the othe replies. It's a wee bit too soon to be hopeless since there are a few thousand of us who have lived good lives AFTER we got a good treatment program going.
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If at all possible:

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.