Hello all! I'm a 33 year old mom of a 2 year old. One evening last week I started getting these sharp stabbing pains (like a lightning bolt under my scalp) on one spot on the upper left back/top of my head. It's not a constant pain, but can happen a couple/few "flashes" per minute or go a few minutes between. I got it to go away with some ibuprofen, but at 2:30 in the morning it came back hard. Took some more ibuprofen and finally got back to sleep an hour later. Same thing happened again the next evening, and middle of the night too. Followed by a couple of not as bad days, followed by a couple of much worse. One episode in the morning, another in the evening, and the middle of the night again. I finally got to the Dr. yesterday and she says these are cluster headaches. My dr recommended lots of water and caffiene and prescribed imitrex tabs, said I could keep using the ibuprofen as well. I've been reading up on the web and on here. Most seem to describe a more constant pain when these episodes hit. Does anyone else experience this on/off flashing of pain during an episode rather than constant pain? Thanks for reading and for any insight you may be able to share!

Hi Jodi, sorry you had to find us, but you've come to the right place.

An episode is the number of weeks/months this goes on for till you get a remission. Each individuall attack of pain can last anything from a couple of minutes to several hours. If, and I repeat if it is cluster headache then the ibuprofen was not responsible for your relief. Simply the individual attack stopped - till the next one. There is no pain killer, not even morphine, that will take away a CH. Remissions can last from a few weeks to several years if you are lucky.The word chronic is for those who have this awful thing all the time without remission.

There are many conditions which mimic CH so a definate diagnosis is vital before the right treatment can be found for you, and you should have a scan to rule out anything more sinister.

If it is CH, then immitrex is great but the tablets take too long to work. Auto injections are much better and will work in a few minutes.

Read all you can on these boards and you will find lots of useful advice. Check out the "oxygen info" yellow highlighted tab on the left of your screen. Look for posts about energy drinks, and hopefully some one with more computer smarts than me will come along and give you a link to the vitamin D regime which has had huge success for many people.

Come back with all your questions. You will always find someone ready to listen and share what they know.

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.
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Your doc is probably correct but her Rx response clearly says she lacks training/experience. Not that she isn't a good doc but most receive meager education in complex headache disorders.

Cluster is a complex disorder and many conditons can mimic it. IF at all possible, work with a headache specialist becasue, if Cluster, this will be a very long term coindition for you to manage. Can't cured--but, generally, can be well controlled--if you have the correct diagnosis and skilled hand guiding treatment.
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DON'T use pain meds! They don't work on Cluster and regular use will increase frequency and intensity  of attacks.
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First, need a confirming diagnosis;

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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Start reading here for basic learning; lots of deep experience to share. Explore the buttons, left of this page.

Print the PDF file, below. Introduces the most commonly used meds for Cluster and a good tool to use to discuss treatment options with any doc you see.
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Don't get into self-diagnosis and self-treatment until you have confirmed the diagnosis. Far too many cases of mis-diagnosis and, therefore, wrong treatment without skilled docs in your camp.

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