Hello. I just signed up here tonight. Impatiently waiting for my headche to clear out completely. Seems to want to hang on and not let me get any sleep even though it has died way down. Just introducing myself. I've never really done message boards before, but this one is right up my alley. I'm Aaron by the way.

Hello. Well, I've been getting them for about 10 years now. I though a brain tumor the first few time I got them or maybe just had really high blood pressure. I went The eye doctor because the pain was in my eye. He told me it was my sinuses so I went to a regular dr and he said since it's in your eye, you should see an eye dr.  At that point I just started finding my own way to try and get some relief.  Extremely hot baths, giving myself brain freeze( which actually worked for me) etc.  Finally while at my 6 month physical my doctor asks me if I had any issues, I explained it to her and she told me what I described was a text book ch. she printed out some info and told me to keep my eating and sleeping habits the same. No alcohol or tobacco. I laughed and told her I guess I'm perfect for this condition because everything you told me not to do, is exactly what I do. She wrote me a prescription for some acetaminophen/brutal/caffeine pills and told me to take them as soon as I feel one coming and that if I wait until it kicks in they won't work. So anyway I got my first break ever this year. Didn't have a ch for a month until last week. Now I get them everyday and night again and this time they came back with super powers. Nothing works on them. They last up to 3 hours and when they finally go I'm completely exhausted from the battle. Stayed up tonight because my high pain tolerance kicked back in and I refused to let it put me out early again for one night. Moral victory I guess, that sums it up I guess. Question, does anyone else get a horrible attitude when you get a ch or is it just me?

1. Please tell us where you live. This can effect the kind of medicl care you may have. An example is your doctor. It does not appear that she has skill in diadgnosing the type of headache you have.

2. Don't start using different treatments until you know what the problem is. You wil just waste time for there are monay treatments you could try, not knowing what you are trying to fix.

Thanks! Location is a big factor in finding good treatment.

There are many disorders which mimic Cluster but are not headache disorders. Getting a doc to do a good diagnosis is relly 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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or On-line screen to find a physician.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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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Pring the article, below, and give a copy to any doc you see. It's a good tool to guide discussions about which treatments to consider using.
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Don't work with the doc just because they are close to you. This is one time when a good spedialist is important to find, even if you must travel to find one. Once you get settled and under effective treatment, you won't be traveling aa frequently to see him--so it's important to get a good doc at the git-go.

Hey Aaron, Welcome.  I'm new to this site as well.  I don't have the knowledge that a lot of these guys have, but I've had Episodic CH for about 25 years.  I was finally diagnosed only a couple of weeks ago.  This cycle has been BY FAR the easiest I can remember because of the information, and support I've received from this site.  So, I guess the only thing I have to offer is this: Follow the advice you get here, these guys really know what they're talking about.  They've helped turn my nightly HELL into a mere annoyance. 

Hey sj904fighter and Aataylor48,
Try and get yourself some oxygen and breathe it in at 15 litres/minute or more.
But until you can get your hands on it, when you feel shadows coming on -onset of a full blown CH- you could hyperventilate like mad, i mean really go for it. breathe in and out fast and deep deep breaths, if you do this for some time, it is likely that you will feel the shadows disapear. The cleaner the air you breathe when hyperventilating, the better.
Stick around here, try read up about Batch's D3 regimen.
It helps 80% of people who take it. It has the potential to make your CH pain go away completely or reduce it greatly.
Ask all the questions you want here, there'll always be someone to answer you.

All the best