I've been suffering from cluster headaches for about a year and a half, usually about once per night.  I only recently learned what it was called, through the efforts of my girlfriend.  I've started experiencing them during the middle of the day, which led to her looking into my symptoms.

I'm just absolutely shocked at how my every complaint and symptom, down to my left nostril getting stopped up and my left eye leaking matched up with cluster headaches.  I have a few questions though, and I'm wondering if anyone has felt some of the things I have.

When I get the headaches during the night, I wake up disoriented and usually end up rolling around in agony on my bed, stuffing my face into my pillow and whatnot until I eventually go back to sleep.  Is that normal with them?

Also, ever since it's started, I always feel so exhausted during the day.  I'm literally just always tired.  There are  very rare days where I'll wake up and feel absolutely amazing though, like I was depressed and suddenly I'm not, would this perhaps have anything to do with the headaches?

Last question, I promise, do aspirin actually help?  Whenever I get one of the headaches, I'll usually take about 4 or 5 aspirin, although after reading a bit, I'm not sure if it actually helps.  I'm too afraid to not take them at this point though.

Anyway, I'm really just glad I at least know what my headaches are called.  I was thinking for a while that I had a brain tumor or something.

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Pain meds don't work for Cluster.

Essential that you get a good medical wok-up and diagnosis. There are numerous disorders which appear to be Cluster but which are not headache disorders. So, 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. 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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As the last sentence implies: self-diagnosis and self-treatment is not wise. We have formal studies which reveal that far too many folks take upwards of five years to get an accurate diagnosis (and, therefore, effective treatment) because they consult dos who lack education/training in complex headache disorders. Why we encourage getting a skilled doc.

PaperDJ, Sorry to hear about the pet monster attacking your head. As previously suggested, please stop with the aspirin overuse. Seriously! If it seems to help, it is probably just the chewing motion and exertion. Repetitive motions can help to divert attention for a bit. Try ice chips instead, it helps me sometimes when they aren't so bad.

Painkillers aren't really the best choice for regular use. They can help if the dose is high enough to knock you out, but they only help if you take them long before the attack and they only help some people. I don't really recommend them unless your Dr is ok with it and you have a plane flight you can't reschedule or something similar. Also try everything else first.
If I take it too late, the attack will hit and blow the painkillers out of the water. For some reason if the attack hits before I'm drooling, it just doesn't work at all. Maybe a heart rate or adrenaline issue, I don't know.

Good luck, Keep moving forward!