I started getting headaches about 3 years-ago.  They were in the 1 to 2 range with the occasional 3 to 4.  I eventually became okay with those levels, but if the pain went to a 5, it never stopped.  Usually within an hour or so of hitting a 5 it would explode into a 10.  At first the 10-level would last 8 to 10 hours and then begin to slowly fade over the next 10 to 12 hours back into the 1 to 3 range ... never zero.  When people asked "how you feelin'?" ... what do you say?  At first 1 to 2 wasn't good and I'd say so.  Now it's normal.  then 2 to 3 became "normal" so "I'm OK", under those conditions.  Time between my explosive cycles at first were about 4 to 5 weeks, like clockwork and always on the right side.

After seeing a neurologist and "experimenting" with medication, I was able to get the period between my explosive episodes down to two months and then three months.  However, when they came, the explosive 10-level began to last 12-24 hours and the declination period down to under 5 took as long as another 36 hours.

Then I went through my longest low-level pain since I began having them ... 5 months!  I though I had them under control and then at the end of May I was under siege ... 24 hours straight of level 9-10 followed by 48 hours of oscillating pain back down to 2-3.  Went through 4 weeks of "good times" and then BAM!  Mid-June and another 24 hour massive attack followed by another 48 hours of declination, but instead of settling in at 1 to 3 it's 3 to 4.

It's because of this latest episode I decided to look on the Internet for others in the same boat.  How could this have gotten worse?  The doctor uped my medication between the last episode and this one twice, and it didn't work!  I'm convinced now that the medication that the doctor prescribed never really worked, it just seemed to me that it did.  Waiting on his next phone call.

I got used to a 1, then a 2, then a 3 ... not sure if I can get used to a constant 4.

Don't really sound like clusters .

          Potter

G'day  Rod. Top left of your screen is a button for our Cluster Quiz. Give that a try, let us know the result, and we'll help you any way we can.

All headaches are horrible.

I searched for Cluster Headaches because my neurologist told me that is what I had.  I'll quiz him more next time.  I'm still waiting to hear back from him concerning this last episode

As for the quiz.  In questions 1-8 ... I only answered yes to one, which was if my headaches lasted for more than 4 hours.  In the set 9-16 I answer yes to only 3.

From what I've read it seems that my high intense pain seems to last a lot longer and I don't seem to have the "up and downs" during the day like what I've read from others.  Is this what you are saying that I might not have cluster headaches?

Hi Rodney and welcome,
What medications have you been experimenting with?
Have you tried oxygen or Imitrex auto injectors as an
abortive?

Cheers, Hoppy

I'd never say that you do or don't have cluster headaches, Rod. Few of us here would ever do that, but you're certainly right in discussing it further with your doctor.

Do you happen to know if he's a headache specialist? Few doctors are and many sufferers go for ages with an incorrect diagnosis taking medications that are useless while another condition is going untreated.

Knowledge is your greatest weapon so keep looking, keep learning, and we're ever happy to help.

Brian wrote,Do you happen to know if he's a headache specialist? Few doctors are and many sufferers go for ages with an incorrect diagnosis taking medications that are useless while another condition is going untreated.

This is true, so that's why it's important to seek out a Headache Specialist, as their are many headache types, that mimic cluster headaches.

Cheers, Hoppy

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.
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Link to: cluster-LIKE headache:

IN: "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"