So yeah, I started my second spell of clusters about a week ago after a 2 year remission. My first spell lasted about a month or so and I got them the same time each night and luckily only one a day. My first bout was a breeze compared to the one I'm going through now as the pain this time is much more intense and I for the first time, just a few minutes ago, ended my second one in a 24 time period.

So, just wanted to tell a bit of my story. If anyone has a similar history, I'd love to hear.

Also, I've been wondering if it's common or uncommon for cluster spells to get worse and more frequent each time?

Anyways, this monster is a tough one to deal with and my heart goes out to those who have it worse than I. I really feel for you guys...

Peace,
Douglas

Hi Douglas, and welcome
You ask if any one has a similar history, answer - every one of us !!  Also, as for how common it is for CH to get worse or more frequent is a question with no easy answer. We are all different and our symptoms vary enormously. One persons experience will differ from others, and even from bout to bout. For you, this time is worse than last time, but next time may be easier - or maybe not. The only reliable thing about CH is it's unreliability, and the only thing we all have in common is the pain.That, and the desire to help in any way we can.

Have you been formally diagnosed as there are many different headache types. They are all similar which so often leads to a delay in getting a diagnosis. For me it was 5 years. But it is very important to get that diagnosis as all the different headache types respond to different meds.

Tell us a bit more about yourself - where do you live, what meds are you on, etc. All this will help us to help you.CH can be controlled once you know alll the ins and outs and as a relative newbie to the condition you may not have all the facts. Once we know more about you and your condition we can point you in the right direction.

You have come to the right place for support and info. The good folks on these boards have saved my sanity more than once. We can help, we can listen, and most of all we understand.
Maz

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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Not uncommon for new Cluster onset to be unstable in terms of frequency, level and location of pain, etc. May take seveal months before a stable patern develops.

Hope you are working with an experienced doc. Avoid general neurologists unless you can get a clearn picture of their traaining/experience.

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.
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Read and learn:

These sites which are worth your attention: medical literature, films, plus the expected information
about CH.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Search under "cluster headache"
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
  Full of articles, blogs, book: written by one of the best headache docs in the Chicago area.
  Worth exploring. The latest book is in e-book edition, $10; comprehensive and worth buying for
  a careful read.
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Assuming you are or will be seeing a good doc, do not start mixing the treatments he prescribes with the various treatments you will see/have sugested to you here. Mixing makes it impossible to know which treatment is effective.
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Patience during the early weeks is essential as the doc starts to find a treatment package which works for you. Always some period of adjusing doses, perrhaps, changing meds, etc. is common.

The general pattern involves starting with a med which gives instant block to attacks, with a longer acting preventive started at the same time, and a fast acting abortive for attacks whic sneak thru. You have excellent change of getting control IF you are working with a skilled doc.