My "pattern" seems to be fairly normal, and the frequency is pretty limited, but it seems like the last round of CH has been very erratic.

In the past, every two years (for the last 8) starting right as the seasons change in Oct/Nov I get the typical CH for 2-4 weeks.  Ihr at a time around the same time each day (one year it was 10am, one year it was 8pm).  After those 2-4wks, its gone for another two years.

This year, they started early in Sept, and havent happened every day.  When they do happen, its typically around 10pm, but its the same sort of headache/pain as any prior year.  For example, yesterday I got a respite and it didnt happen, but today it feels like its been brewing all day long as a way to get back at me for not happening last night.

So I guess the question is, can you "grow out" of CHs?  The other option is that now that I am so aware of triggers and prevention, maybe that is making it seem more erratic.

as a side note - In the past, Ive been to the doc, but never had any prescriptions.  I know for a fact spicy food and alcohol are triggers, and if i avoid those and keep up on several glasses of water a day, sometimes I can prevent that-days CH. 

I have hope that somehow this is going away, but I have a feeling that education is just lessening the symptoms...

One thing about this condition of ours is this.  It's never the same.  It keeps morphing.  What works one cycle, won't work the next.  It changes sides from right to left.  One cycle will be mild and short in duration while the next will not.   Don't worry about the whys of it.  It just is.

There is no cure for CH.  Can one grow out of it???  Some have "grown" in a remission of sorts and others, like Bob Kipple of the "KIP scale"  died in his seventies and was still getting hit.

What matters MOST is that you find a good and knowlegable doctor who will treat you properly with a good preventative and a good abortive, like oxygen.

To read that you have never used meds is surely an attention getter--a stoic!

With Linda on finding a headache specialist--not a general neurologist.

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LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. 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.

3.  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.

4. 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.

5. 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.

6. 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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This article may be informative.




Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
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And see the PDF file, below, for the latest evaluations of commonlly used meds for Cluster.

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Welcome to the board red, yeah, a headache specialist neuro, definitely your best bet. And you are correct, we can't cure it yet, but we go far beyond "lessening the symptoms", Oxygen will have me completely pain free in 6-8 minutes. A very common event on the board. Imagine feeling an attack starting, the pressure in the ear, the pulling on the neck, and 6 minutes later you are pain free. Read this link, it must be used correclty or it won't work:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

As far as cycles changing, for the first 20 or so years my cycles and attacks were like clockwork, 2 cycles a year, spring and fall, 2 attacks a day. Hit my mid 40's and they went all over the board. I've had cycles that went 8 months, remissions that went almost 2 years. Still hoping I'll outgrow them at 51! ;)

Joe

Redline wrote on Sep 7^th, 2011 at 5:19pm:

So I guess the question is, can you "grow out" of CHs?  The other option is that now that I am so aware of triggers and prevention, maybe that is making it seem more erratic.

I've had attacks very similar to your since 1999: same time of  year, almost always 2 attacks/day, and at almost always the same times (1:30 PM and about 2:00AM). By coincidence (ha!) they started up again after a couple years respite so I logged in today just for the heck of it. Wouldn't you know it's the anniversary of joining in 2009? :D

I think I had one other year around 2007 in which I didn't get the usual 4-6 week bout at the end of August, so maybe some people do outgrow them. I'm 50 BTW. I hope so!

Bob Johnson wrote on Sep 7^th, 2011 at 8:18pm:

To read that you have never used meds is surely an attention getter--a stoic!

Not unheard of though. I used Sansert about 25 or 30 years ago. Didn't work. I've never used any meds since. Just ice packs, pacing and deep breathing. And, cold winter air when available.

I can attest, almost 20 years and the cycles are more erratic than ever. Even changed sides last cycle. The thing morphs constantly....

I agree with Joe, till I was 50 like clock work every fall, then spring and sometimes summer. Three years was the longest remission, last cycle lasted the worst part of a year and it encompassed all seasons.

Oxygen was my only constant, positive abortive... throughout the last several cycles. Tried most of the common meds, with varying degrees of success, from none to stopping the cycle, only to find the next cycle the same meds that once worked, no longer did.

Finding an experienced Neurologist specializing in Headaches is a difficult task, but well worth it in the end. They are constantly working and learning from us and do visit this site for information. Knowledge and sharing this knowledge is our best bet.

All the best,

Baer

Hello All!

I was in remission for a little over 2 years and beastyboy finally paid me a visit two weeks ago. For the past 13 days, I have had pain every single night anytime between 11 pm and 1 am. This is the first time i tried oxygen with 90 favorable results. two times i did get a rebound headache after using oxygen. Hoping my cycle is near its end. Wishing everyone all the very best.

Great to hear of the O2 sucess... Keep at it and best of luck, "Illegitimi non carborundum"... ;)

All the best,

Baer

LOL, I think I skipped last year, but I've felt the signs for a couple weeks and one woke me up last night -- right on schedule (actuall a couple weeks late).