Hello everyone.  My name is Tony and I am in the sunny state of Florida.  I have been dealing with CH's for about 7 years now.  After a couple of different doctors I took upon myself to make an appointment with a neurologist who had dealt with CH before.  He scheduled me for an MRI and after determining that there was nothing else wrong he diagnosed the CH. They are chronic and they usually start about September or October and last about 2 - 2 1/2 months.  My alarm clock is usually around midnight when he wakes me. I have tried most abortive treatments such as the oxygen and imitrex and have still yet to find one that works for me. Ice did relieve it to some point up until this particular bout. Now it seems to aggrivate it. I will be trying the Redbull in the next couple of days. I have been taking topomax 20mg twice a day once a bout starts and in the past it did seem to cut down on my occurences substancially, like from ever night to twice a week.  When this bout started I started the topomax and I have been taking it for 3-4 weeks and it does not seem to be helping this time.  Has anybody had this happen and if so can I increase the mg's or is it time to try something else?  My ENT doctor suggested Propranolol, is it even worth trying?  I am glad to have found this site and hopefully someday the medical society will have answers to our wonderful CH.

I was going to try that.  How and where do you purchase the melatonin for that dosage?  Is it on the shelf or should I just go right to the pharmacist and ask him?

Prop. is an old migraine med about 30-yrs out of date for Cluster (for which is was not useful, in any case.)

Throwing a couple of lists of current CH therapies to give you a tool to use in discussing options with your doc.

Primarily, we encourage finding a headache specialist because of the complexity in dealing with complex headache disorders.....

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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or On-line screen to find a physician.

5. 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.

6. 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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See,


Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive
and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
 
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
============================================

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
ALL NEW!! HEADACHE 2008-2009
The new 72 page Headache 2008-2009 is hot off the press! Click here to download the PDF instantly! (free)

If you would like a bound copy, send $12 (includes shipping) to
Robbins Headache Clinic
60 Revere Dr, Suite 330
Northbrook, Ill.60062

OR call 847-480-9399 to use Visa or Mastercard.
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See the PDF file, below.
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Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or (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]

Hi Tony

Tony_C wrote on Oct 25^th, 2010 at 10:54am:

Have a read of the oxygen info on the left. Many who have found oxygen not to work have found it does when following these instructions. Hopefully you'll be able to use it.


Tony_C wrote on Oct 25^th, 2010 at 10:54am:


Always see your doctor before changing the dose you're taking of medication. There may be something in your medical history or other drugs you're currently taking that might impact what you can change.

Tony_C wrote on Oct 26^th, 2010 at 5:52pm:


You might consider staying at the same dosage for a couple nights and see what happens.  For me, it takes a few days to a week before it starts to reduce the number of nighttime hits I get. 

Unlike some other folks here, it's not 100 percent for me--but I'll take fewer hits, anytime.   

Best,

George

Hey Tony. I'm one of those who take 10-15mgs melatonin at night and it has helped a lot. Keep in mind a couple of things about melatonin, though. First, it requires B6 to metabolize so if yours doesn't come with that added ingredient you might want to include it in your daily vitamin regimen. Also, we've been warned against some bottles labeling as melatonin, when it's really not. Read the ingredients to make sure it is what it says it is. And try the O2 as suggested. Good luck and God bless! lance