Hi Everyone,
I stumbled upon this website after having yet another CH.
A little bit about myself:
I was properly diagnosed with CH's last year after suffering for the last 8 years. I was on zomig when I was misdiagnosed with migraines at the start as I had no idea what a CH was. Obviously zomig had no effect and was grossly expensive.  I tried numerous preventitave treatements from feverfew to massage therepy with non really helping at all.
I am currently in the second week of my second cycle of the year (luckly I am not a chronic sufferer). The medication that I am on is 20mg of Relpax.  I take 1 at night to prevent the alarm clock CH and if needed take them at noon to help prevent against an afternoon attack. Unfortunatly today, most of my co-workers witnessed a full blown attack as I had run out of my meds.  It was pretty embarassing as I was literally weeping.  The meds do work, however I find that I am ripping though alot of these.
Anyway, I am glad I found this site and don't feel so alone as no one in my area knows what a CH is or how it feels. 
I can't wait for the day when they figure these things out and have some sort of standard treatment so that if my condition gets passed onto my son he doesn't have to suffer like I have!

Do you have oxygen? Read up on the oxygen info link on the left. Miraculous stuff.

While zomig never did me much good, as one of the triptans it is indicated for CHs and has worked for some here. You don't say what you were given beyond relpax. This too is a triptan and not generally prescribed as a preventative but rather as an abortive. Just curious. blessings. lance

Re. your last para: There are good treatments available and there are docs who know how to treat you.
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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. 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 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]

So... Oxygen?
Oxygen... Oxygen... Oxygen... Oxygen... Oxygen...
You get the idea.

So I went to the doctor today as I been ripping through Relpax prescription really fast and haven't been working.
After pulling out his giant blue book ( I almost laughed at this point ).  He put me on Maltrax.
I did bring up oxygen and surprisingly he wasn't really that receptive.  If the Maltrax doesn't work then I will get an O2 outfit on my own.
I was hoping to avoid that as I have a really good benefits.  He is retiring in May, and as much as I do like him, change might be a good thing.
I go back in 2 weeks to see him(sooner if Maltrax doesn't work). 
In the mean time I am going to start pricing out my out O2 set up.

Quote:


Lilwheal, I know you like your pcp but clearly he's out of his depth on this one. He'l treating you for migraines which is of very little use when treating clusters. I'm sure he means well and all that, but you're the one who will pay the price in pain and suffering. Get a specialist, or a referral if you need one. You'll be glad you did. blessings. lance

Always assume your cycle will never end. Keep pushing your doc for a treatment plan that addresses an effective prevent and a fast abortive. Worst case scenario the cycle ends and your armed to the teeth for the next cycle. With CH, there's ALWAYS a next cycle.

Joe