Hello all,

Well I have met the best for the first time of the year last week. They have been more mild than in the past, but I know that it will get worse as the time goes on. Typically I have had one attack from the beast a day, but this cycle I have had 2 one from around 11am-1pm and one minor one around 9pm or so.

Thankfully, my cycle lasts for about 2-3 months or so with about 3-4 attacks a day. Typically only one or 2 of them is the most intense, with the other 2 usually being somewhat mild. I can usually tell when the attacks are coming on, because I get the "warning pains" in my left eye. When the attacks are bad....they are bad...all of you know what I mean.

My doctor and I have been fighting this fight ever since I returned from Iraq in 2005. I am on Verapamil and Ergotamine Combo, and at the start they did the job, but as of late, it doesnt even phase these terrible headaches. I have found that nothing has had the effect on the beast that 100% oxygen has.

This season I waited too long to see my doctor and until today, I have been battling the best with no medication at all. Even with the meds now, the only thing that seems to help is a hot shower for atleast 30 minutes. I have been asking my insurance company TriCare for authorization to use oxygen at my home because it so quickly kills the beast.

In the meantime, is there any other home treatments that work for anyone else??

Thanks,

Im on 180mg verapamil

Ergotamine was the only thing going when, 35 yrs ago I first developed CH. Now, a doc who is depending on it as a first-line response is showing how dated his education is.

If you have the option, get with a specialist--not any doc, or neurologist--this is much too complex an area of medicine.
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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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Read the PDF file and the following article. It will give you an overall picture of current treatments and this material is good to use in discussing your options with any doc you see.
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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]
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After digesting these two pieces, explore the buttons (left) starting with the OUCH site and its many internal links.

This is an area where you may well end up knowing more than many docs do--so limited and poor is their education in headache--but it's a lesson many of us have learned--teach them to treat us.

I'm with Bob. I was given cafergot in the early 80's, it was the latest and greatest then, but we've come a long way!

It sounds like you have a good relationship with your doctor. Use the articles Bob has given you, as well as suggestions from members of this board, to educate your doctor. Then the two of you can kick some beast butt!

On Oxygen. It's really cheap. Get your doctor to write you a prescription for high flow oxygen, as needed for CH. A high flow regulator, at least 15 LPM preferably at least 25, can be grabbed off E-bay for as little as $25. E-Tanks rent for $4-5 a month and refills are about $15. I paid out of pocket for many years before we convinced my insurance to pick it up. Do take a minute and read the oxygen info tab on the left as it needs to be used correctly to get the maximum benefit.

Welcome to the board, hope we can help you find some pain free time soon.

Joe

I dont see 180 of verapamil being effective.

My dosage while in cycle is 720 mg