Hello everyone, I am a cluster sufferer.  I have had this affliction going on over 10 yrs now.  My first was so severe I thought I was going to die.  I finally convinced my docter that it was cluster migraines after finding info on the web, and I fit every symptom of the cluster migraine to a "T".  He has not been much help other than giving my a prescrip. for Maxalt.  It works to rid the pain, at a very high cost, as my co-pay is very high for this med.   I generally go 1-2 yrs between cycles, and they last about 8 weeks. It has started recently, and I was looking to find more answers that might be out there in the last 2 yrs.( I have been headache free for the last 2 yrs.).  I found this place, so I decided to join and say "Hi".

Hi Craneman

There is much more available than just a Maxalt Melt to treat CHs.

First off you need a good preventive, like verapamil, lithium or topomax. This will, at the right dose, prevent many of your CHs happening. What will also help is a prednision taper whilst you build up your prevent.

Maxalt melt will work to abort CHs but it'll take about 20+ minutes to take effect, which isn't too quick with the pain of a CH.

What works a lot quicker is oxygen. Read about it on the left and see why it's so popular here with people often able to kill a CH in under 10 minutes (6-8 is typical for me).

Imitrex injections are also quick and effective. Read the tip on the left too for making them last longer.

Red Bull or similar energy drink (look for the taurine / caffeine combination) when drank at the start of a CH can drop the duration / intensity of the CH for many.

For night time hits, a lot of people are having sucess with melatonin.

Keep reading, there is so much info here to learn from and ask away with questions.

Start learning about how to help yourself!
PDF file, below; then the large article (print out); then find a HEADACHE doc; and start exploring the buttons, left.
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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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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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There are good treatments available. Tapping into the resources is the first, essential step.

Read and then ask questions....

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Welcome to the board! Oxygen, oxygen, oxygen! Read the oxygen info tab on the left. Imagine feeling the start of one of those &^%&%& attacks, and being pan free 10 minutes later. It works that well!

Hope you catch a short cycle this go round.

Joe

There is something new under the sun and it's called ClusterBusters. Check out START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.