Greetings headbangers & hair pullers,

     My name is Scott Torres,  I have had CH's for nearly 2 years now and accompanied with Migraines for nearly 7 years.  My family and I own & operate a small used car lot, and Ch's have really put a dent in my progress at times.  My first attack occurred while I was visiting my mom, sitting on her patio at about 11PM. . . I was very calm and happy for the most part, not a hint of any recent big Migraines.  Then without warning almost as if something just exploded inside,  My first thought was what is happening to me? I went to my knees almost instantly from my chair.  I could not see anything I reached out for my moms hand, it was hard to talk.  Then I could not hear much and the pain seem keep getting worse. I tried to ask if I had been shot is there blood? I tried coffee and Percocet and Marijuana and breathing and pounding and crying and yelling. . .  my mom became scared, I am not sure exactly what went on during the approx. 40 minute episode, but my mom called for my brother to take me in, and that is a real joke trying to get treatment at a hospital for a, I think I said "really bad Migraine headache".  The next morning I was struct again right after I took a shower and it instantly got worse as soon as I tried coffee, this one lasted only 25 - 30 minutes but seemed as painful as the night before.  I have had a total of 9 attacks that I can classify as Clusters.  I joined here because I feel I am going to need advice/help this season, I think we all do when early in this.  I am glad you guys are hear, and as long as I can look at the computer screen I will be sure to visit here. Thank you -carlotscott

P.S. Has this website considered optional background & text colors, so each individual user can choose the colors that work for them when visiting your site? Just curious.

See a headache specialist and get diagnosed.

     Potter

I am new to this site not the disease, but thank you anyways.

I don't understand your reply #2. In any case, when you have two complex headche disorders management can become a bear. It's really most helpful to be working with a headache specialist.
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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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For some background learning:




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]

Bob's given you some great advice to get started with.  Read the following  link as a CH'ers first round of defense should be oxygen. I abort mine in 6-8 minutes just by huffing the 02, beats the old 90-120 minute head bangers I used to endure!


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

For laternative treatments check out:

Clusterbusters.com

And avoid the weed while on cycle! It's a vaso dialator.....which for a CH is like pouring gasoline on a fire. Most of what we use to abort attacks, oxygen, coffee, energy drinks, are all vaso contrictors. Also stay away from the pain killers. They simply won't work on CH pain, and the danger of addiction and rebound attacks is significant.

So glad you found the board, hope we can help ease the pain a bit.

Joe

You say the hit was worse after you had coffee? That, I think, is a bit unusual around here. Caffeine is one of the ingredients we seek out as a rule, now in the form of either really strong coffee, or an energy drink with both caffeine and taurine at play. I should think that would be a point of discussion with your neuro and headache specialist. Has anything you tried helped? You only list what has not worked, and in our experience, you are right: those things won't touch a CH. Still, there may be other things going on. Let us know more, please. And God bless. lance