37 yr old Male. Cluster headaches x17yrs, not chronic, usually 2 to 3 episiodes per year. Medicated with short acting pain killers, and muscle relaxants mostly, some sedatives (fiorcet, soma, midrin) with little to no luck.

Started new cycle out of the blue after a 1 yr remittion, and by the grace of god found this great site.

I must admit that I am a Pharmacy Manager and am self medicating as we speak. (not good I know)

After reading some posts here I started a titration of prednisone 80mgx70x60 etc... and shockingly after the first dose that evening I was not symptematic. Things going great until yesterday I forgot to take my dose (30mg) and awoke as usual shaprly at 2am in pain. I know I should be adding Verapamil, and or Lithium but am so scared of the side effects (lathargy, Bradycardia) as my normal resting heartrate is never out of the 40's. I am considering supplimenting with Cafergot and was wondering if anyone had any stories of success/failure with this drug.

Sorry for the long winded post but to be honest after suffering with this desease for 16 years and seeing several Nuero's I take more comfort from people who have been through and living with the same affliction than any Neoro's opinion.

Thanks,
Troy

Obviously a decent prevent would be a good start, but you'd want to be monitored for the 2 you've already discussed, verapamil and lithium. I'm in law enforcement and have been using lithium as my prevent for many many years. I use 1200 mg a day, at that level it blocks 70% of my attacks. It makes you a little lethargic but nothing a cup or two of coffee won't kill.

I used cafergot for years to back up my oxygen. I'd pop a cafergot at the start of an attack and then fire off the oxygen. 02 kills it, cafergot prevents the come back attack that I'm prone to. On the advice of several on the board I've dumped the cafergot and use an energy drink, rock star, which I chug at the start of an attack when I start my oxygen. So far it's working as well as the cafergot. If you haven't tried energy drinks yet, the work awesome to abort or at least really reduce an attack. It needs to contain the combo of caffeine and taurine to be effective. I use diet rock star because the taste isn't too bad.

Oxygen....read the oxygen info link on the left. Used correctly it's an almost miraculous abort. I can abort an attack in less then 10 minutes using the oxygen. Definitely worth a try.

I tried Midrin, Firoinal, Vicodain, and a boat load more in the early 80's. Now it's lithium for the prevent, oxygen and rock star for the attacks. I keep imitrex around but almost 2 months into this cycle I haven't used it yet.

Welcome to the board, sounds like it's time for you to get a MUCH more organized approach to this. ;)

Joe

 
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]
==============

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

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)
================
Michigan Headache & Neurological Institute for another list of treatments and other articles:

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

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.  Call 1-800-643-5552; 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.


-----
Both med. lit. and our collective experience says that most neurologists don't have training and experience in dealing with complex headache disorders.

Hey Troy,

Glad you found this site - I can assure you I have found some extremely helpful info/advice here, that as you said, isn't usually found at your run of the mill neurologist's office.

As Guiseppi mentioned, the newer method of hi flow, non renbreather mask O2 use is wildly popular with those who have tried it (lots of us here).

For practically fail safe abortive drugs when the O2 isn't available, imitrex injections (or generic equivalent) remain my personal choice, with the imitrex tip found here: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE  being very critical for keeping cost/side effect risk much better under control.

Thank you for the great advice.

You know it comes as a mixed blessing working in the Pharmaceutical industry. So often the medications I use are  just the latest and greatest, and I have put complete faith in them without exploring other non medicinal alternatives.

Our stores do not sell O2 so I will check into finding a Doctor to write the script. Costco get ready for a run on "Rockstar".....