My name is Geneva I'm 26 and i was diagnosed with cluster headaches last spring after a trip to the E.R. shortly after experiencing them they were already gone. i thought it was strange but was just relieved to have them gone, until now. Today I've had 3 already, which is the most in one day that I've ever had and the day is only half way threw. :( Due to the fact that i haven't had these in almost a year I'm not currently on any medication and what i had in my medicine cabinet isn't working. Due to the complete exhaustion I'm already feeling and fear that there will be more before the day is up I'm  thinking ill prob. be at the hospital shortly. any advice on what kind of treatment i should seek at the E.R. and how do you guys prepare your self for multiple episodes and possibly multiple day periods? which I'm fearing from the reading that I've been doing that this is going to continue on longer then a day :( thanks for any help or advice you can give.

Welcome to the board. I've had episodic CH for about 34 years, it's manageable, it just requires you never let your guard down. Treatment for CH generally falls into 3 categories.

1: a prevent medication. A med you take daily while on cycle to reduce the intensity anmd frequency of your attacks. Verapamil is the most common first line prevent because of it's excellent track record. Lithoum and Topomax are used by many as a prevent.

2: A transitional medication. Most of the pevent meds take 10-14 days to really become effective. Many have found that a short burst of prednisone done in a taper, starting at say 80 mg a day and tapering down to zero over a 2 week period, will give them a break from the attacks while the prevent builds up in your system.

3: An abortive therapy. Breathing pure oxygen should be your first line abortive. I kill my attacks in about 6-8 minutes just by huffing 02. It's important to get a home set up as one of the critical components to making oxygen work is geting on it as fast as you can. By the time you drive to the hospital it's generally too entrenched for the oxygen to kill it. Imitrex njectables and nasal sprays are effective abortives but are expensive. The pill form of imitrex is genrally too slow acting to help CH patients.

All of the above require a headache specialist neuro who knows CH. Those can be hard to find, but CH tends to be a lifetime event so the sooner you get hooked up with one the better.

For now, get to the store and buy a four pack of Red Bull, Monster, any energy drink contaiing the combo of caffiene and taurine. Chugged at the first sign of an attack many can reduce or abort a hit entirely.

If you do hit the ER tonight, try and get put on a prednisonme taper. It will most likely give you a break from the attacks until you can get into a neuro. It won't help with a current attack, but will prevent the next one.

Good luck.

Joe

First, don't to go the ER. Our messages are full of stories about the grossly inadequate treatment which is the norm. (Problem is that ER docs are trained to treat the most commonly disorders which are expected. Headache isn't considered an emergency problem.)

Second, if at all possible, get lined up with a headache specialist. Others docs may have acquired some skill/knowledge, but don't assume without closing questioning. Even neurologists receiving little education/trainng in headache.
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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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If you must use a non-specialist, ask him if he will accept medical literature which we can supply on Cluster treatment.

Print the PDF file, below; one for you and one to the doc. These are the commonly used meds for Cluster.

Print out this article, full length, for you education.




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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Explore the buttons, left, starting with the OUCH site as well as reading these messages.

Self-education is critical for your long term well being, second only to developing patience, in coping with Cluster.

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I completely agree.. only a neurologist will really know. I saw probably 5 doctors before I was diagnosed and put on medicine to truly help the problem. I was given all type of narcotics by drs who had no clue how to treat CH.

Hello & Welcome to Clusterville

  Do you remember how long your cycle lasted last year?  CH can sometimes be predictable (to some degree), in that this cycle might run roughly the same course.  Some have a few weeks or months every year . . . or two years . . . or skip five, then back at the "scheduled" time of the year . . .  so you always need to have your plan of action ready to go at the first sign of a new cycle.

  ABSOLUTELY get a script for 02.  Is a miracle abortive for most of us . . . and it's CHEAP if you have to pay cash (I pay $10 per "E" tank).  If used at the onset of an attack, you can kill the beast in minutes.

  Re the energy drinks . . . I like Rock Star orange (tastes like Orange Crush) . . . the 12 oz can is two servings, each with caffeine and 1000mg taurine . . . can make a difference by itself, and combined with 02 will usually run the beast off in minutes, before he gets to the "dance" stage.

  I'm chronic 11 years . . .  02 has been my only abortive for the last ten years.

  Happy to report that, due to the D3 regimen, have been painfree since mid-November. 

  Read, read, read . . . and ask any questions you might have.  You've found the motherlode of CH info/caring/sharing.

   Be Safe,   PFDANs

      Richard