Hi everyone!  I'm currently in the midst of a cluster period and decided to do some support group searches. 
     I started having attacks around three years ago.  Saw doctor after doctor, had test after test, all the while convinced I had a brain tumor because the doctors just shook their heads and sent me on my way.  I was offered admission to a pain clinic, had i don't know how many MRIs and CT's, was offered to have a pace maker surgically implanted in my skull, and been on close to a dozen medications; all with out ever receiving a diagnosis.
     About 6 months ago I moved to the mid-west after completing my undergrad.  Had a pain free period from about September to January.  In early February I started getting little attacks (5 or so on the scale from the site, that's incredibly accurate!).  Around Feb 25th I was finally hospitalized for my headache because I couldn't function for almost 2 days, hadn't eaten, was dry heaving constantly, and had rubbed my right eye and the right side of my face raw.  The ER doctor immediately gave me oxygen (though through the nose piece, which my current/new neurologist informed me isn't really helpful) and gave me a large IV does of benadryl to put me asleep so I could be taken home and finally get some rest.
     A week or so later I got a visit with a neurologist, he read my report and took down my symptoms and said, I think you have cluster headaches.  Of course I said, what the hell is a cluster headache?!  I have been in remission since early March, however in the last week I have missed two days of work and have been home ridden several days.  May has always been hell for me, before I even new what a cluster headache was, I knew that whatever I had it was always really bad in May!Saw my neurologist today, (on short notice, he's a great guy!), and he has prescribed Prednisone and Lithium (which I found odd because I work in a psychiatric research facility as a research assistant and I'm so used to seeing patients prescribed Lithium, but never off label for things like headaches…), so here's to hopefully seeing some improvement!

Also thought this might be interesting to some, I have never in the last three years had an attack start in the middle of the night and wake me up.  I frequently have attacks that start at 11:00pm and can last until 2 or even later and keep me from sleeping, but never that have started after I have fallen asleep.

btw, wonderful site! If anyone viewing this lives in the south-eastern Ohio, Cincinnati area and knows of any local headache/pain support group resources I'd love to know!  Really if anyone knows of some "local" support group resources I'd be much appreciative! ~~~ Mitch

Mitch, the story in the 1st para is all too common here. But glad you are satisfied with your neuro for docs with good working knowledge of Cluster are also not common.

If your doc is experienced with Cluster then he may have a reason for starting you on Lithium but this is not generallly the first preventive med to use. It's less effective than Verapamil and has more side effect potential (although not a major issue if monitored properly).

Suspect he knows this aricle (PDF file, below) but you might print a copy for him and use to discuss opions.
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(widely used here and regarded as first response preventive.)

Headache. 2004 Nov;44(10):1013-8.   


Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.


    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).

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SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented.

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Glad you found us. Expect you have started to explore the resources, left buttons, and we can introduce other materials as you ask questions.

Look over:


A couple of sites which are worth your attention: medical literature, films, plus the expected information
about CH.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Search under "cluster headache"
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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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I second what Bob said. Also, you do not mention abortives other than a time with a nasal canula in the ER. Do you have any? And what sort are they? The prednisone I get, but lithium is a long term preventative and you are episodic. Is the plan for you to come off lithium when the cycle ends? It just seems to me to be a somewhat incomplete treatment plan, although it's really great your doc has some familiarity with CHs. That's a boost right there! blessings. lance

@Bob, WOW! thanks for the literature!  I have been on verapamil in the past, though admittedly not long enough it seems to have been able to see any kind of benifit, I think the doctor at the time may have been expecting instant results.  Perhaps the new doctor saw it in my history and decided to go straight to lithium assuming the verapamil wasn't effective.

@ Lance, I have heard no mention of abortives yet from my doctor.  While perusing the site I found a thread on energy drinks.  I've always had a few in the fridge just in case of a headache!  So strange to see the site see that others have had the same success with them as I have; although, they really only tend to take the edge off, or at best shorten the duration...  Enough to notice a difference though!
Thanks friends! ~Mitch

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Cluster Headache Help and Support › Getting to Know Ya › Newbies, Help us...help you

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If the doc hasn't talked abortives it raises the question about his knowledge/skill in treating Cluster. If there is any question and you have the option:

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.

You ever tried the self injection type of tryptans like immitrex? I use immigran over here and it will knock a cluster down in 5 or so minutes. Watch out for that prednisone taper, as the good times usually don't last for too long after the dosage drops below 30 mg a day.