i'm pretty sure i've googled cluster headaches several times before, but this is the first time i've come across this website and really explored it. i'm so glad i did!

i'm a 25 year old female from nj.  i've been getting headaches since i was at least 14, probably even younger.  i am not officially diagnosed with cluster headaches. however, after reading what everyone else has been writing, i'm wondering if they are in fact what i've been experiencing, as i am all too familiar with the pain that's been described.  i'm no stranger to headaches in general, especially migraines, so i've never discussed these particularly horrifying ones with my doctor. i always just thought they were migraines gone haywire, or just some weird headache that i'm prone to since my mom has described the same intense pain behind her right eye, down to her teeth, jaw, and neck. however, with all the new knowledge i've gained, i will definitely be calling my dr first thing tuesday morning.

although it hasn't happened in a few years (knock on wood), i remember a few times where i've been in such pain that i've found myself pacing my room because i literally don't know what to do with myself, digging my nails into the side of my head to feel something other than that monster behind my eye (i'm surprised i don't have scars), and just all-out panicking--not only from the intense pain, but also from the terrifying fact that NOTHING helps it once it's past a certain level. (if the pain isn't so intense and i'm able to focus, i've been able to find temporary relief doing yoga (i suppose the increase of oxygen is key here) and very hot showers, with the water pouring over my eye or neck).

i've also noticed that these headaches usually occur around the change of seasons, specifically the beginning of spring and fall.  (although last year i did get one around the first day of summer). in retrospect, march has always been a bad headache time for me. (fridays are also bad headache times...i'd say a good 80% of all my headaches occur on fridays. it was so validating to read that relaxing/slowing down can actually cause headaches. who would've thunk?)

this year in particular i've had two occurrences of what i suspect to be cluster headaches--one in march, around the time of that lovely spring super moon, and one this weekend. (i know it's not quite fall yet, but i did go from 100+ degrees in florida to 60-80 degrees in nj. i wonder if the weather could also have something to do with it? was my body tricked into thinking fall is here?) 

im also wondering if it is possible for cluster headaches to start out as another headache? this weekend i think i woke up with a tension headache (i have tmj and grind my teeth pretty terribly at night).  i took advil--didn't work. took excedrin extra strength--didn't work.  then i started to feel the pain shift, and there was that stinging ache behind my eye. i thought, "oh boy, here we go!" even though i didn't think it was a migraine, i took maxalt since that is pretty much my last line of defense before desperation.  after what seemed like a long time, i was pain free. (i wasn't entirely expecting the maxalt to work, and didn't even know it's somewhat effective for these headaches until i came to this site). i've still been feeling a little twinge behind my eye now and then, but so far it hasn't come back full force.

the only thing that does not seem to fit with everyone else's experience is that i don't get intense attacks followed by periods of no pain, on and off for weeks/months.  my experience has always been constant pain (of varying degrees) for 1-3 days, followed by no pain for months or years.  in my reading of this site, i've seen it mentioned that there are many other types of headaches that can have symptoms similar to cluster headaches. can anyone describe or direct me to a place where i can read about these? in my travels across the internet i've only been able to find info about the major players...migraines, tension, etc. Of course, i'm going to describe all of the above to my dr, but i want to have as much information as possible going in.

I'd also just like to thank everyone for sharing their experiences.  For a good portion of my life, I've had to explain to people that I can't do this or that because of the debilitating pain I'm in.  After a while, people start to think you're a liar or a hypochondriac. (Or worse, a whiner!) Of course I wouldn't want anyone to have to go through this, but I know if people could feel even half the pain I've felt then they would understand just how serious it is.  It's great to have a place where there are people who really understand! I think you're all troopers.

(Please forgive me if anything is unclear. I'm usually pretty clumsy with my words when I have a lot to say, but I'm also still a little foggy from this weekend's battle!)

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Many of your symptoms could describe a number of conditions. You do not mention if you have a diagnosis from a good headache specialist. If you do not, then I would encourage you to pursue such a diagnosis soonest. Headaches are a complex medical condition and could mimic one another in symptoms while varying wildly in cause. Don't rely upon a GP or even a plain vanilla neuro. Even the neuros who do not specialize in either CHs or headaches in general will not necessarily be familiar with CHs in particular. Good luck and God bless. lance

If you want to study, broadly, suggest either of these books.

MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com.  It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")


HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.

There is no concern about Prednisone as long as you are using it for a couple of weeks with the dose step down every 2-3 days. It will rapidly abort Cluster while a long term preventive is starting to work.

Top. is not the first choice, in my judgment, and a number of folks, here, have complained about the side effects. If your specialist appt is more than 4-6 weeks away, suggest you print the following and discuss with the current doc.

If the appt is closer, try Melatonin, 9mg/day,(cheap OTC in your drugstore) until you see the specialist. It's quick acting though not as effective as the Verapamil--but will bridge you for a few weeks.
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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.