Hello everyone, My name is Gary, and I have been a cluster patient for 40 years. I was 26 years old at the onset of my first encounter with a cycle in 1974. The physician I went to did not make a diagnosis other than to say that he suspected I was suffering  from ”tension headaches”. He eventually prescribed Prozac which I used for two days and then abandoned.  You may have guessed already…it gave me a headache. It was approximately 6 years later that I was properly diagnosed by a general physician in a family practice in another city. He did so because he was tenacious. He spent hours combing medical sources and eventually found clusters described in a book that fit my experiences. He was a younger man, and I was his first cluster headache diagnosis. He is one of my lifetime heroes. He subsequently prescribed sansert, a sub-lingual methysergide which seemed to work in the early part of cluster cycles. In another cycle he referred me to a neurologist that had taken an interest in headache.
Over the entire span of being a cluster sufferer I have generally experienced clusters twice per year, in Spring and Fall. These would usually last 4 - 6 weeks. I have had other, very different experiences however, including a period of "remission" for three years and a period where I was visited up to four times daily for 19 months. I am presently in the midst of one of those cycles that is outside my norm. It has lasted seven months so far, and features 3 or 4 attacks daily, although these have been easily suppressed with O2 (20 LPM and following the O2 protocols found on this web site). If I cannot access O2, a short snort of Sumatriptan nasal spray also seems to work. As such I have curtailed some of my business travel, though I have O2 available in two of the cities I visit most often.
I feel that I have been generally successful over the years in dealing with cluster headache.  During the last 40 years I have moved several times as career opportunities presented themselves. New locations, new jobs, new friends, new associates, and new physicians meant more strenuous efforts to find solutions and deal with lifestyle issues introduced by cluster headaches. I read similar stories here and elsewhere on the internet. I feel like our collective story as patients more closely resembles a form of guerilla warfare and bootstrap advocacy. Still, I was very fortunate. The greatest breakthrough in terms of my treatment came shortly after a move to Southern California in 1987.
It came as a coincidental introduction to Dr. Lee Kudrow, a neurologist and an early pioneer in cluster headache treatment and research practicing in Southern California and conducting research at  UCLA. After a conversation at that chance meeting I followed up his invitation to make an appointment. Dr. Kudrow, as far as I know, was the first to publish comments about O2 therapy for cluster headache in 1981. Notably Dr. Kudrow was himself a cluster headache sufferer. Under his care I began to be introduced to many of the therapies that today are bulwark protocols for cluster patients.  Dr. Kudrow prescribed O2 therapy which he stipulated at 8 – 10 LPM with a non-rebreather mask. Under Dr. Kudrow I also went through several medicines that most of you will be familiar with. These included verapamil, calcium channel blockers, beta blockers, ergotamines, lithium, and, of course, corticosteroids. None of these were effective at preventing attacks and my best recourse was to never be far away from Oxygen. I began carrying tanks in my car. I became quite bold if, during a meeting for example, I had to announce that I was having a “type of asthmatic event” and needed to excuse myself for 15 minutes to return to my car where I kept a “treatment system”. I always exerted a calm demeanor, and assured anyone present that I would be fine. I’ve excused myself from meals, meetings, card games, tennis games, golf courses, theaters, picnics, and once, in the midst of giving a presentation. I frequently had to travel and I learned to carry a letter from Dr. Kudrow to present to an emergency room explaining the O2 therapy and inviting verification calls day or night if required. Dr. Kudrow had been kind enough to provide his private numbers, reflecting his keen empathy as a fellow sufferer. Only once did an emergency room physician say that he felt he should call. It was in 1987 and the unusual thing was that I was in London at the time. When the doctor indicated he felt he should make the call to Dr. Kudrow. So I noted that it was quite early in the morning for Dr. Kudrow, but if he felt it was necessary then please be quick. Then I had a stroke of brilliance if I do say so myself. I said, “of course, Dr. Kudrow will write to the head of your Neurology department urging that your institution become familiar with the widely understood adoption of O2 therapy as a gold standard for cluster treatment”. It was a pure bluff on my part but in the midst of an attack I was anxious to get onto the huff. A few short minutes later I was plugged into the O2 source at 12 LPM and I did not hear anything more about calling Dr. Kudrow. As a later note of irony, it was Dr. Anna Cohen, of the Headache Group at Queen Square, London, and a part of Dr. Goadsby’s group, that performed a controlled study on 109 patients, treating with room air and Oxygen on a random basis. The study overwhelmingly supported the observations of Dr. Kudrow. Two other innovative treatments came from Dr. Kudrow. During my first visit he referred me to a bio-feedback practice that he had collaborated with on cluster cases before. It was there that I was first introduced to, and learned to practice, a form of autogenic feedback. It was there also that I learned how to focus on, and understand better, the signals of a headache approaching. This has been an issue that has frustrated cluster sufferers in particular. For the several years before learning about biofeedback I described my headaches as appearing suddenly, with no warning. I knew nothing about KIP scales but I knew that they started at lower levels of discomfort and ramped up quickly to full scale, acute unilateral pain, accompanied by rhinorrhea and lacrimation, also unilateral.  Biofeedback became a primary tool to deal with runaway cluster attacks that for whatever reason, I was unable to attenuate with O2 or Imitrex, etc. I won’t go into detail at this point but will be happy to answer any questions. For me it meant the end of severe acting out of my pain. I learned to remain calm and learned how to reduce the impact of the pain.  The regulated breathing of O2 is the perfect cadence for biofeedback.
Then in 1990 the clouds parted and a bit of a miracle occurred. I received a call from Dr. Kudrow’’s office asking questions about a refill I had requested. They wanted to know if I was in a cluster cycle which I affirmed. They suggested that I visit his office as he wanted to do a quick exam and suggest a new therapy. Long story short I and another patient of Dr. Kudrow’s were given the first subscriptions in the L.A. area for Imitrex. I recall that I had to drive from Ventura to Orange County to get to the pharmacy that was supposed to receive their first stocks in a day or two. Imitrex is only second to O2 in terms of efficacy to this day. I have never been tempted to try another form of Sumatriptan.
Eighteen years ago I left “honest” employment and started a consultancy in technology manufacturing. Then, sixteen years ago I pulled up stakes and relocated my company to Southeast Asia, following the wave of off-shore manufacturing.  In terms of career it was a great move. In terms of dealing with cluster headache it was a two edged sword. Physician knowledge, or adequate knowledge of the extreme pain of cluster, here is very limited. Headache of any kind is simply not accorded a place of importance. Meds are often not available (e.g. there is no nasal application or injection of sumatriptan available where I live. Only tablets are sold here and they are frequently out of stock.) I have literally found no neurologist that has specific experience with, or interest in, cluster headache. The other edge of the sword is that regulatory activity in Southeast Asia is not very stringent. It is easy to find a friendly pharmacist that will read any material you provide them and accept your explanations as to why you are asking for a particular med. In fact, they tend to be far more helpful than many of the doctors I have seen. Though I have never had a prescription here for prednisone, or Cafergot (which I sometimes use as a preventative) I can buy them at will. I was able to go directly to the supplier of O2 with no Rx required. I also buy Imigram tablets which I regard as only slightly better than nothing. With them, I never really know if they worked or was it simply the attack running out its course. I am able to keep a supply of injections for moments when O2 isn’t available by buyig off shore ad importing them as personal medicine. An injection of Imitrex stops my attacks within 6 – 10 minutes typically. I am able to consult a neurologist with a specialty in headache as needed by simply taking a 1 hour flight to another city. That cannot be a good answer for everyone, but I put my headaches on the highest priority. If I am in a cluster cycle, it is my first priority to reduce as much as possible the attacks.   
I would like to think that my experience is a hopeful one for sufferers encountering cluster for the first time. While cluster is a serious, and life disruptive condition, I have been very fortunate to find ways to deal with mine. Much of what I have learned has come from this site. For example, I could not understand why O2 was effective only some of the time during a particular cluster cycle. When I read here that recommended flow rates could be as high as 20 or more LPM it made O2 my “silver bullet” again. I had also reached a point where the Prednisone taper didn’t seem to help the frequency or rapid escalation of attacks. I was using a start point of 40mg. Reading here of tapers that started as high as 80mg I consulted my doctor. During the last the three clusters I have been able to regain this edge against the frequency and severity of attacks. This web site has been my best source for information about cluster owing to the extraordinarily generous people here. I cannot thank you enough. I also apologize for this very long entry, it seemed to grow on its own.

I'm 27 years old now . And having already been suffering from for about seven years... My attacks are growing closer together and just as u described the prednisone isn't working I just ended my third six day taper pack...I've taken three back to back to back..... Now after all three taper packs I've had four plus attacks both nights that I've gone without prednisone... I don't understand why.. It used to end my cluster period y does it stop working.... I got the vitamins... Today was my first day taking them crossing my fingers

[quote author=7C5F5D4A4C4C402F0 link=1360498143/1#1 date=1360504043]Wow!!! Reading your story I kept saying that was me, that was me again!!!

Joe, thank you. To arrive here the first time as a cluster patient or a care giver, is almost an event that occurs at the level of an epiphany. You can read this theme repeated time and again in the extensive archives when a new arrival posts remarks like "at last" or "thank God". The value to a clusterhead in just finding a like minded (no pun intended) group is a huge encoragement.
The vitamin regimen is of big interest to me and I already have an order for the supplements that should arrive shortly after the holidays here. Once started I'll post progress occasionally. Thanks again mate.

LasVegas wrote on Feb 11^th, 2013 at 12:44am:


Gregg, thank you. I'm have to cop a mea culpa and acknowledge that I frequently forget about using paragraphical breaks. The bad habit seems to creep into any lengthy post I make on a discussion board. I am better at it when I'm writing a report or an article.

As I understand it Dr. Lee Kudrow has been retired and the practice has been under the direction of his son David since the 90s. I knew both David and his sister Lisa when they were quite young, and their father's clinic was in Woodland Hills. (It is now in Santa Monica, CA) Both of them spent considerable time there working and before Lisa's acting career took off she had been planning to follow her brother and father into neurology. Lisa is a migraineur and I think I read David may be as well.
Thanks again for your note.