Hello clusterheads… from Vancouver Canada. I am new to the site but not new to the show. I have had attacks since 1972. I am episodic. Usually 2 bouts a year (some years more) and during peak 4 to 5 attacks a day, 45 to 90 minutes long (sometimes longer)I have experience  from early misdiagnosis by doctors who thought it was  tension/regular/migraine headaches to good suggestions like “lie down in a dark room and turn the radio off”)  to opiate painkiller prescriptions, to ergotamine/oxygen/Imitrex etc. Actually in the 90's I was one of many (around the world) volunteers for the Imitrex trials. This seems to work for the most part for me. So, I think, it is a serotonin issue for me (of course it could be an adrenaline/testosterone/dopamine  low or high level that tip the kip pain level to its highest notch and then back again) . Hated ergotamines as the rebounds were severe. Mapping out public washrooms in different cities, for silent scream attacks, Public and private humiliations and embarrassments, including getting caught with an attack at the height of a cluster peak in a park and the beast came a callin. Too fast. Down on hands and knees with the hot poker in my bloodshot eye with its dead eye- lid, and crawling using my "good" eye to try to find washroom safety. I was not familiar with this large park and couldn't find the F... washroom but I certainly gave some of the park folk a good show and tell. So I have many experiences and theories. Hope to share the good ones with you. I do have one question. A few years back on some web site, or a link maybe from this one or O.U.C.H. - I saw a wooden mask that a clusterhead had designed. Half the mask was a carved face and the other half was the twisted and knotty wood from which the carver was using. Does this mask image ring a bell with anyone? Best to you all from Vancouver and I will leave this for now. Bill from Vancouver.

Welcome to the board Bill. Ah the good old days when Fiorinal, Cafergot, Percocet etc. were all they had to offer CH'ers!  Are you working with a headache specialist neuro yet? We have seen the best results from doing so. There have been so many advances of late in the meds available to us and HOW we use some of the oilder meds, most GP's are clueless on  any of these. I'm epsiodic also, and currently use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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


As you've found, Imitrex injectables are very effective abortives. They work for me, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. .

Go to the medications section of this board and read the post "123 pain free days and I think I know why." It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s a long read, worth the time.

Have you tried the energy drink route yet?  Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board For aCH’er, knowledge is your best ally. We’ll help you all we can.

Joe

Sending an e-mail which is too long to post also.

This one is getting attention and a number of us have had excellent results:

Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.

Rozen TD.

Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

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Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
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Since this abstract was first posted Zyprexa has appeared in some lists of recommended meds for CH. [BJ]

Thanks for this info my new friends. I am interested in all the therapies including antipsychotic drugs because I believe in the correlation of the emotional pain that may become mapped to our brain as a result of the anxiety and physical pain that our cluster's bring us. I am also interested in the study of pain and how the pain system works within the structure of the brain. I am also interested in what they call phantom pain. Last year, I went on antidepressants for the first time after close to 40 years of cluster anxiety/fear/pain. I can experience a great deal of anger during remission as well as during bouts. For so many years of fighting off the beast through begging and anger, I now feel that even during remission I have a short fuse with any kind of anxiety/stress levels which produce those quick strikes of anger that are so reminiscent of the "screaming at the beast" which has been my defense mechanism "fight or flight" with cluster pain. So I will be checking out the other boards. Until next time.
Bill

Hi Bill,

What they said, plus a little elaboration:

Many of us who tried O2 back in the old days didn't have great success, as it was prescribed with low liter flow and rebreather mask or canula.

A game changer has been high flow 100% O2 which has legions of devout users here. So please do read that link that Gusiseppi supplied (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE)

Bill, it is my own experience (both professionally and personally) that CHs do not evoke a response from us of which we are not otherwise capable. In other words, my guess is the anger you feel is already present and the constant pain and anxiety of the attack merely bring it to the surface more quickly. There is a danger of giving yourself permission to "act out" as a result of life's misfortunes. I would recommend you not do that. It won't help you or those around you. The trials you are experiencing is even more reason to put a check on the more volatile emotions and their subsequent behaviors. Just a few thoughts. Blessings. lance

Hi Lance, thank you for your response and I agree with you  with what you say.  So I must have expressed myself poorly. My thinking has more to do, in general, with pain and suffering from both the emotional and physical perspective. We know we Clusterheads suffer an extraordinary amount of physical pain. The thrashing, the banging the head against the wall, punching the thighs and the many other acts of frustration and anger with the intensity of peak attacks. But we also beg for mercy with pleading and whimpering, as well as shouting and screaming at the Gods, which of course, are the emotional responses from anxiety/fear of the pain.  And it is this dynamic of the extremes that I wish to examine in further depth. The accumulative effect as it were. The anger element within my personality was not meant to characterize CHs at large. Nor is it a characteristic from which any positive attributes can be derived. I certainly did not mean to imply that an "acting out" should be permissible or excusable. In neuroscience there is a belief that outside dangers to our selves activate a "flight or fight" response as a defence mechanism (no I am not in neuroscience) so with an eye on those defense mechanisms, I try to look at my experiences, like the anger within me, the experience of 40 years with episodic Clusters and how I have evolved in these experiences for better or worse.  Simply a means to try to understand myself better and the nature of pain within my life. I did not mean to point a finger at the trauma of cluster pain as a justification for my own personal behavioural shortcomings. Alas, for those I'm afraid, I don't have enough fingers. My best to you, thanks Bill.

Hey Bill, good response, and be assured no criticism was intended. I do take you at your word, and I share your interest in the pain response mechanisms. You wrote:


Quote:

In neuroscience there is a belief that outside dangers to our selves activate a "flight or fight" response as a defence mechanism

Couple of things. First, I think what you're after is a conditioned response, or a neural habituation, caused by the repetitiion of stimuli and favored reaction to that stimuli. We often describe a pattern of behaviors as a conditioned response when we can predict the outcome of an applied stimulus. This is behind most training programs seeking to instill a counter conditioning response: all the way from fear of spiders to Navy Seal training. In other words, without a conscious attempt to overcome our "natual" reaction we will fall prey to our conditioned response every time.

Second, it is a mistake to assume only anger is the conditioned response to fear, anxiety or pain. Others include curling up into a ball like a possum, seeking to override the stimuli with the introduction of another, equally powerful stimulus like alcohol, drugs or sex. There are others.

Bottom line is, at least for me and this forum, we can either let the CHs define us by dictating our response; or we can choose to impose upon our instinctive responses a framework that is more helpful and healthy. So O2 and our favorite abortives at the first sign of a hit rather than striking out in pain or running for the nearest gun to end this.

Pain is a powerful motivator. It drives us to seek resolution. What we're after is a good resolution and not one that is less than helpful. You might want to look up various instances of counter programming, or counter conditioning, to gain more insight into your query. Blessings. lance

Hi Lance. HMMMN. O.K. I am not sure why you are going where you are going with this, but if it is for the benefit of people who are suffering with CH and the last thing they need to hear is a long term Clusterhead talk about is pain and anger...then I get it. And I do apologize. I have little to no interest in suggesting that anger is an appropriate response and so I am a bit bewildered by your statement... "So O2 and our favorite abortives at the first sign of a hit rather than striking out in pain or running for the nearest gun to end this". Followed shortly thereafter with..."What we're after is a good resolution and not one that is less than helpful". Leaves me to believe that after many years of suffering CH yourself, there may be a line in sand which you draw, and I respect that.

However, while imperative with CH to treat the pain first (ie Oxygen, Imitrx, or with the preventative... Verapamil , Lithium ect.) ... we are still at the stage of treating the symptoms of the disease. Great strides in the advancement of treating symptoms however, and I am sure we are all thankful for that!!! So yes, you are a lot closer to what I am thinking about when you talk about counter conditioned response when I discuss anger and my curiosity with this and the many other emotions/responses in dealing with pain. My next question is... What do you know about PTSD and do you think there is a relationship to cluster pain and symptoms of PTSD? Or...what is the relationship between depression (including Bi-polar) and cluster pain. Or... is there a thread between cluster pain, depression and PTSD? Best, Bill

Quote:

is there a thread between cluster pain, depression and PTSD?

Hey Bill. I think you "got" where I was going quite well. As to your question above, I guess I have a couple of responses, at least for this site. First, acknowledging that PTSD is a complex syndrome to treat (including its onset and primary causes) in a broad sense, that which relates to any trauma's aftermath, it does apply to us.

Second, given the above qualifier, there is a direct link between all pain (and cluster pain is among the worst) and both depression and PTSD. After a day of unremitting bouts with the beast, with little effective intervention, it's important to realize depression is a natural result.

How we deal with that depression (short or long term) is the question, and that was my point previously. It's always good to bring this topic up, and it is equally good to point out the best way to deal with the beast's aftermath, is to attack it firmly from the beginning. I think in this we have agreement.

Thanks for posting. We all need to work this out in our lives, and the pain we experience is a powerful motivator to do so constructively. Blessings. lance