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In this section:

- OK -
sorry you had to come here ....
because you've probably arrived here if you or someone close to you has a condition called Cluster Headache
and you are looking for information on how to cope with this scenario.
HERE ARE THE BASICS of what is known and New Research as of December 2004 / Spring 2005 (short FAQ)


FAQ
What are the Symptoms of CH? What should I Avoid as a CH patient? Where can i Meet Other CH'ers online?
What Causes Cluster Headaches? What can I do to Manage the Pain? Where can i read more medical info?
Why are my Attacks Regular in Timing? What about the MUSHROOMS? Michael, what's your CH history/type?
Finding The right doctor Is IMPORTANT. How to keep a CH pain-level chart to track if your meds are working


What are the symptoms of CH?

Once known as Ice pick, or suicide headaches, The pain usually begins in, around, or above the eye or the temple; occasionally the face, neck, jaw or ear may be affected. It is always on one side, and generally affects the same side in subsequent bouts. Many patients prefer to be upright and active when an attack is in progress. the pain is often excruciating in intensity, and is very deep, non-fluctuating, and explosive in quality; only occasionally does it pulsate or diminish.The pain of a cluster headache begins quickly, without warning, and reaches a peak within 2 to 15 minutes. 10 to 20 percent of patients report superimposed moments of stabbing, ice pick-like pains in the periorbital region that last for a few seconds and may occur once or several times in rapid succession; this stabbing pain usually heralds the end of an attack. When the attack is over the symptoms resolve in 1 to 2 minutes. Most CH attacks hover between 8 and 10 on the pain-scale shown below.(Ekbom, 1975).

Periodicity and Duration of the Attacks
Attacks last from 30 minutes to 2 hours (average of 45 minutes) in about 75 percent of cases. Occasionally, attacks - especially mild ones - may be as short as 10 minutes, whereas others may last as long as several hours. Attacks range from six in 24 hours, to one per week, with an average of one to two per day. Periodicity or Regular timing is a characteristic feature in about 85 percent of patients: attacks of pain tend to recur at the same hour each day for the duration of the cluster bout; many individuals also experience additional attacks that occur randomly throughout the day. Manzoni et al, (1983b) found sharp peaks for attack frequency between 1 and 2 a.m., 1 and 3 p.m., and at 9 p.m. - Patients are awakened from sleep by pain pain in about 50 percent of cases, usually within 2 hours of falling asleep.

A Cluster "Cycle" is the time period in which the regular headaches occur, this ranges from 2 weeks to 8 months or more in severe cases. The cycle will repeat itself like clockwork at a regular interval spaced as wide as every 3 years
Other Related Symptoms and Signs
Drooping eye-lid and tearing from the eye on the affected side is the most common associated symptom. A blocked nasal passage, red eye, pupil dilation, and sweating and pallor of the forehead and cheek are often found, but their absence does not exclude the diagnosis. There is a rapid increase in heart rate and blood-pressure at the onset of attacks and further rate variations become pronounced as the paroxysm proceeds, suggesting central autonomic regulatory instability. In general, a modest bradycardia occurs during an attack (Russell and Storstein, 1983).

What are the causes of Cluster Headache?

The cluster headache condition appears to be caused by an abnormality in the hypothalamus.
The Hypothalamus is the control center of all autonomic regulatory activities of the body.
It has been said that the hypothalamus is the brain of the brain. It is the hub for automatic and endocrine homeostatic systems such as cardiovascular, temperature, and abdominal visceral regulation. It manages all endocrine hormonal levels, pituitary gland regulation, blood pressure regulation, hunger and salt cravings, feeding reflexes, thirst, body temperature, hydration, heart rate, bladder function, water preservation, hormonal/neurotransmitter regulation, ovarian function, testicular function, mood & behavioral functions, wakefulness, metabolism, sleep cycles and energy levels.sensory processing, and organizing body metabolism, as well as ingestive behaviors. It appears that almost everything the Hypothalamus does is related in some way to the management of brain and body connection, linking the psyche (mind) to the body.

This abnormality is an extra-thick layer of cells. It is something CH sufferers are born with,
although Chiropractors will tell you it is caused by misalignment in the neck or spine. This was one theory, but it has been disproved long ago - so don't waste your money.

Your odd hypothalamus sends scrambled messages to your nervous system,
causing vascular constriction and other as-yet unknown effects which cause immense PAIN which is not treatable with any normal pain medicine.

CH headaches are not actually a 'headache' like a migraine or a caffeine withdrawal headache. It is more like a type of direct brain-dysfunction that is more painful and disabling that anyone can imagine.



Why are my headaches SO regular?

The cluster headache condition appears to be caused by an abnormality in the hypothalamus. This is the part of the brain which is called the 'biological clock' that is responsible for orchestrating and synchronizing the behaviors of all the organs and hormonal processes & changes that happen during our waking and sleeping cycles. Somehow it gets off-time and starts sending the wrong signals ... but it's timing mechanism is still 100% working so the headaches come at certain times of day or night.
This is also why the headaches will eventually go away 'on their own' after your cycle is over.
(from med literature)
The "biologic clock" is Serotonergically modulated and is connected anatomically to the eye. The drugs effective in the treatment of the cluster headache syndrome Enhance Serotonergic Neurotransmission, as also occurs in the treatment of migraine. This suggests that unstable serotonergic neurotransmission, may be common to both disorders. the evidence supports the tantalizing speculation that the cluster headache syndrome may be the result of an antidromically(out of cycle) discharging biologic pacemaker.

(my emphasis is on the last sentence because it relates explicitly to WHY 'magic' mushrooms totally CURE the CH attack and cycle in about 85% of those questioned so far .... again i quote:)
"The drugs effective in the treatment of the cluster headache syndrome
are those that ENHANCE serotonergic neurotransmission".

Mushrooms ARE a serotonergic neurotransmission hyper-super-booster
which works for about 5 hours, and apparently when the hypothalamus
settles back down from the mushroom-trip serotonin flood ...
it 'Reboots' or resets itself to it's NORMAL, non-Cluster-headache cycle routine


What Should I Avoid As a CH sufferer?

Everyone is different, and even though cluster cycles happen on a schedule - they can be induced in patients by giving nitroglycerine. This shows there are some chemical triggers ... some patients have reported gas and other emission fumes as a trigger, as well as solvents and ammonia.
During an active CH cycle many patients
find that alcohol is a sure headache trigger

... even a few sips of beer can trigger a painful bout ...
so spare yourself and don't drink at all till you know your cycle is over.
Sometimes moving or visiting a different climate, altitude, humidity zone, time-zone or latitude can set off adaptive reactions in the hypothalamus which lead to an isolated Episode or even start a CH 'cycle', but this is highly specific to the individual.
A number of other precipitating factors have been noted
in a smaller number of patients and include stress, relaxation, exposure to heat or cold, glare, hay fever attacks, and, occasionally, the ingestion of specific foods (chocolate, eggs, dairy products). There is some evidence that head trauma can precipitate the syndrome.


What can I do to manage the pain?
Sorry to report: Not much really .. in terms of just getting rid of it.
Standard opiates, anxiety meds, marijuana, barbiturates, heroin, cocaine and sleeping pills have little or no effect, except to sap the willpower you need to keep your sanity .. i'm sure you know what i mean.

There are a number of Medications prescribed to treat individual headaches, these medications are not too effective because of the rapidity of the cluster headache onset. Immitrex injections are both expensive and associated with very unpleasant side-effects. Other anti-eppeliptic and anti-psychotic medications have been found partially effective ... but if you are OK mentally, it's probably not a good idea to mess with the brain chemistry that intensely.

Unfortunately there is not a treatment for aborting, preventing or stopping a cycle,
*except the experimental psychedelic (Magic Mushroom or LSD) therapy soon to be studied at Harvard Medical School.

Vigorous physical exertion
at the earliest sign of an attack can, in some patients, be remarkably effective in lessening or even aborting an attack, this discovery lead to the use of Portable Oxygen tanks for Cluster-Headache patients. If you are in a cycle, go to your doctor, get a prescription for & start breathing medical-grade O2 at level 5 to 7 on the meter ... this can reduce the pain level a lot with no side effects. If not Tank is available try jogging in place and breathing very deeply. (Atkinson, 1977; Ekbom and Lindahl, 1970).

If there is nowhere to go and no O2 or medication, most cluster headache sufferers will get away from any people, and seem to feel more safe/comfortable riding out the pain in isolation and a dim environment. When mine struck at work I would sit in the bathroom for up to 90 minutes with my eyes shielded, trying not to start screaming and alarm people.

I and many others have found that it helps getting into a quiet dark room, away from people and performing various (almost autistic looking) physical motions, since the pain is often too intense to sit still ... and laying down is inconceivable.
I tend to pace, move my arms,rub my temples and scalp, rock back and forth, make various vocalizations, tap on things, touch or feel the textures of various surfaces, repeat desperate phrases, or some combination of the above.
it's not uncommon for CH patients to become so frustrated with the pain they are enduring that they will literally punch themselves in the face to try and knock themselves out, or bang the head into a wall in a desperate attempt to put to "fonzie effect" on it (like smacking a broken tv to fix a loose connection.) In extreme cases the patient may 'freak out' and inflict serious self-harm ... recalling the old name for the condition 'suicide headaches'

These behaviors would and Do look insane or psychotic to the 99.5% of the population who have never felt such non-fluctuating pain. That's why I will get in a closet, bathroom, utility room, or anywhere people won't see this tortured dance of pain. But these spastic looking motions are totally self-controlled. Since the pain is inescapable - i've tried zen, meditation, biofeedback, hot showers, It's a method to give the mind something to focus on other than the desire to flee or scream from the hot-poker like stabbing in the eye and brain. After an hour straight of this you need to do things to keep your sanity and have something to do & a sense of control over something even if it's simply repetitive motion or chanting.

I have gone from age 17 to 33 without taking ANY pain medication for my CH cycles, it can be done ... it takes a toll, but i did not feel comfortable with the side-effects if the standard medications. CH in itself does not damage your body, and the pain will go away on schedule. The Meds however, will damage your body and stay in your system, fogging your thoughts after the headache attack has subsided. This was too much for me ... but everyone is unique and it's possible you may find an acceptable combination of medicines to fight individual attacks.


What's all the buzz about these 'Magic' Mushrooms?
When my cycle started back again in 2001 I got online to see what the latest information was and if there were any new treatments. I went to 3 different websites and saw an increasing number of posts from people who had used small to medium amounts of 1960's style Magic Mushrooms to not only stop single headaches, but often ABORTING the WHOLE CYCLE. this was interesting to me because all the other treatments just worked on single headaches ... the full cycle still had to play itself out.
The Mushrooms seemed to both stop a headache in it's tracks and either diminish or stop the cycle in the clear majority of those able to get over the 'novelty factor' and legal issues of taking a psychedelic mushroom. however, compared to ALL of the other medications this treatment is the fastest, most effective and has the least side-effects. The main side effect being the experience of colorful and unusual perceptual changes for about 4 hours. There was such a huge groundswell of people trying this treatment with miraculous results, Harvard medical school has arranged to conduct human trials of the mushroom's active ingredient, Psilocybin and also LSD which seems to be equally, if not more effective.

I grew up in mississippi and these mushrooms,
'Stropharia Cubensis'
(click for encyclopedia listing with in-depth information), grow in the gulf-coast area abundantly in the spring thru mid-fall. As a teenager who didn't drink alcohol, they were the most fun 'free high' we could get.

Later I learned that over a dozen native cultures around the world have used these mushrooms for literally 1000's of years as an aid to healing, for contacting the 'spirit world' and developing stronger group and tribal kinship thru mutual deep visionary journeys. These cultures report no long-term ill effects from the 'magic' mushrooms, which are given reverent names such as "flesh of the gods" and "little angels of the meadow". (Read more about the history of ceremonial mushroom use in native cultures.)

Since i was familiar and comfortable with the effects, i tried a VERY small amount (1/6th of a normal 'fun' dosage) about 2 weeks into my cycle. The effects were immediate ... 50% shorter and 60% less painful headaches.
I waited 5 days and took about 2.5 grams of psilocybe cubensis mushrooms.
I had a mild and enjoyable 'trip' and that was IT ... period.
The cycle was gone ... it all seemed too easy, and for weeks
i was suspicious that it would come back.
...... It never did, but it's now almost 2 years later and my next cycle is due in february 2005.
When it starts I know what to do ... for the first time I am back in control.

Where can I interact with other Cluster-headache patients Online, and meet for help and support?


http://www.clusterheadaches.com/

This site is a tremendously GREAT information resource, very extensive & useful! Just about everything you might want to know about CH, research, ideas, stories, medications, tips and more. The Message board is very active, but be careful - some of the 'senior residents' on the message board are very, uh .... "sensitive". I was practically called every name in the book for just being a 'Liberal', LOL. Tell them "OPEY" sent you ;) - It was stupid, but i got some great CH info there.

http://www.clusterheadaches.ca/
The Organization for Understanding Cluster Headaches - This is OUCH canada.
it's a patient info resource. Diagnostic help, treatment info, message board, new research updates, worldwide CH links and more
.

http://www.clusterbusters.com/faq.html
This is the most recent FAQ on the mushroom treatment, the type of mushroom, medical info, methods and dosages, the pro's and con's, patient stories, statistics, patient surveys, info on the Harvard University psilocybin Cluster treatment study and other new cluster-headache research.

http://www.clusterbusters.com/2003.html
This is the relevant postings from the message boards around the web,
cataloging the eager-ness, the fears, the surprises, the trends and booming success
of the mushroom treatment for cluster headaches in many dozens of patients.


 
http://www.wired.com/news/medtech/0,1286,65025,00.html
Great news article on the Harvard Cluster-Headache / Mushroom Study and new applications for psychedelic medicines.
Finding The right doctor Is IMPORTANT.
It may be difficult ... and it may require YOU providing some education to your physician on this condition, it's rare enough to be unknown or misdiagnosed ba a majority of doctors.
Try to find a doctor who is sympathetic to your individual needs nad aware of the incredible intensity of CH pain It may also be worth getting an MRI or some other type of full neurological check-up to make sure your diagnosis is correct.
If you feel that your physician is unable to understand your predicament - find another one!! You need a doc who will work to find a treatment plan that actually works and be willing to try a number of options. I have heard of some patients having a hard time getting a prescription for an Oxygen tank! If this hapens to you ... find a doc who understands your condition and special needs.

How to keep a CH pain-level chart to show your doctor and track if your meds are working.

During my 2001 headache cycle I was feeling like nobody would EVER believe how much time i was spending huddled in a bathroom, closet or garage - waiting out the pain, and dreading the next attack, I had the idea of making a chart to track the daily time and intensity of my cluster headaches.

I made a chart that is one month long, broken into a grid of days and hours. In these blocks you simply fill in the correct color for the pain level you were at. After a week or so your particular cyclic timing and maybe even some of your triggers will be more obvious with this reference chart. Fill it in each day .. from the very first sign of a cluster cycle approaching and for 2 or 3 weeks after it's gone. Save them to analyze the larger cycles in your Cluster pattern and be able to plan accordingly. Download Blank Chart PDF or View an Example Chart


This is the intro I wrote when I joined the ClusterHeadaches.com website


I am a white male, 31 yrs old. Blonde hair green eyes, thin build.
Cluster type: episodic, normally once every year or 2 years, in the Spring. Lasting for about 2-3 months of 1-3 daily headaches Always occurring at about 11am, 2pm and 4 pm. Most happen around 1pm. The individual headaches normally last from 1 to 3 hrs.
Peak cycle ranges up to 9 or 10 on the kip scale,
i cant see light, cant sit still, have to be alone, get an aura, burning behind eye, and intense lightning like jabs of temporal pain - usually I rock, contort and rub my scalp in a vain attempt to give me something to focus on other than pain and pretend that i have some control over something.

I can remember having cluster headaches start up around age 17 to 19. Like many i thought it was some kind of sinus infection or problem. It seems like the early clusters were weaker - so it thought the sinus medication was working. At one point i thought it was caused by my teeth and had some dental x-rays taken. The prescribed me something to "dry my sinuses up" which had no effect on the headaches.

In my mid 20's the pain got worse, registering an 8 on the kip scale. I never had health insurance and never went to a doctor during this time. I just dealt with it, i had never heard of "cluster headaches" and was not even sure i had migraines yet. I was starting to see the cycle though and understand that it would go away eventually for another year or so.

I tried some medications that friends and family gave me to help the pain. Valium, xanax, lortab all had no effect other than making me sleepy and a tiny bit more dislocated from the pain.

I thought for a while that i had tracked the trigger to being lack of vitamin C, because i noticed that some cycles had come when i ran out for a month. Probably just coincidence.

in 1998 and 2001 the clusters were at PEAK PAIN. It was horrible because i had just landed a nice corporate webdesign job. I ended up spending a lot of time in the bathroom or a back hallway trying not to scream or freak-out. A few times a cluster came while driving and i had to sit in a parking lot for 2 1/2 hrs and then go in and explain it to work. Shitty. I'm also a saxophonist and a few times they hit at gigs which was terrible.

Started keeping a diary of dates times and intensity. Got insurance and got prescribed 2 things (forgot what they were - i think immitrex and an antipsychotic) but my cycle was ending so i didn't fill them. Plus i just hate to take meds of any kind - i try the natural stuff first. I have just recently started a new cycle, i'm 2 weeks into it and have been taking "migraactin" which has feverfew, magnesium, bioprene, ginkgo, and TMG. Seems to help a tiny bit ... like 10%, but it's hard to tell so early in the cycle. Also been reducing my sugar intake and drinking a big cup of black coffee right before cluster time.


I wanted to say some of the stories on here brought tears to my eyes. Cluster pain is something that only clusterheads can truly understand. I wish you all luck in finding the appropriate treatment.
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