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In this section:
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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
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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.
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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.
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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.
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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.
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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
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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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