20 Facts About Cluster Headaches

20 Facts About

Cluster Headaches

— And Five Ways You Can Help

Thank you for your interest in learning about cluster headaches. Your

knowledge and awareness can improve lives, and even save them.

20 Facts About Cluster Headaches

1. A prominent medical expert

has described cluster headaches as

“probably the worst pain that humans experience.”

A cluster headache attack is worse than the pain of shattered bones, of

severe burns, and of childbirth. A Harvard Medical School

professor has described it as being like having an arm or leg

amputated without anesthetic.

2. Cluster headaches are not “headaches” in any conventional

sense. They originate in the brain, and they involve a very

sensitive and very long nerve system in the face. The pain has

been compared to having a red-hot knife shoved into the eye

and held there. During an attack, the pain typically also radiates to the

forehead, temples, teeth, palate, nose, sinuses, jaw, and neck.

3. Cluster headache attacks typically last from 30 minutes to

three hours or more.

They often occur at similar times each day,

often shortly after the person has fallen asleep.

4.Conventional pain medicines, even the strongest opiates such as

morphine, usually have little or no effect on cluster headache pain.

5.Cluster headaches are often described in medical literature as

“suicide headaches.” The suicide rate among people with cluster

headaches is 20 times the national average.

6.A person with episodic cluster headaches might get one, two, or

more attacks each day over a period of months. Then the

attacks go away, as mysteriously as they came, until they

typically return several months later.

7.A person with chronic cluster headaches will have one or more

attacks each and every day—most typically, they will have three

to five or more attacks each day. This will continue for years

without any breaks of longer than two weeks.

8.Some medications can sometimes prevent cluster headache

attacks, or reduce the severity of attacks. These medications or

treatments often do not work, or lose their effectiveness over

time. They almost always have severe, undesirable side effects,

and they often cause “rebound headaches” that are more severe

than the original attacks that they were

supposed to prevent. They may even lengthen an episodic cycle.

9.Individual cluster headache attacks can sometimes be terminated or reduced in severity by inhaling pure oxygen through a mask for about 20 minutes. This treatment has no side effects

when used properly, but it is not always effective, particularly

when the person with CH has been awakened from sleep by

pain that has already reached a high level of intensity.

10.

A recent study showed that many physicians do not prescribe

oxygen to their patients, even though it is the preferred method

for aborting cluster headache attacks, as recommended in a

peer-reviewed study in the prestigiousJournal of the American

Medical Association.

44 percent of patients had to suggest

oxygen to their physicians; 12 percent of physicians refused to

prescribe oxygen; 50 percent of cluster headache patients using

oxygen never received training in its proper use; and 45 percent

of CH patients had to find their own source for oxygen.

11.Other pharmaceutical methods can help

terminate a cluster headache attack, the most common being self

-injected sumatriptan and other similar medications. This method does

not always work, and it has pronounced side effects.

12.People with cluster headaches have developed and disseminated, on their own, a wide range of non

-pharmaceutical treatments that sometimes help with cluster headaches and

sometimes do not. There are more than 20 such treatments

that people with cluster headaches could try in order to

prevent, abort, or lessen the severity of their attacks.

13.There are at least five different categories of pharmaceutical

drugs that can be used to try to prevent cluster headaches, and

there are several methods and drugs that can be used to try to

abort cluster headaches. As mentioned above, most (except for

oxygen) do not work reliably, and most (except for oxygen) have

strong, undesirable side effects.

14.Because there are so many possible treatments between

pharmaceutical medications and non-pharmaceutical ones, and

because most do not work with a high degree of reliability as

either preventives or abortives and because cluster headache

pain is so excruciating people with cluster headaches can

become despondent and hopeless. Depression is common

among people with cluster headaches.

15.

Very little funding is allocated to research on the causes of

cluster headaches and possible treatments for them.

16.Post-Traumatic Stress Disorder (PTSD) is also common among

people with cluster headaches. Even if they are episodic

sufferers and out of cycle, they virtually always live in fear of

the return of the terrible pain.

17.Because cluster headaches are relatively rare, they are usually

misdiagnosed by doctors who have very little experience with

them. The typical time between a first doctor visit and an

accurate cluster headache diagnosis can be from one year to

more than six years.

18.During the time before they are accurately diagnosed, cluster

headache patients are given ineffective

medications for conditions that they do not have, such as tension headaches,

migraines, sinus problems, allergies, or tooth

-related issues.

They also are often treated as though they are exaggerating

their suffering or overreacting to it, and in need of psycho-

logical counseling.

Many undergo painful eye, sinus, or TMJ

surgeries, or have multiple teeth extracted, in fruitless attempts

to relieve their cluster headache pain.

19.In formal and informal medical reports, studies, and trials,

psychedelic substances such as psilocybin, LSD, and LSA, often

taken at subhallucinogenic or only lightly hallucinogenic levels,

have been shown to prevent cluster headaches for extended

periods, as well as to abort individual attacks.

Because of the

legal or personal issues involved, most people with cluster

headaches do not try these substances.

20.A patented medication, BOL

-148, has been shows in trials to be

extremely effective against cluster headaches.BOL-148

contains a very high dosage of LSD that is rendered non-

hallucinogenic by the addition

of a bromine atom to the LSD

molecule. Although this medication has great promise for

treating cluster headaches, the company that holds the patent

has been trying for many years to raise capital for approved

clinical trials. So far, the company (Entheogen) has not been

able to raise sufficient funds to advance BOL-148 toward

commercial viability.

Five Ways You Can Help

1.

People with cluster headaches often find that others, even family

members, do not understand the severity of their pain or the

difficulty of their situation. Your understanding can help.

2.

People with cluster headaches are often very strong and resilient,

determined to live happy, productive lives despite their pain. They

deserve your respect and your support.

3.

Funding for research into the causes of cluster headaches and

possible treatments is very small. You could encourage your elected

representatives to increase funding in this area.

4.

If you encounter a person who is experiencing severe head pain

and is not getting relief through prescribed medications, encourage them to learn more about cluster headaches and to go a toheadache center, where doctors are more likely to recognize cluster

headaches and prescribe treatment.

5.

A donation to ClusterBusters will help fund research, education,

advocacy, and support. To donate,please go to

www.clusterbusters.com

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Thank you!

ClusterBusters

An IRS

-approved 501 (c) (3) nonprofit organization dedicated to finding relief

from cluster headache through research, education,

advocacy, and support