HOUSTON, April 2, 2012 — Your face and head start feeling odd. Sensitivity in the cheekbone and the eyelids start to increase. Then pressure begins building behind the eye, a feeling similar to that of sinus pressure.
Seconds later, a sharp stabbing pain suddenly occurs, often described as though a hot poker, or ice pick, was plunged through the eye. Usually the veins start swelling in the head, followed by nasal congestion, the eyes turning red as the eyelids droop, tears welling up, and the head sweating.
Depending on how long the episode occurs, the pain can then spread throughout parts of the head, cheek, jaw, teeth, and neck. This is not a migraine, sinus infection, or tension headach.
This is a cluster-headache.
I was diagnosed with cluster-headaches (CH) about ten years ago. Most who suffer from CH do so off and on for a few weeks and then experience a point of remission from the pain. Others, like myself, suffer from chronic cluster-headaches, where very few remission periods transpire (to this day I have had one).
I have passed out because of the pain before, waking up to realize that I have chipped a couple of teeth. I have had dates ruined and good times with friends cut short. I write this not for sympathy, as we all have crosses to bear, but to spread knowledge and reveal information that may help if you too suffer from this inexorable disease.
If you suffer from severe headaches, it’s crucial to know if they are CH since they are treated differently from other headaches like migraines. It’s also important to know and understand the beast you are dealing with.
Cluster-headaches affect approximately .1% of the population, 80% of which are men, and .5% suffer from chronic cluster-headaches. It’s like winning the world’s worst lottery. Professionals speculate that it is a hereditary disease and often surfaces when the individual is in his mid-twenties. In most cases, once the CH starts occurring, they last a life time.
CH is non-fatal but affects the quality of life for the sufferer. The cause of CH is unknown, although many studies point to the biological clock (located in the hypothalamus) with timing issues of the brain.
A CH can last from five minutes to several hours or even days for some individuals. Often CH occurs at the same time on a daily basis with several other attacks occurring in-between. Cluster-headaches are considered to be the most painful disease known to medicine; having a limb sawed off or experiencing child labor is less painful, literally.
They have also been called suicide headaches, for two different reasons. Some sufferers have banged their head against a table, or other hard object, so hard that it has lead to brain trauma causing death. Others, sadly, have committed suicide to escape this horrific disease.
The trauma of CH doesn’t always stop when the pain subsides, many find themselves in a state of shock, dreading their next episode, which they know is looming. CH has led to high blood pressure in some individuals along with anxiety, panic attacks, and depression.
Since there is no cure, and pain management is sometimes futile, the key is preventative therapy. The first step to preventing a cluster-headache is to realize some of the triggers. Proven triggers of CH include naps, an erratic sleep schedule, extreme temperatures or change of weather, and alcohol. Other experts theorize stress or relaxation may trigger them as well. Really?!?
Some professionals say food with triptans (like bacon), sex, and tobacco may trigger the headaches; however, in my experience this is not the case. Avoiding these triggers does not mean the CH will cease to occur, but it may curtail the frequency of them.
If you feel you may suffer from this disease, it’s vital to have a CT scan done to rule out anything terminal. If indeed you do suffer from CH, preventative medications include beta-blockers, tricyclic antidepressants, some anticonvulsants, calcium channel blockers, cyproheptadine (Periactin), and non-steroidal anti-inflammatory drugs (NSAIDs) such as naproxen (Naprosyn).
Many sufferers have a shortage of magnesium and 5-HTP so taking these supplements may help as well. Some people use acupuncture therapy as a preventative method with the results varying from person to person
The most effective preventative medications, however are, unfortunately, illegal such as tryptamines. Psilocybin and lysergic acid amide (LSA) are the hallucinogens most commonly used in this type of therapy (these drugs are illegal and this is not a recommendation).
Associate Research Scientist at Yale School of Medicine, Dr. Andrew Sewell, conducted an experiment in 2005 using psilocybin to treat cluster-headache sufferers. His results showed that out of 53 patients, only 6% found psilocybin to be ineffective, 48% rated it as 100% effective, while the rest said it helped curtail the pain for an extended period of time. Some felt relief for only a day or two, many felt relief for many months. Eighty-five percent found that when they took psilocybin during an episode that it completely aborted the attack.
During a CH episode there are a few things I have found that help me the most. A towel soaked with scalding hot water placed on the eye where the pain occurs, tends to lessen the pressure, therefore easing the trauma (some have said that cold temperatures helps them more than hot).
Pure oxygen also helps abort an attack, along with placing pressure at the base of the skull with your thumbs, slowly easing the pressure, and repeating; this tends to ease the pain.
Unlike a migraine, don’t sit still or avoid light! Try to distract yourself from the pain; time can only make the pain completely subside and often sitting or lying down worsens the pain. Don’t hide this hardship from co-workers, friends, or loved ones. It’s important they know what you are dealing with as you may become short-tempered, and it’s probably obvious something is awry since there are physiological effects on your body affecting your disposition.
Some studies are starting to show that CH affects the area of the brain that allows you to have patience in a given situation, whether you are experiencing an attack or not, so it is crucial that the important people in your life understand this disease. They can also bring you comfort, and sometimes comfort is all we have when there are few other options.
I also meditate daily, increasing my focus which then allows me to push forward with the task at hand. When these episodes first started occurring, I could only scream and hold my head.
Now, aside from the physiological effects, many people don’t even realize I am experiencing a CH because my mediation and positive affirmations allow me to remain calm.
CH sufferers often feel hopeless, depressed, and scared. Don’t allow yourself to wait around aimlessly waiting for the next attack. Become proactive and start researching and experimenting with medicine and natural therapies to see what works best for you, but most of all, don’t give up hope. I have found a way to lead a normal life for the most part, enjoying my time with others and valuing this life for what it is, a gift.
“I could never say in the morning, ‘I have a headache and cannot do thus and so. Headache or no headache, thus and so had to be done.’” – Eleanor Roosevelt
Carter Lee is the author of, When Jonathan Cried for Me, President of Innovative Social Dynamics LLC., is a professional speaker, and is the co-host of Really Genius Radio. To learn more about his media appearances, radio show, book, or to schedule an appearance or speaking engagement visit www.innovativesocialdynamics.com
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