It can be rough withdrawing from other medications in order to use this treatment. It’s hard when those slap-back attacks come around in between doses and when the beast doesn’t let go at first. There are many treatments, however, that will not interfere with or enhance the treatment. Here are some classic (and some not-so-classic) ways clusterheads have learned to deal with the Beast without the usual prescription drugs.
Oxygen – One of the best ways to abort an attack. Oxygen is very effective when used properly, has few if any side effects, is perfectly legal with prescription, and is relatively affordable.
Oxygen must be used properly – high flows of pure oxygen through a non-rebreather mask are needed to stop cluster attacks – at minimum, 7 to 12 liters per minute, and more is better. The high-flow oxygen should be used for enough time; some say at least five minutes after the attack has stopped.
Its main danger is fire. Oxygen must be handled carefully; it does not burn itself, but it supports combustion. It can turn a cigarette into a road flare, and can settle into your clothes, so a spark later on can literally set you on fire. So there’s no smoking or any other playing with fire around oxygen. Tanks should be carefully stored so a leak won’t accumulate in an enclosed space.
Another potential problem is falling asleep with a mask strapped to your face. Cut the strap off non-rebreather masks to prevent this problem.
A major hurdle for using oxygen is convincing doctors and pharmacists of the proper use and equipment needed. There are ways to help them understand.
Non-rebreather masks are designed to deliver straight oxygen, without mixing in room air or exhaled breath. Inexpensive non-rebreather masks are available, but masks designed for cluster treatment are endorsed by many clusterheads as worth the extra price.
Rebreather masks mix room air with the oxygen. Nasal cannula deliver very low flows and mix in room air as well. Neither is useful for cluster headache.
Ben Kahn, a clusterhead from the UK, redesigned the standard non-rebreather mask several years ago by improving the seal to the face, enlarging the reservoir bag and lengthening the supply line. His “Clustermasx” delivered more and higher-purity oxygen. The long supply line allowed clusterheads to pace, as we must often do, while using it.
UK law prevents Ben from building and distributing his Clustermasx, but others are using his ideas.
The flow of oxygen through the mask must be high – higher than for other medical uses of oxygen. Seven to 12 liters per minute is minimum, and higher flows might be better yet; some use 15 to 20 liters per minute, and say this is very effective.
The flow is set by a regulator, and many standard regulators won’t deliver enough flow to treat cluster headaches. The regulator should be capable of delivering at least 12 liters per minute, and there are better regulators that extend the range to 25 liters per minute .
Oxygen should be used for at least 10 to 15 minutes. Some may find relief in a shorter time, but attacks may return if not used for long enough. To help keep attacks from returning, continue breathing the oxygen for five or ten minutes after the attack stops.
Cut off the strap!
Many non-rebreather masks come with a strap to hold the mask in place. Remove this immediately. Oxygen can deliver such effective relief that clusterheads can fall asleep while using it. This can lead to breathing oxygen for hours rather than minutes, with the potential for damage to the lungs and airways, and completely wasting the oxygen supply. In extreme situations, there is the potential for the oxygen in etc) the tank to run out, and with a tight-fitting non-rebreather mask there is a risk of suffocation. You want the mask to fall away if you fall asleep.
Oxygen is very dry and some complain that heavy use dries the throat. Some use a “bubbler” to pass the oxygen through water to moisturize it, but this may not work well at high flows, as it tends to force water into the mask.
Oxygen is such a useful tool for treating clusters we have included an entire page on the subject. See OXYGEN INFORMATION: Oxygen
TRY THIS: SUBSTANCES TO TAKE
Caffeine and energy drinks
Caffeine, lots of it and drank very fast, is an old standby for emergency treatment of attacks.
Some swear by multiple cups of hot coffee, or to drink it more quickly, cold coffee or iced tea. The idea is to drink a lot and at the first sign of an attack.
Energy drinks such as Red Bull or Monster (there are dozens of brands) seem effective for many. Down them quickly at the first sign of attack. These drinks typically contain caffeine and taurine, with a number of other additives, including B vitamins and ginseng and other fashionable herbs.
Whether the taurine in these drinks helps or whether the caffeine alone does the trick is an ongoing debate. In any case, they are easily available in convenience stores, groceries and such. Many contain as much caffeine as a cup of coffee, but some brands have much more. Such large doses of caffeine can be a problem, so it is wise to be aware of what you are drinking.
Some clusterheads have found drinking lots of water throughout the day can help . Drinking at least eight glasses a day – about half a gallon – or as much as a gallon of water a day can reduce the number and severity of attacks. It may take several days of this to see an effect.
Be careful! Drinking too much water can lead to a loss of water-soluble vitamins. A small daily multivitamin can help replace the water soluble vitamins lost. Drinking extreme amounts of water can lead to a dangerous condition known as hypotremia, where the salt levels in the body can be upset. This can lead to serious heart and brain problems, and in rare and extreme cases, death.
A few have found water can be used to abort an individual attack. Chugging down a full quart of water (liter) of cold water as quickly as possible – within a minute or two – might sometimes stop the beast in its tracks. This doesn’t work for everyone and its not completely reliable, but it’s inexpensive and easily available.
However it’s used, water has a reliable and well-known side effect. Stay close to a rest room.
Ginger for the Shadows
By shadows, we mean those mild, slightly painful but persistent feelings of cluster in between attacks, sometimes right before an attack and serving as a warning, or lingering afterwards, sometimes all day long. A tasty treatment for this is ginger, fresh root or dried powder, made into a ginger tea.
A teaspoon of ginger simmered in a cup of water, sweetened to taste, is a pleasant way to hold off the shadows for a couple of hours. Ginger doesn’t dissolve well, so simmer the powder or finely chopped ginger root for a while, and keep stirring while you drink.
In hot weather, a very strong ginger ale or ginger beer can do the trick enjoyably. Look in health food stores or delis for brands such as Reed’s Extra Ginger Brew, Ginger People’s Ginger Beer, Natural Brew Outrageous Ginger Ale or Blenheim 1903 Hot Ginger Ale. The usual ginger ale used for mixers, such as Schwepps or Canada Dry, is not strong enough.
A company called The Ginger People makes strong ginger candy in several varieties (www.gingerpeople.com).
While most pain medications do little or nothing for clusters, some folks resort to them in a pinch. A few have reported over-the-counter mixture of a pain reliever and caffeine (Excedrin for example) will help with shadows or very mild attacks. Remember that such “safe” OTC medications do have their dangers when used too much of for too long. Aspirin, ibuprofen and other NSAIDS can cause serious stomach problems and even a little too much acetaminophen can damage the liver.
Not even heavy-duty prescription pain medications work very well on clusters, and the opiate-based pain relievers carry the risk of dependence and addiction. Some report that emergency room doses of morphine can be effective in a way – while the pain is still there, you just don’t care. Depending on these sorts of drugs is a dangerous game.
DO THAT: PHYSICAL ACTIONS TO TAKE
Intense aerobic exercise
Some have reported that 10 to 20 minutes of intense aerobic exercise can abort an attack. Clusterheads have been seen sprinting around the block in otherwise respectable neighborhoods in the middle of the night in their underwear. Carry identification; you may meet the police. An exercise bike will do the trick, but you have to pedal hard. The idea is to get your heart rate and breathing up as much as possible, but make sure you are healthy enough for intense exercise. There is no point in trading a cluster attack for a heart attack. Clusters may hurt like hell, but they won’t kill you.
Clusterheads have thousands of preferred methods of using cold to help ease attacks: Ice packs, bags of frozen vegetables, cold towels, sticking your head in the freezer, standing with a cold shower blasting on your head, pressing your eye against air-conditioning ducts, going out in subfreezing weather in your pajamas. Anything that gets the body temperature down can sometimes help.
There are two ways to go – apply cold at the site or all over.
Apply something cold — ice pack, frozen peas, air conditioning vent, cold shower spray – right to the site of the cluster attack.
Get the entire body cold. Stand outside in your underwear in January, put cold packs on your forearms, while standing on cold concrete in your bare feet – anything to cool the blood and bring your core body temperature down.
Everyone is different in what seems to work best, so go with what seems right and see how it works for you.
On the other hand, some clusterheads need heat. Hot packs, hot towels, hot showers, heating ducts. Heat seem to work topically – right on the attack site. Overall heat seems to make things worse for many (some say an overheated room or hot sun will bring on an attack).
Relaxation and meditation techniques
Some people can pull this off, but trying to relax and focus and control breathing while the Beast is grinding out your eyeball is not easy. A few people report it can be helpful.
Redirecting blood flow. A well-known and well-liked clusterhead named Charlie says a doctor taught him a way to concentrate on redirecting blood flow into his arms, and it works for him sometimes. Charlie said that by focusing on how the blood flows in his body, and imagining the blood flow being directed away from his head and into his hands and forearms, he was able, when acting quickly enough to head off a cluster attack.
Some say they use various meditation, relaxation and breathing techniques when they feel an attack coming on. Sometimes it helps endure the attack and sometimes the warnings never develop into an attack.
And then there’s sex. There are reports that masturbation or intercourse can stop an attack. Getting in the mood with the Beast around is the problem, and even then…let’s just say practical considerations limit usefulness.