Cluster Headache Patient Guide

Welcome to our New Patient Guide, where you will learn what cluster headache is, how it is diagnosed and treated, and what you can do to manage this painful condition.  You’ll quickly discover there is no “silver bullet” to stop cluster headaches. Cluster headaches are a primary headache disorder. The cause is unknown and there is no diagnostic test to confirm a diagnosis. It is a life-long ailment. There is no known cure. Symptoms may disappear for months or years, only to return again.

Diagnosis can take several years

Cluster headache is a diagnosis of exclusion based on the symptoms you experience. Those symptoms may mimic other problems, so you may have already been through years of testing and treatment trials before getting the diagnosis. The average time to diagnosis is eight years. This is largely because the much of the general medical community has never encountered cluster headaches and knows little about them. It is a rare disease, affecting approximately 1 in 1,000.

See the right kind of doctor

It is important to consult the right doctor. Few general practitioners know how to diagnose or treat cluster headache.  General neurologists are more likely to have studied cluster headaches, but many have never treated an actual patient. A headache specialist, on the other hand, has a focused practice on evaluating and treating headache sufferers. He or she will undoubtedly have more experience and training with cluster headaches. Choosing the right doctor for your headaches is likely is an important decision. You are forming a long-term relationship with an expert partner.

Get the right treatment

Treating cluster headache with painkillers is usually ineffective. These medicines have their place, but generally do not work very well for cluster headache. To make matters worse, they set the stage for prescription medication dependency and a worsening of headache pain. The treatment of cluster headache involves more than just pain relief. A good treatment plan includes abortive, bridging, and preventive therapies. If you are only prescribed an abortive, don’t hesitate to gently persist for additional treatment options or a referral to a headache specialist. Focus on prevention strategies and using acute pain management strategies proven to work.

Abortive Therapies

Abortive therapies are intended to do just that – abort the headache at its onset and stop the pain. One of the most critical factors in effectively aborting a cluster headache is getting the medicine to the problem, fast. Since cluster headaches come on rapidly and are of relatively short duration, medicines taken in pill form are generally not effective. The route of administration of the drug should introduce the medicine to the bloodstream fairly immediately, therefore, medicine by injection or inhalation will provide the highest likelihood of an effective and rapid abort.

Common abortive treatments:

  • High-flow oxygen
  • Sumatriptan injections
  • Zomig Nasal Spray
  • Lidocaine nose drops
  • Cayenne nasal spray
  • Vagus Nerve stimulation
  • SPG Nerve stimulation
  • Ketamine nasal spray

Bridging Therapies

Preventive treatments can take several days or weeks to kick in. Bridging therapies are designed to provide short-term relief while you find the right preventive treatment at the correct dose. They can also be used as preventives if your cycles are relatively short.

Common bridging treatments:

  • Prednisone
  • Greater Occipital Nerve Block
  • Sphenopalatine Ganglion Nerve Block
  • DHE infusions
  • Ketamine infusions

Preventive Therapies

Your doctor may need to rule out other headache types by prescribing certain medicines to test their effect on your pain. Indocin, for example is a highly effective treatment for hemicrania continua, a one-sided headache with symptoms similar to cluster headache. To rule out hemicrania, your doctor may prescribe Indocin over the course of several weeks. These trials are important because medicines that work for one headache type do not necessarily work for another.
Preventatives rarely stop cluster headache attacks altogether, but many do help to reduce the number of attacks and/or the severity of attacks. As a general rule, these are powerful medications that carry with them some significant side effects. It is a good idea to review all of your medications at every visit and eliminate any that are not working for you. Your doctor may add medications more frequently than he or she eliminates them. It will take some time to find just the right treatment combination. Every medication switch requires a washout period for the prior drug and a titration (ramping up) period for the new drug. Getting to a therapeutic level of the medicine in your bloodstream can require blood testing and dosage adjustments. These adjustment periods are not often pain-free and can be frustrating. The only thing you can do to shorten those trials is to communicate clearly and often with your doctor. If something is not working, call your doctor. Changes in dose or medications can often be done, even between appointments.

Common preventive treatments:

  • Verapamil
  • Depakote
  • Topamax
  • Lithium
  • Melatonin
  • Occipital Nerve stimulation
  • SPG Nerve stimulation
  • Vagus Nerve stimulation

Identify your triggers

For many cluster headache patients, there are specific foods, substances, or conditions that can trigger an attack. Typically these are consistent for an individual but are not necessarily the same for everyone. It may take a while to determine your specific triggers but over time you will learn what to avoid. If you know it’s your trigger but you decide to use it anyway, well, you know the risk.  Keeping a headache diary will help you identify your unique triggers.

Common triggers:

  • Alcohol
  • Artificial sugar
  • Asphalt fumes
  • Barometric pressure changes
  • Bonfires
  • Carbon monoxide
  • Cigarette smoke
  • Flashing lights
  • Gasoline fumes
  • Intense exercise
  • Insomnia
  • MSG
  • Nitrates
  • Propane fumes
  • Sudden temperature changes
  • Thunderstorms
  • Untreated sleep apnea
  • Wildfires

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