CLUSTER HEADACHE

Everything, all at once.

Just because cluster headache is less common than migraine doesn’t mean there isn’t a community of patients, doctors and advocates waiting to support you. Learn more about medications, treatments and symptoms here.

What is Cluster Headache?

Cluster attacks are extremely painful episodes that occur in clusters. Cluster headache is a form of Trigeminal Autonomic Cephalgia (TAC). It is less common than migraine disease, but it is more prevalent than most people realize. An estimated 1 in 1,000 Americans experience cluster attacks. Cluster attacks are frequently described as the most painful physical experience a person can experience. 

cluster headache

Treatment Options for Cluster Headache

Cluster headache is not the same as migraine disease. It is often treated differently than migraine disease. CHAMP participant Clusterbusters has an in-depth overview of treatment options and choices for those living with cluster.

LEARN MORE HERE 

Not Sure if you Have Cluster Headache?

The first step to get the treatment you need is an accurate diagnosis. Clusterbusters has helped refine a diagnostic tool to help people identify what headache disease they may be living with. The Computerized Headache Assessment Tool (CHAT-III) is an algorithm-based online tool. It helps people recognize primary headache diseases, such as migraine, tension-type headache and cluster headache.

LEARN MORE ABOUT THE CHAT-III 

DIAGNOSTIC TOOL 

cluster headache

Tips & Tools

Approval for disability benefits can be an uphill battle. In the United States, cluster headache is not considered severe enough to warrant disability, so most claims are denied immediately. However, the process is not impossible. It can even go smoothly if you are prepared and well-informed. Here are some tips to help you along your journey to getting approved:

1

Get familiar with the Family Medical Leave Act

Depending on how long you’re planning to be away from work, the FMLA can be essential in protecting your employment. This act protects your job at any company with over 50 employees for 12 weeks during each 12 month period. It ensures that your health insurance is still covered. You must be able to return to your job at the end of the period.

3

Understand the difference between short- and long-term disability

Short-term disability is a stopgap for taking time off while waiting for long-term disability to kick in. This is usually for a period of 90 days. You’ll want to communicate with your employer about your options in this crucial waiting period.

5

Talk with your evaluator about the nuances of Cluster

The person evaluating your disability claim may know nothing about cluster headache. They may even think of it as just a headache. It is important to change their mind so they can understand what you’re experiencing. Catalogue all your symptoms and attacks in a headache diary.

7

Build a Cluster History

Write, write, write! The best way to document your disease is to write it down. Keep a headache diary for at least three months. This makes it clear that your cluster disease is painful, and even with treatment, it prevents you from working.

2

Make sure you have support from your doctor

If you don’t have a doctor on board, it's unlikely your claim will be accepted. Showing that you’ve sought medical treatment from a qualified doctor is a huge step toward receiving disability.

4

Buckle up for a lot of paperwork

You’re applying for disability because you can’t manage your pain while working full-time. This means that you will likely need help with the mountains of paperwork involved. Be honest about your limitations. Ask for help when you need it!

6

Determine if you need Social Security Disability Income

Short- and long-term disability is provided by your employer. Separately, SSDI comes directly from the government. Some employers require that you apply for SSDI in addition to their support. Research what you will need for an application.

1

Get familiar with the Family Medical Leave Act

Depending on how long you’re planning to be away from work, the FMLA can be essential in protecting your employment. This act protects your job at any company with over 50 employees for 12 weeks during each 12 month period, and ensures that your health insurance is still covered and you must be able to return to your job at the end of the period.

2

Make sure you have support from your doctor

If you don’t have a doctor on board, you can be pretty sure that your claim will not be accepted. Showing that you’ve sought medical treatment from a qualified doctor is a huge step towards receiving disability.

3

Understand the difference between short- and long-term disability

Short-term disability is a stopgap for taking time off and waiting for long-term disability to kick in. This is usually for a period of 90 days, but you’ll want to communicate with your employer about what your options are in this crucial waiting period.

4

Buckle up for a lot of paperwork

The reason you’re applying for disability is because you can’t manage your pain and still work full-time, so understand that you will likely need help with the mountains of paperwork involved. Be honest about your limitations and ask for help when you need it!

5

Talk with your evaluator about the nuances of Cluster

The person evaluating your disability claim may know nothing about Cluster disease, and even think of it as ‘just a headache’. Remember that it is important to change their mind so they can understand what you’re going through. Make sure you’ve catalogued all your symptoms and attacks in a headache diary.

6

Determine if you need Social Security Disability Income

While short and long term disability is provided by your employer, SSDI comes directly from the government. Some employers will require that you apply for SSDI in addition to their support, so make sure to research what you will need for an application.

7

Build a Cluster History

Write, write, write! The best way to document your disease is to write it down. Keeping a headache diary for at least three months will make it clear that your cluster disease is not only painful, but also prevents you from working even with treatment.

There is a treasure trove of resources out there to help you find your way. Together, we don’t have to go it alone.

Change language. Reduce stigma.

The language used by medical experts, the media, the public, and stakeholders of this community can greatly impact how people living with headache diseases are perceived and treated. This, in turn, affects the resources society makes available to support the community’s pain and disability.

LEARN HOW TO TALK ABOUT HEADACHE 

Can children have headache disease?

Are you concerned your child might have a headache disease? Learn about the symptoms of migraine, cluster and headache diseases in children, how to spot them, and other tips to help you and your child.

LEARN MORE AT MIGRAINE AT SCHOOL