NEW DAILY PERSISTENT HEADACHE

Starts and never stops.

NDPH is less common than migraine BUT the impact it can have on your life is enormous. Learn more about medications, treatments and symptoms here.

What is New Daily Persistent Headache?

New Daily Persistent Headache (NDPH) is a rare chronic headache disorder. New Daily Persistent Headache is a type of headache that starts one day and is constant from the onset. Most people with NDPH do not have a history of headache. One unique thing about NDPH is that most people with it can remember the month or day when it started. NDPH has two subtypes: 1) a self-limiting subtype that typically resolves within several months without therapy, and 2) a refractory subtype that is resistant to aggressive treatment regimens.

Treatment Options for NDPH

There aren’t any NDPH-specific drugs, doctors rely on medications they have used to treat migraine and now there are new treatment options available that are specific to migraine, i.e. CGRP antagonists. Please go through the lists and classifications below to see potential options. We advise you to discuss any medications options with your doctor to determine the best care plan for you.

LEARN MORE HERE 

How is NDPH diagnosed?

NDPH is a diagnosis of exclusion, meaning that all other medical causes must be ruled out for the diagnosis to be made. According to the International Classification of Headache Disorders, NDPH “must not be accounted for by another ICHD-3 diagnosis,” including chronic migraine, chronic tension headache, or hemicrania continua. The criteria for an NDPH diagnosis are:

Persistent headache, daily from its onset, which is clearly remembered. The pain lacks characteristic features, and may be migraine-like or tension-type-like, or have elements of both.​

    1. Persistent headache fulfilling criteria B and C
    2. Distinct and clearly-remembered onset, with pain becoming continuous and unremitting within 24 hours
    3. Present for >3 months
    4. Not better accounted for by another ICHD-3 diagnosis

We recommend seeing a Headache Specialist for proper diagnosis

cluster headache

Tips & Tools

Approval for disability benefits can be an uphill battle. In the United States, NDPH may not be 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.

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.

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.

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!

5

Talk with your evaluator about the nuances of NDPH

The person evaluating your disability claim may know nothing about cNDPH. 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.

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.

7

Build a NDPH 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 NDPH is painful, and even with treatment, it prevents you from working.

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