Cluster Headaches Disability Guide

Cluster Headaches and Disability

Invisible-disability.png Cluster headaches can be very debilitating and at some point you may begin to question whether or not it makes sense to continue working. Generally speaking, episodic cluster headaches would not qualify as a disability in the eyes of the government, but they may justify a short-term leave from work. Chronic cluster headaches that have endured for a year or more and are debilitating may justify a longer absence from work or even full disability. Confounding factors, such as dizziness, vertigo, confusion, anxiety, and depression may all be factors that make it impossible to work. Whatever your reason, it is helpful to have a good understanding of how both private and government paid disability insurance works. The intent of this guide is to provide an overview of the options available to you as a cluster headache sufferer.

It is expected that this document will be co-edited by the members of the forum so that it is as accurate and complete as possible.

Some general concepts to consider:

  • Disability is a limitation of your ability to work that may be full or partial.
  • Disability insurance is paid for by the insured (you) or by the insured's employer on their behalf. It guarantees a certain level of income should you become unable to work for an extended period of time due to a disability.
  • Falsifying information to collect insurance payment is considered insurance fraud and is illegal
  • Being on disability leave is not a paid vacation - it means living a disabled lifestyle that likely won't include golf, skiing, or flying off to Jamaica. Think that through very carefully.

Disability in the U.S.

Before you begin down this path, you really need to determine if you are in fact disabled. There are two different shades of this answer: from a private employer/insurer perspective and from the government's perspective. The Social Security Administration (SSA) administers Social Security Disability Insurance (SSDI) for the U.S. government. According to the SSA, being disabled means that you are unable to work at any job, period. That does not imply the condition is permanent, which is a common misconception, it simply means that you are currently unable to work and will not likely be able to return to work for one year. From an employer and private insurer perspective, disability is related to your ability to perform the job that you were hired to do, at least initially. Given that these may be two vastly different scenarios, we'll treat them separately.


The Family and Medical Leave Act (FMLA) applies in all cases. FMLA entitles eligible employees to take up to 12 weeks of job-protected leave for specified family and medical reasons with continuation of group health insurance coverage under the same terms and conditions as if the employee had not taken leave. That does not imply paid leave which would be at the discretion of your employer. It does mean that the employer is required to allow you to take up to 12 weeks of leave in a year. That time does not have to be consecutive. A letter from your doctor is usually sufficient to qualify for leave for medical reasons.

FMLA is a good place to start if you are having trouble making it to work some days. Let your employer, both supervisor and human resources, know what is going on with you and that you may need to take a periodic leave. Talking to your human resources representative is not "going over your supervisor's head". You should definitely talk to your supervisor first, but HR will understand the legal obligations of the company better than your supervisor and will provide you with appropriate job protection. A word of caution is that they are not often your "friend," but they will be fair. In a case like this it is better to be up front about your condition rather than for your situation to be represented as a performance issue.

For more information on FMLA, visit the US Department of Labor site.


Social Security Disability Insurance is paid for by you through your payroll deductions. In order to qualify for SSDI, you must meet the following criteria:

  • have a physical or mental condition that prevents you from engaging in any "substantial gainful activity", and
  • the condition is expected to last at least 12 months or result in death, and
  • they are under the age of 65, and
  • generally, have worked 5 out of the last 10 years as of the determined date of onset of disability

SSDI will provide monthly income for you and your dependent children during the time that you are unable to work. This includes back pay for the period that you have been out of work as a result of your disability. The amount you are eligible to receive may vary depending on your employment history. Your Social Security Statement will provide you with your specific benefit and should be mailed to you on a regular basis. If you need a copy of this statement, you can request one here. The amount that your dependent children will receive may be more difficult to determine ahead of time, but generally is substantial. The maximum individual benefit is $2,224/month and the maximum total family benefit is $3945/month.

Before considering an application for SSDI, make sure that you qualify for benefits under the SSA guidance. Do I qualify? If you feel that you qualify, you will need to consider how you will apply. There are two ways to approach you application: directly through the SSA application process or through a third party social security disability benefits facilitator. Either way, the approval process will take some time. The current backlog of SSDI applications is significant and getting a priority review can be very difficult. Expect a minimum wait of 4-8 months and as long as 2-3 years.

The success rate of applications improves greatly with the experience of your representative. Individual applicants have approximately a 52% success rate compared to a 67% success rate with legal representation according to a recent study by the Office of Disability Adjudication and Review (ODAR). Third party representatives boast success rates upwards of 80-90%. My personal experience was with Allsup and I was approved in 5 months.

The cost of legal representation or a third party company should be made clear at the start of the process. As opposed to other areas where individuals may have their interests professionally represented, those who represent social security disability and ssi claims have caps on what they may charge. An Attorney or Representative for a disability case is allowed to receive 25% of a Claimant's past due benefits. So, if a Claimant recieves a backpayment of $10,000.00, a representative will receive $2,500.00 as the fee. The maximum fee allowed is $6000.

The SSA provides a fairly straightforward, although lengthy online application process. You should read thoroughly through the Disability Starter Kit to get a sense of what will be required. If you decide to go at it alone, it is highly recommended that you use the online application process. Having your information available electronically for review will speed the process.

Note that SSDI income may be taxable if you earn income in addition to SSDI payments.


Supplemental Security Income is a program managed by the Social Security Administration that makes payments to people with low income who are age 65 or older, are blind, or have a disability. SSI is funded from the general government budget. Do not confuse SSI with SSDI - they are entirely different programs.

Private Disability Insurance

There are many types of private disability insurances that may be purchased by individuals or by companies on behalf of employees as a component of their benefits package. For example, if you are a sole proprietor of your own business, you may purchase Key Person disability insurance or Business Overhead Expense insurance to ensure that operations are maintained should you become disabled. Short-term disability insurance policies are typically held by larger companies on behalf of their employees so they may cover employee income should the employee become temporarily disabled due to an injury or illness incurred off the job. Long-term disability insurance held by an individual or through a company plan is designed to cover a portion of employee income should you become disabled for an indefinite period of time beyond the term of any existing short-term disability plan. Long-term disability plans may be effective for a couple of years or up to retirement age.

Tax laws are very specific regarding these insurance payments. As a general rule, income you receive from an employer-paid insurance plan is taxable as regular income. Income you receive from disability insurance that you paid for is not taxable. Therefore, if you elected to pay the premium for your long-term disability insurance, it is not reportable as income for internal revenue purposes. The tax picture is an important consideration in understanding your total potential income while on disability. As a general rule, assuming you are receiving non-taxable insurance payments of 60% of your base salary, you are effectively making an equivalent of approximately 75-90% of your prior income, depending on your tax bracket.

Disability insurance is typically capped at a maximum monthly payout. In most circumstances that will be around $10,000/month.

Keep in mind that job-related illnesses or injuries are covered by worker's compensation insurance, not disability insurance. Worker's compensation insurance is manadatory for all employers. Worker's comp provides remuneration for income, related medical expenses, and other costs incurred by the employee as a result of the injury. For more information, look here.

Short-term Disability Insurance

Short-term Disability Insurance is typically a company paid benefit that provides employees who have become temporarily disabled with a portion of their salary for the period they are unable to work. Typical short-term disability payments are 40-65% of your base salary; however, they may be as high as 100%. Short-term disability periods vary, depending on the specific insurance policy held by your company. Six months is a typical duration, but some may last up to two years.

In general, short-term disability insurance will kick in as soon as an employee has exhausted their paid sick days. Depending on your company, there may be more flexibility allowed, however, the intent is also for the company to cover their cost of having you out of commission. When the short-term disability insurance is invoked, they are no longer paying your salary. This benefits both company and employee in the event of an unforeseen disability and is an anticipated part of business.

If you and your doctor feel that you are currently unable to work, this insurance is intended to accommodate such a need. Keep in mind, however, that the company's obligation to return you to your current job, or any job, is limited to FMLA rules. Before you go down the path of taking disability leave of any kind, make sure you understand your company's position on returning you to work and to your specific job. The better your standing with the company, the more likely you will be returned to your present job. Consider also the company's situation should you remain absent for an extended period. How long will they be able to continue normal business operations without having to replace your position? These are of course serious considerations and are the reality of determining if you are ready to go this path.

At the end of the day, Short-term disability is intended to help you and keep you as a valued employee while you mend from a short-term illness or injury. That implies that there will be a plan to recover and an end in site for the disability.

Long-term Disability Insurance

Long-term disability (LTD) insurance kicks in after short-term disability insurance has expired. Long-term disability insurance is often not paid by the company, rather is offered as an optional employee-paid insurance benefit. For individuals working at companies that do not offer long-term disability insurance benefits, individual LTD policies are available from most major insurers. As a general rule, it is better for the employee to pay for this insurance than the company because employee-paid LTD insurance payments are tax free. LTD insurance provides benefits for either 2-5 years or until retirement age, depending on the policy.

LTD typically pays 50-60% of your base salary at the time the disability begins, depending on the policy. Again, that would be non-taxable income if it is an employee-paid policy, so it may be equivalent to 75-90% of your pre-disability income. The payment amount determined at the start of your long-term disability establishes your base income level for the duration of the disability. If you have other income from social security, work, or other sources during your disability, the insurance company will deduct that amount from their monthly payout up to your base income amount. If at some point you are earning the equivalent of your base, your LTD insurance may be terminated. Most regular LTD insurance policies are capped at a maximum amount payable per month - around $10,000. There are high-cap policies available at additional cost.

The insurance company covering an LTD claim will require periodic review of your claim, including access to all medical records, pharmacy records, income statements beyond the insurance payout, personal logs about your disability, and other information requests at their discretion. Depending on the potential duration of your claim, the insurance company may have a considerable financial obligation to you and, for that reason, may seek to reduce or eliminate that burden. If you claim that you are unable to work, but are found to be working under the table, that will likely (and appropriately) be prosecuted as fraud. If you say that you cannot lift 40 lbs, then building a concrete patio in your back yard would probably be grounds for cancellation. You get the picture - be very clear and honest about what you can and cannot do and consider that your real limitation.

Opting-in to long-term disability insurance coverage is wise for anyone in the working world. You never know what can happen.


For a cluster headache sufferer finding it difficult to maintain reliability and performance on the job, disability leave may be a consideration. The irreparable damage to your reputation and work history from poor performance and possibly being fired because you have an illness that few understand may be difficult to overcome. A key consideration to keep in mind is how long you will need and what will actually change to make it better.

Long-term disability and social security disability carry with them some fairly significant changes in how you may be accustomed to living your life. However, they are not necessarily permanent and can help you maintain your bills while you get yourself to a better state. Taking this longer-term step will almost always mean losing your current job. However, if you are truly disabled, you have little choice in that matter anyway and would be wise to take advantage of the insurance you've paid for.

Unless otherwise stated, the content of this page is licensed under Creative Commons Attribution-ShareAlike 3.0 License