I'm happy to present the following guest blog contribution. It's on a very important topic to many people suffering from cluster headaches. Any time we have the opportunity to present expert opinions on important topics, we strive to bring it to our members and the general public.
Deanna Power is the Director of Community Outreach at Social Security Disability Help, an independent organization dedicated to helping people of all ages receive Social Security benefits. She specializes in helping families determine whether or not they medically qualify for benefits. If you have any questions on how cluster headaches may qualify, or need any additional help, she can be reached at drp@ssd-help.org.
Deanna's experience with SSD and also being the supporter of a cluster sufferer makes her uniquely qualified to speak out on the subject. Thank you Deanna for helping us educate and advocate for the cluster headache community.
If you experience cluster headaches, you know how completely debilitating they are. Research is completely underfunded, treatment success completely varies by patient, and the cluster community is wildly underrepresented. I only first heard of cluster headaches once my partner started getting them. Because of the lack of awareness of the severity of the illness, it's very challenging for people diagnosed with cluster headaches to be approved for Social Security disability benefits. Although challenging, (and frustrating), it is possible.
Every disability approved by the Social Security Administration (SSA) needs to last for at least 12 months, or be terminal. The majority (around 90%) of cluster headaches come in "cycles" for sufferers, meaning you can go months or even years without an attack. This limitation is yet another hurdle people with cluster headaches to overcome. If your cluster headaches are not chronic, you will almost certainly not qualify for Social Security disability benefits.
If, your cluster headaches are chronic and you're constantly plagued by the pain, you have a chance of qualifying for disability benefits.
Every time the SSA receives an application for disability benefits, it will compare your medical records to its own medical guide known as the Blue Book. The Blue Book lists hundreds of disabilities that can potentially medically qualify for benefits, and the exact test results or symptoms you'll need to be approved.
Cluster headaches are not listed in the Blue Book, which is why it's so hard for you to be approved. There are two ways you could be approved for disability benefits if your disability is not listed: Meeting another listing, or qualifying through a Medical Vocational Allowance.
The Blue-Book listed disability that you closest meet with Cluster Headaches is found under Section 11.00, Nonconvulsive Epilepsy.
Before you think "epilepsy, no way," consider the symptoms required to qualify. This Blue Book listing states that you must experience alteration of awareness or loss of consciousness and "manifestations of unconventional behavior," or significant interference with activity during the day.
Anyone who's had a cluster headache or has seen someone have one knows that it's impossible to do any normal activity until the headache subsides. In addition to the "alteration of awareness," your headaches must occur more than once weekly, and they must occur despite at least 3 months of prescribed treatment.
This means that if you are not receiving treatment from a doctor, you will not qualify under this listing, regardless of the severity of your headache. If you are receiving treatment, like using oxygen and taking various forms of medications (such as sumatriptan), but you still suffer from at least one cluster headache a week, you could medically qualify under the epilepsy listing.
The second way to qualify for Social Security benefits is by qualifying for what's called a Medical Vocational Allowance. This allowance is for claimants that do not qualify for disability benefits through the Blue Book, but clearly cannot work anyway. Your best bet of qualifying for a Medical Vocational Allowance is by having a doctor fill out a Residual Functional Capacity (RFC) evaluation on your behalf. An RFC is a questionnaire that helps the SSA see exactly how your cluster headaches affect your ability to work, from your ability to stand, walk, lift weight, and more. You can download an RFC for your doctor to fill out on your behalf online.
Qualifying for a Medical Vocational Allowance will be much easier for people who have dangerous and physical jobs that jeopardize themselves and others if a cluster headache strikes. For example, if an airplane pilot would more likely be approved than a software engineer who works at a flexible company, allowing him to stop working until the headache passes.
There are a few options available for you when you decide to apply for Social Security. If you've worked throughout your life you can most likely apply entirely online. If you've never worked or if you haven't worked recently–such as a young applicant or a parent who took time off to raise a child,–you will need to stop by your nearest SSA field office.
The most important component will be to submit every piece of medical evidence you've had. This includes statements from every doctor you've seen, all the medications or treatments you've tried, and exactly what types of activity you're limited to. There's no such thing as adding "too much" information onto your application.
All work history and tax information from the past 15 years. This will be used to determine how much you've worked, and how much you'll earn once approved.
Any medical records in your possession. The SSA can gather medical records itself, but if you can supply medical records, your claim will be quicker to process.
The personal information of your family members, such as your spouse and minor children. If you are approved, it's possible your dependents could also receive benefits. These are known as auxiliary benefits.
Information about your doctors, healthcare professionals, and hospitals and clinics where you've been treated. This includes everything from the phone number of your doctor to the patient ID numbers you have at each clinic.
All medical treatment history. If you can show you've received a variety of treatment for your chronic cluster headaches but still have not found relief, you will have a higher chance of qualifying than someone who has only tried one or two medications.
Statements from doctors. Actual written statements testifying to the severity of your cluster headaches and its interference with your ability to work will go a long way in your claim's approval.
Statements from family and friends. While the SSA will not weigh these statements as much as those from your medical professionals, these witness statements can still help your claim.
A complete list of what you'll need to apply can be found on the SSA's website, within its Adult Disability Starter Kit.
Unfortunately, the fact of the matter is that most people are denied benefits the first time around. In fact, only about 30% of applicants are approved initially. If your claim is denied, do not give up on applying for disability benefits. There is a lengthy appeals process available for you, and the majority of applicants are eventually approved after appealing their claims.
The first step of the appeals process is filing for reconsideration. This online form asks the SSA to look at your medical evidence again and revaluate your claim. The majority of reconsideration requests are still denied.
The second step of the appeals process is appealing in court and having an Administrative Law Judge (ALJ) review your claim. This is where most applicants are approved for benefits. In fact, nearly 50% of claimants are awarded benefits at their hearing. The reason for the higher approval rates is because you will be given the opportunity to plea your case in person. Many people have witnesses speak on their behalf during ALJ hearings.
If your disability hearing is denied, it is advisable to restart your application instead of continuing the appeals process. You cannot supplement your appeal with any additional medical information after an ALJ hearing, which makes later appeals nearly impossible to win.
The application process may feel overwhelming at times, but do not give up! If you are able to submit the medical records proving how severely your cluster headaches affect your life, and you know you will not see relief for at least 12 months, you may be financial assistance your family needs.