Epilepsy Talk

Social Security Claims — Winning Secrets | August 11, 2011

It’s no secret that winning a claim for Social Security Benefits based on seizure activities is almost like trying to pull a rabbit out of a hat.

To be approved for benefits based upon epilepsy or other neurological conditions, the following two criteria are key…

You must have a specified number of attacks, or episodes, occurring within a specified period of time. And, the episodes must occur even with — or despite — your full compliance with prescribed meds.

In other words, it is not enough that a disability claimant can demonstrate proof of a seizure disorder, or epilepsy diagnosis. Your records must also indicate that anti-seizure medication has been prescribed, is being taken as directed, and that attacks continue to occur nonetheless.

Then there’s the question of frequency and severity…

If your seizures are classified as “convulsive epilepsy” (formerly known as grand mal seizures), the seizures must occur more frequently than once a month.

If these seizures happen during the day, there must be proof of loss of consciousness (and, of course, convulsions).

If they occur at night, they must have the effect of interfering with your activities on the following day.

If your seizures are classified as non-convulsive epilepsy (“petit mal seizures,” or focal seizures), they have to happen more often than once a week.

And if that’s not enough, non-convulsive seizures must also involve either loss of consciousness, alteration of awareness (confusion, disorientation, etc.) or interference with your daily activities.

Here’s also some words for the wise, if you’re making a social security claim due to epilepsy or a seizure disorder…

Try to be seen by a physician when seizures occur.

Seizure disorder cases are evaluated by the SSA on the basis of how often seizures occur. That means you need corroborating evidence or else there’s no proof. Whether it’s documentation from a hospital, your doctor or some other health professional, there must be PROOF.

Keep a daily diary of seizure episodes.

This is for your good as well as further evidence of your seizure activity. Although a daily seizure diary can’t replace a doctor’s records, it’s still further proof of your condition and can be reviewed by a disability examiner or administrative law judge, adding further credibility to your claim.

Keep friends and family up to date with your condition.

Disability examiners often contact claimants to question their ability to perform normal daily activities. They sometimes also make calls to your friends and relatives to justify – or deny – a claim. If they can document what they’ve seen (even take video tapes!) their impartial and honest observations may better your chances of your claim being approved. (I think inability to breath might be a show-stopper!)

Take your meds – religiously.

Disability Examiners and Judges review medical records for prescriptions and compliance. The prescriptions themselves may validate the severity of a medical impairment. But when records show that the prescriptions have been written and not continued (like not being refilled is one big clue) the question arises, would you be able to work if you were regularly taking your meds?

14 tips for winning your SSD or SSI case…

Tip 1. Take everything you are told about your Social Security Disability claim with at least one grain of salt. http://www.disabilitysecrets.com/tip1.html

When in doubt, you should not hesitate to ask the same question again, or refer the same question to a different worker at the Social Security office, or to the individual providing representation for the SSD or SSI claim.

Tip 2: Get copies of your medical records and supply these with your SSD or SSI disability application. http://www.disabilitysecrets.com/tip2.html

By getting and submitting the records yourself when you apply or appeal, (or having your attorney or representative do this for you), you can ensure that all of your records are evaluated, and not left on the shelf for months, waiting to be evaluated.

Tip 3: Respond to letters and notices regarding you disability case promptly– from Social Security, DDS, or your attorney.  http://www.disabilitysecrets.com/tip3.html

When a claimant fails to respond immediately to letters and notices sent by any office connected to the Social Security Administration, they risk putting their social security disability claim in jeopardy.

Tip 4: The rule of three always applies — for those who are applying for benefits or appealing a denial.  http://www.disabilitysecrets.com/tip4.html

If DDS, the Office of Hearings & Appeals, or the Social Security Office ever state that a decision or disability case-related event will occur by a certain date, you can bet that it probably won’t. In fact, it may take three times as long as they say it will.

Tip 5: If you are denied for Social Security Disability or SSI, you will need to file an appeal. http://www.disabilitysecrets.com/tip5.html

This is a huge mistake. Filing out another disability application will only mean that your Social Security Case (SSD or SSI) will be denied again. And, by doing so, you will give up your appeal rights.

Tip 6: Call DDS for updates on your SSD or SSI claim, not the local Social Security office. http://www.disabilitysecrets.com/tip6.html

In most cases, it’s useless to contact Social Security for status updates on a Social Security Disability or SSI claim because they simply won’t know the answers to your questions, because DDS hasn’t finished the medical evaluation.

Tip 7: Representation will increase your chance of winning Social Security Disability or SSI benefits. http://www.disabilitysecrets.com/tip7.html

If a hearing is the next step on your case, make sure you have a representative — either an attorney who specializes in SSD and SSI claims, or a skilled non attorney representative (many of whom are former DDS examiners and social security claims representatives.)

Tip 8: If you have dire financial problems and have a Disability case, let people know.  http://www.disabilitysecrets.com/tip8.html

Submitting a “dire need” letter to expedite your SSD or SSI case isn’t a guarantee that your case will take priority. But even if a dire need letter only shaves a few months off the total time needed to get a hearing date, it’s worth the effort. And always keep a copy of the letter. I would also suggest you get a return receipt request from the post office. It doesn’t cost much, but it’s worth the proof that your letter has been received.

Tip 9: If you have representation on a Social Security Disability or SSI disability case, keep your attorney or non attorney representative fully informed.  http://www.disabilitysecrets.com/tip9.html

If a disability representative is working on your SSDI or SSI case, always keep them updated on what’s happening with your situation, medically or otherwise. And if your doctor gives you a new diagnosis, or tells you that your condition is getting worse, let your representative know this ASAP, since this information could assist, or even win your disability case.

Tip 10: If you have child support obligations which you cannot fulfill, ask your attorney or representative to help. http://www.disabilitysecrets.com/tip10.html

Claimants with child support obligations can have a representative submit letters on their behalf to a Child Support Enforcement Case Worker, or to a Judge. In most instances, while a disability case is pending, statements like this can keep your non-support status from resulting in incarceration, or other penalties.

Tip 11: Contact your Congressman or Senator to help you with your Social Security Disability or SSI claim.  http://www.disabilitysecrets.com/tip11.html

By contacting a Congressman or Senator’s office, a Congressional Inquiry can be made into why a particular SSD or SSI case is taking so long. A simple phone call or letter on your part will encourage an officer’s staff members and sometimes, they can speed a disability hearing, or resolve a problem on your disability claim.

Tip 12: If you have been approved for Social Security Disability or SSI, you will receive… http://www.disabilitysecrets.com/tip12.html

A monthly benefit amount determined by the Social Security Office, plus a certain amount in past due benefits, based on how long it has taken for your case to be resolved and when your disability actually began. Those whose benefits derive from SSI, may (depending on the state they live in) receive Medicaid. Those whose benefits derive from the Social Security Program (also referred to as Title II and Retirement Survivors Disability Insurance) will receive Medicare.

Tip 13: Get your doctor to write a supporting statement for your Social Security Disability or SSI case. http://www.disabilitysecrets.com/tip13.html

Social Security Disability examiners and judges who hear disability claims are not interested in short statements from personal physicians. If a doctor states that you can’t return to work, or be expected to find “other work” (this is how claimants are generally denied their benefits, by determining that they are capable of doing some type of other work), the doctor must state why you are unable to work.

Tip 14: Make sure your doctor REALLY DOES support your SSD or SSI disability case. http://www.disabilitysecrets.com/tip14.html

It may be that the doctor does not consider you disabled at all, regardless of whatever statements they have made to the contrary (though it is distressing to hear, doctors will often say one thing to a claimant’s face and “say” something else in their medical records). Or the doc may just not have the time in his busy practice to go through all of the considerable paperwork involved in your Social Security Disability or SSI case. However, in some instances, a brief conversation with your doctor may settle the issue quickly. The personal documented review of your own medical records will inform the doctor of the extent to which your will be helpful…or not.

On this website, you’ll find out about Social Security Disability Topics http://www.disabilitysecrets.com/resources/social-security-disability Types and Definitions of Disabilities http://www.disabilitysecrets.com/resources/disability Disability Issues http://www.disabilitysecrets.com/resources/disability/about-disability Disability Resources http://www.disabilitysecrets.com/resources/disability Workers Compensation http://www.disabilitysecrets.com/resources/workers-compensation Survivor’s Benefits http://www.socialsecurity.gov/survivorplan/ifyou.htm Social Security Basics http://www.disabilitysecrets.com/resources/social-security-disability/social-security-basics Filing for Social Security http://www.disabilitysecrets.com/resources/social-security-disability/filing-for-social-security plus a wealth of other helpful information.

And this is just the tip of the iceberg!

To read more, go to http://www.disabilitysecrets.com/ and click on the appropriate subjects…

To subscribe to Epilepsytalk.com and get the latest articles by email, simply go to the bottom box of the right column and click on “Sign me up!”





  1. A few things I found out.

    1. If you are a parent of a child w/ Epilepsy/Seizure Disorder you Must file B4 they are 19. If You, Yourself, file after 19, you will not receive payment for Previous ‘episodes’. (Maybe a Lawyer can help w/ that. ????)

    2. If married, your claim can be Denied due to too many Assets or based on Hubby’s Income/Insurance/ Benefits. 1 house & 1 car is the Limit for Assets! And $2000 a mth, Annual Income is the Cut-off. (Again, possibly a Lawyer can help)

    3. If you don’t have enough Work Credits, SSI can be denied. But, you are still able to file for Disability.

    4. It can take a yr or 2. Be Patient. Be Persistent!



    Comment by candi — August 11, 2011 @ 4:04 PM

    • Thanks Candi for the added info. Brilliant and needed, as always.

      You always have a way of stepping into the fray!


      Comment by Phylis Feiner Johnson — August 11, 2011 @ 9:12 PM

    • Applying for or Appealing a Social Security Disability Case can be very challenging. It was very challenging for me, especially the first time my application was denied and I had to file an appeal. I completed an online Social Security Disability Appeal form and submitted it. Little did I know that it would take up to two to three years to even get a court date scheduled. I said to myself, “I can’t wait two to three years just for a court date because by then I will be homeless with no money, no food, and lose everything I ever owned.” Also, going back to work was out of the question because I was not physically or mentally ready to return and would eventually get terminated from a job.

      So I started doing intensive internet research for nine months to find a way to get my Social Security Disability Appeal Case approved without waiting two to three years for court date to be scheduled. I utilized the information I found and won my Social Security Disability Appeal on my own without a court date. I did not have an attorney because I did not want to lose 25% of my back pay to attorney fees and I wanted to decide my own fate. After going through the whole process, that’s when I decided to write this book to explain in detail what documents and tests you need to try to win your Social Security Disability case the first time around or appeal without a court date.

      I do not want anyone to go through what I experienced in trying to get approved for my Social Security Disability for a whole year. It is hard for someone to get approved when they do not know what to do or what documents and tests you may need in order to prove you are indeed disabled.

      This information really helped me get approved for a Social Security Disability Appeal without a scheduled court date. I recommend that you download “How To Win Your Social Security Disability Without An Attorney” so you can start utilizing this information for your Social Security Disability Appeal or the first time you apply.
      If this information was available when I was trying to win my Social Security Disability Appeal, I would have ordered it. But during my nine months of research, I couldn’t find anything like this book out there on the internet. Please take advantage of this information because it takes you step-by-step through how to get your case reviewed without a court hearing and how you first apply for Social Security Disability. This will be the best money you ever spend on a self-help book.

      I created this website to help people better understand the Social Security Disability process. I have also written a book called “How To Win Your Social Security Disability Without An Attorney.” Download this book for $19.99, which is a special limited time offer. Do yourself a favor and purchase this book so you can start trying to get approved for a Social Security Disability Appeal or the first time you apply for Social Security Disability Benefits. To download book click on http://www.socialsecuritydisabilityandyou.com At the bottom of the webpage click on the Shopping Cart Tab to purchase the book “How To Win Your Social Security Disability Without An Attorney.”

      Please click SHOP on the upper right side of the website to place order.

      Good Luck


      Comment by Linda Green — November 26, 2015 @ 1:01 AM

      • Linda, Thanks for taking lemons and turning them into lemonade.

        Maybe, if people are clued in by your book, they won’t have to go through the various trials and indignities that everyone seems to experience.

        Your website is great. And I’m sure the book is even better.


        Comment by Phylis Feiner Johnson — November 26, 2015 @ 9:25 AM

  2. Hi Phylis – just received a not form you telling me for benefit for epilepsy… I have recently done a simular page on my site for UK members and helps those who want FREE medication and links to UK Benefit pages:




    Comment by Stephen — August 11, 2011 @ 4:35 PM

    • Wow Stephen, this is priceless! Mind if I rip you off on both? (I’ll put you as the resource. Or would you prefer just a brief intro and a direct link?)

      THANK YOU!!!


      Comment by Phylis Feiner Johnson — August 11, 2011 @ 9:18 PM

  3. Tip 5: If you are denied for Social Security Disability or SSI, you will need to file an appeal. http://www.disabilitysecrets.com/tip5.html

    This is a huge mistake. Filing out another disability application will only mean that your Social Security Case (SSD or SSI) will be denied again. And, by doing so, you will give up your appeal rights.

    So, HAVING your “appeal rights” is more important than USING them?….this makes no sense at all.


    Comment by mkfarnam — August 11, 2011 @ 4:45 PM

  4. “Here’s something that SSA doesn’t tell you”

    I found out by a SSDI Rep, during an evaluation several years ago, that once your approved, you can, not only receive SSDI but draw from your parent(s) SSI at the same time. It all goes into one check. That’s what I’ve been doing for the last 8 years.


    Comment by mkfarnam — August 11, 2011 @ 5:15 PM

  5. Correction:………………………………
    It’s called “Survivors Benefits”


    Comment by mkfarnam — August 11, 2011 @ 5:23 PM

  6. […] PhylisFeinerJohnson CWE Benefactor Recent Blog: Secrets to Winning Your Social Security Claim […]


    Pingback by [Info] Secrets to Winning Your Social Security Claim - Epilepsy Forum — August 12, 2011 @ 2:40 PM

  7. Thanks Guy’s, I learn so much from you all. I hope to share some it with people I meet who are being jerked around by the “system”.


    Comment by Charlie — August 14, 2011 @ 1:08 PM

  8. You’ll teach them and show them. I know you.


    Comment by Phylis Feiner Johnson — August 14, 2011 @ 3:00 PM

  9. Thank you for your help..after my second time around I just got ssd. See on the Epilepsy boards.

    Liked by 1 person

    Comment by stephanie — November 28, 2011 @ 4:46 AM

    • btw..first time I had a lawyer..and was denied all the way up to the judge. this time 3 months later I did on my own with your help, and I got it! I may not get back pay, but I have the peace of mind I am not in insain..lol


      Comment by stephanie — November 28, 2011 @ 4:51 AM

  10. Way to go Stephanie!!!!..feel free to ask any questions…..
    I know it’s a pain. But once your on, your on.
    Once I was on, evaluators were always telling me about better plans/programs I could be on as a disabled person.

    I remember as a young boy, when my Mother was hauling me around from dr, to dr, on a daily basis for about 6 mo’s. I guess she was getting me approved with SS. Because yr’s later when I signed up for SSDI,
    my first check was retro active back to when I was first signed up.


    Comment by mkfarnam — November 28, 2011 @ 3:24 PM

  11. Well, I guess there’s a silver lining in every cloud.


    Comment by Phylis Feiner Johnson — November 28, 2011 @ 4:03 PM

    • That’s all you have to say???????lol

      Come-on Boss Lady……………we could use some more words of encouragment here…..lol


      Comment by mkfarnam — November 28, 2011 @ 4:09 PM

  12. i need help for my sister or she will lose her house her husband died last year and she has been having granmal seizuier keeps getting denied by ssi i need number and help for her . she isn’t working and the med’s are not helping her at all can you help 412-277-0776
    her loving sister


    Comment by theresa venanzio — January 28, 2012 @ 6:42 PM

  13. Well, you can start with the links above or call your local Social Security office and ask them for help and guidance. (I think I would do that first.)


    Comment by Phylis Feiner Johnson — January 28, 2012 @ 11:39 PM

  14. I NO I should have expected this. Every1 told me U R denied 1st time. I was. I filed the appeal myself after 1st denial, explained I could have been getting SSI since the brain tumor / seizures occurred 14 years ago, but I didn’t file as I had pre-seizure warning signs, could still drive & LOVE working. Even 2 jobs when we didn’t need the money. I’m that hyper & productive. Now that I no longer have my pre-seizure warning, I can’t even drive, or use the tractor, or cook when alone. So I filed for the SS that I’ve paid into. I got this 2nd denial 2 my appeal N the mail 2nite. (PS on the appeal, every other ? they asked was-do u have an atty? – there’s the 1st sign (Mind u I’ve paid in2 SS 4 over30+ years- (Money that the govt has already spent) But the verbiage in the appeal denial is SO effin asinine, my head is about to effin explode. Here’s the exact verbiage of the appeal denial: YOU STATE THAT YOU ARE DISABLED DUE TO SEIZURES. THE EVIDENCE SHOWS THAT YOU DO HAVE THESE RESTRICTIONS WHICH PREVENT YOU FROM PERFORMING YOUR PAST WORK. HOWEVER RESTRICTIONS DO NOT PRECLUDE YOU FROM PERFORMING THE TYPE OF WORK AS IT IS NORMALLY PERFORMED IN THE NATIONAL ECONOMY. Seriously, the national economy – as it is now??? The one that the govt has tanked, that a large group of able bodied – non-seizure people can’t even work in? OMG I am so mad I can’t even re-read this anymore. All I can say is they were so worried about me having an attorney. Well I WILL have an atty by 10 am 2moro. But that is something they shouldn’t be so worried about. What they should be concerned about is the Cajun tornado that even most of the USA has never viewed before. EVER. HOW DARE THEY. If I had never worked and was having babies out the wazoo, I’d be getting checks out of my ears, each time it would increase, the more babies, the more money. They aren’t even taking into consideration all the money Hubby and I earned for them in taxes on all the salary, high earning taxed dollars, taxes on items bought, taxes on our successful business, have never been ON the system & now that we need some of our PAID money to them back for an out of control medical DISABILITY they have the nads to state that I should be able to function with seizures in the NATIONAL ECONOMY that doesn’t exist because they tanked it???????????? They shouldn’t be afraid of me having an atty, they should be afraid of how far and wide I will publicize this. I will devote EVERY SINGLE SECOND OF EVERY SINGLE moment that I will have on this. I’m so stunned by this that I can’t even breathe properly. To them I should have applied at the first diagnosis. But no, I worked through it when I had warning signs. Now I know what I’m up against. And they will soon be finding out what / who they are up against. Tired of people being cattle and following these SOB’s these self serving greedy politicos that haven’t even met me yet. But they will. And they don’t know my stamina. So FUCKING pissed I can’t see straight. Not going to mention this to Hubby as he is stressed enough. We are losing our farm due to these greedy bastards and their friends tanking our economy and costing us our businesses, Since we are moving into a tee-niney house, I’ll have nothing but time. I will not be cattle, as they are not leading. No threats here on my part. Only promises. American will be run by Americans, of the people, by the people, for the people. I will ensure to bring that back into my world. Not for, by and of the politicians lining their pockets and those of their cronies. I may have uncontrollable seizures, but I do have time as I am UN-HIRE-ABLE in what they refer to as THE NATIONAL ECONOMY. God forgive me for my words, thoughts and anger. But I’ve had enough. Will no longer tolerate this Governmental BS. I begin tomorrow, not with violence but with an anger and an unstoppable voice.


    Comment by Pissed American — August 13, 2012 @ 11:49 PM

    • Dear Pissed,

      First of all, here’s a link to FREE Legal Resources which I hope will help.


      Ideas: Start with the EEOC until they either beg for mercy or help you. I think Constance S. Barker is still the Commissioner. I would suggest a snail mail letter, since many unidentified emails go into “spam”. Her contact address is 131 M Street, N.E. — 6th Floor Washington D.C. 20507 Telephone: 202-663-4027 Fax: 202-663-7121 Email: constance.barker@eeoc.gov.

      I would smail mail first, then fax and then call.

      Secondly, do you think you could set aside your anger and use your unstoppable voice to PUBLICIZE this? I’m talking about in OP-Ed sections of newspapers. Find out the editor’s names of the Op-Ed section and departments like Government Affairs (each newspaper, has it’s own language for departments) and tell them your story.

      Go to your local paper. Your regional paper. Your city paper. NPR. Call Larry King. 60 Minutes. TV sources like that. (I’m sorry, I don’t watch TV, so I don’t know the programs. But, you’ll want the non-conservative ones. Certainly not Rush Limbaugh!)

      This is the year of Social Security conflicts. Campaigners are running on that platform. Your timing could be perfect.

      Maybe you should also try your local legislators. This link will take you to your Elected Officials:


      Simply fill in your zip code and state.

      For a Congressional Directory, go to:


      At least, it’s a start…


      Comment by Phylis Feiner Johnson — August 14, 2012 @ 10:34 AM

  15. my girlfriend lives in Brazil to wide like to go live in Brazil and we would like to get married and because I have epilepsy I can’t earn £22000 a year so she cannot live in this country they say if I leave this country I can’t have my medication so is there anything you know that can help me please


    Comment by Colt505 — July 14, 2015 @ 2:04 PM

  16. I sure do wish I could help you. 😦


    Comment by Phylis Feiner Johnson — July 14, 2015 @ 3:31 PM

  17. My dad has been having problems with his social security disability claim and I wanted to look into it. Thank you for talking about the importance of making copies of your medical and other documents regarding this claim. I can see that doing this can help you make sure you have proof of what it going on even if your filed documents get misplaced or lost. It pays off to remember that having a good disability attorney on your side can make this process less stressful.


    Comment by John Mahoney — May 18, 2017 @ 5:09 PM

    • You’re right, John. A good lawyer is invaluable to steer you through the shoals.

      After all, someone has got to be on YOUR side!


      Comment by Phylis Feiner Johnson — May 18, 2017 @ 5:19 PM

  18. I was diagnosed at 6 months of age with Convulsively Epilepsy. Have Seizure activity still in the Brain waves. After not having Seizures since childhood. They came back about 1 and half ago. Two within 6 months. I had to lower my work hours per week due to The florescent lightning in office and the long hours of sitting in front of computer at work. Having alot of Migraines due to the lighting and long time sitting. Certain things that bother my seizures are back and having seizures again. I have high blood pressure Migraines and Seizures I’ve been denied 2 now for SSI. Once about 2 yrs ago and the other in my late 20s early 30s and two in my 50s.


    Comment by Sheila R Riecke — May 29, 2017 @ 2:01 PM

    • As for SSI, I would suggest a lawyer.

      FREE Legal Resources


      And concerning your migraines: Research shows that Depacon (Valproate) and Topamax (Topiramate) are effective in treating migraines
      and epilepsy.

      And each has FDA approval for treating them together. Depakote (Divalproex Sodium) also works for both, creating a therapeutic “two-fer.”

      There are also several other anti-epileptic drugs that have also been shown to lessen migraine headaches – such as Neurontin (Gabapentin), Keppra ( Levetiracetam) and Zonegran (Zonisamide).

      I hope this helps.


      Comment by Phylis Feiner Johnson — May 29, 2017 @ 3:06 PM

  19. Epilepsy Foundation A Joke! EEOC A Joke! Epilepsy Foundation referred my so to Oklahoma Disability Law Center who should be investigated as to what that actually do, after months of badgering them for someone to listen to his discrimination disability due to his Epilepsy and finally filing complaint with Bar Association I am the bad person, and they could not help him! Then foundation gave couple names of lawyers who didn’t even return calls! This foundation in my City is worthless when called them someone was suppose to call back never did! So all these thank u’s to Epilepsy Foundation are just bull! I never hear what this group does to bring more awareness about this disability, he has already been stripped of “normal life” and the foundation screwed with him! These little bits of info Phyllis you write, if u wanted to be of help why aren’t you contacting Senators, Congress, not everyone has the luck u have had, in fact its more people just give up because no one stands up and says enough is enough instead of complaining about not enough funding DO SOMETHING! Instead of TIPS for getting Social Security DO SOMETHING! This foundation just feeds us candy when it is up to them get it together do something for God’s Sake! I will be first to sign up I am writing my Senator Now what are doing!


    Comment by Glenda Bowen — July 16, 2019 @ 2:27 PM

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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