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Living with Migraine

filing for SS disability

  • By Mariaici

    Has anyone filed for SSD disability lately for migraines? How long until you got a decision?
    I am pretty upset that I had to come to this point, but my migraines aren’t being controlled.

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  • By Mariaici

    Has anyone filed for SSD disability lately for migraines? How long until you got a decision?
    I am pretty upset that I had to come to this point, but my migraines aren’t being controlled.

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  • By Nancy Harris Bonk Moderator

    Hi Mariaici,

    Thank you for your question and being part of the Migraine.com discussion forum – we’re happy you’re here!

    I’m sorry you are having a rough time. Migraine can be debilitating, exhausting and frustrating. I was approved for SSDI in 2009. The first time I applied I did it by myself and was promptly denied. I was approved with the help of my lawyer. We have information on SSDI in this section that may be helpful; https://migraine.com/migraine-basics/social-security-disability-insurance-benefits/.

    If you haven’t had a chance to see a “true” migraine/headache expert, I would encourage you to do so. These doctors are board certified in headache medicine, which is different than being certified in neurology. Neurologists may be fine doctors but have a hard time being experts in one area because they treat so many different disorders such as stroke, epilepsy, multiple sclerosis, Parkinson’s and others. Migraine/headache experts are just that, experts in one area – migraine and headache. When you get a moment take a look at this information on how these doctors are different and how to find one; http://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/really-find-headache-specialist/.

    I hope this helps,
    Nancy

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  • By Mariaici

    Hi Nancy,
    Thanks for your support!
    Do you recall how long it took for SSDI to make a decision?
    I will read the the articles you referred to.

    Thanks,
    Maria

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  • By MarkF

    Hi Maria-
    I filed my initial request for disability March, 2016 and received my first denial July, 2016. I hired a disability lawyer in August, 2016 and am waiting for an appeal hearing to be scheduled. Good luck!

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  • By Mariaici

    Hi,
    Thanks for responding.
    I am getting very stressed because I don’t have any money coming in.
    But my daily migraines aren’t controlled so I can’t work.
    The stress is making me feel worse.

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  • By Lisaone

    I also applied for Ssi for chronic migraines and other issues but was denied twice. Now waiting for hearing with a judge, it’s been over a year wait and now Ssi wants me to fill out everything again. I just don’t have the energy. I can barely work. Little money coming in. I wish someone could do this paperwork for me.

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  • By Nancy Harris Bonk Moderator

    Hi Lisaone,

    I’m so sorry things are so difficult right now. I understand how exhausting this process is having gone through it myself. You may want to hire a lawyer who specialized in SSDI and gets paid when you do. We have information on that here; https://migraine.com/migraine-basics/chronic-migraines-and-applying-for-social-security-disability/.

    There is an organization that may be helpful in this are called Allsup. I don’t have any personal experience with it, but it couldn’t hurt to look into. Here is the website; https://www.allsup.com/about-ssdi/choosing-representation.

    I hope that helps, keep us posted.
    Nancy

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    • By Red2017

      Hi,

      As a former SSA employee and migraineur now also on disability, who had my application approved first shot, I have a few tips to share:

      – re: time frames, how long your case will take to process through each phase of the system will depend on what is called the “Disability Backlog”. This is always measured a in months for each case, but thankfully no longer in terms of the 1.5 years it used to take SSA to even start reviewing cases, particularly appeals.
      – Migraine is a hard diagnoses to have approved because it is not what SSA calls a “blue book” condition. Burden is on applicatant to show that migraine is “equivilant” to similar disabling conditions SSA does approve.
      – BUT if applicant can provide records proving that they are “completely and totally disabled from doing any job in the US economy and cannot in any way be rehabilitated to do so (they judge this b looking at your previous work history, age, etc combined with your medical information), THEN they will find for disability.

      WHAT they DON’T tell you:

      Page here makes point to give detail, this is true, but further, submit records. Go back further than them r two year window. I gave them 365 pages of 23 years of migraine visits, script records, migraine clinic visits, GP visits, GI visits, and ER visits. These I brought to the field offices to be scanned into the system. Call to confirm receipt.

      SSA has internal policy to always preference the patients doctors medical opinion. If SSA tries to send you to their medical doctor, for migraine for some reason they seem to like to send patients to psychiatrists for second opinions, if you have previously consulted one, feel free to get a more comprehensive report from your doctor, it will Almost always be better for you then what a SSA doctor will prepare after meeting you for 45 minutes on their dime.

      Also, if you have co-morbid conditions that affect you in any way, in my case it was chronic asthma, IBS (later diagnosed as Crohn’s), and hypothyroid it will help you to add documentation to that effect. Likewise should you suffer from the psychological effects of chronic illness as many of us do. Anything you can provide medical diagnosis codes and ideally doctor letters to substantiate or for past issues, just medical records showing diagnosis codes can help establish that you suffer from “compound induces”. When migraine alone is not enough for an approval, migraine with a secondary diagnosis may be easily approved.

      Finally, since this is a lot of work and we are often sick and exhausted, vs. all she I personally would recommend a local SSI or SSDI lawyer because a) they can only work on a contingency basis if they take your case – this is SSA law. They are paid up to 6000 out of your back payments when you receive that check (about 4-6 weeks after you are approved).

      This may be discouraging, but really, it is important to know you have rights, if you are overwhelmed, get a lawyer, it is absolutely possible to get SSDI for migraine with the support of your doctor, but do realize it is a process – local community resources may help you get through while you wait for approval – the waiting sucks but I hope I can give some help at beating them at their own red tape laden game 🙂

      it should not be that complex. And in fact, the process of completing the app is not. Best done by going online to SSA, completing online, then submitting your records in person to field, follow up early and often with both the field office and state DDS office to make sure they have what you need. If things seem really slow, occasionally your senator or congressman can give you some help. Remember you have a right to your own doctors, not theirs; and a lawyer paid essentially by SSA. Don’t let the process get you down. SSDI particularly is a right. An insurance program – you paid into it – you deserve to get the cash put when you need it.

      Just realize it may take some time and patience – good luck – Never, never’ ,never give up!

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