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Migraine and Disability

  • By chebbot

    Hi, I’m Chelsea, long time lurker. I read some of the articles on disability, and I’m sure there are forum posts somewhere, but I figured I’d get this all out there. Any personal experience or advice on ANYTHING would be great.

    I’ve been getting migraines since I was 11 and will be 24 soon. I had tension headaches a lot but didn’t get migraines very often. They got much more frequent when I got older, but it really started when I got mono senior year of high school. I had it for about a month, felt better, went back to school and then got sick again. I got a headache that wouldn’t go away, and suddenly started getting migraines near daily.

    So that’s when I started the process of seeing docs, countless meds, ER trips etc…And I never had to worry about insurance. My dad works for the state, and I’m on his plan. They cover nearly every thing, even the botox for the past few years (though that took quite a battle.) I consider myself very lucky in that department.

    The problem is, when I’m 26, I’m cut off. My ‘plan’ was to have a career and my own insurance by now. I did one year away at college, couldn’t keep up so went part time at the local community college while I focused on getting better — physically and mentally. The plan was always to go back and get a bachelors. I maxed out on credits at the CC in 2011, and I’ve yet to go back.

    Even if I could (I can’t get financial aid until I pay 9 months of my student loans) I don’t think I could handle a full course load. And I definitely couldn’t handle that and part time work. And I would have to work to continue paying off my loans, or I wouldn’t get fin aid. So it’s this big cycle that I can’t handle. I struggle with 15-20 hours a week, making $9 an hour at a daycare. Every day I get closer to 26, I get more stressed out.

    I kept altering my “plan” but I’m starting to try to accept it might not happen. And even if I did finish school, get a career with good insurance in time, I think full time of any job would be stretch me too thin, maybe in half.

    When I was 18, I thought I’d be ‘cured’ by now. Or at least mostly functional. My boyfriend is all about me trying, and thinks I’m being negative and worrying about this too soon. I know he’s trying to be positive and helpful. But I’m trying to be realistic. I know disability is a long process, and if it’s not taken care of by my 26th birthday I’ll be in serious trouble. I think if I have some of you agree with me, he’ll understand better.

    So this is a really long post to basically ask, can I get disability for migraines? I’ve been treated for depression/bipolar/anxiety since I was 14, and while its relatively under control now, it has also been disabling at times. Has anyone had any success? Where do I start? I live with my boyfriend and he takes care of nearly everything, but without insurance, I’m doomed. I have a very low income, and currently have medicaid as a secondary. I still want to work a little. It’s stressful, but it helps me stay on a schedule, feel somewhat like a normal person, and I need to have my own money. But because I CAN work a little, am I not ‘sick’ enough to qualify? Are there other ways to get insurance coverage?

    I know other people don’t think I’m ‘sick’ enough for disability. Some times I don’t think I am, and even the medicaid makes me feel like I’m “abusing the system.” But if I do push myself to work full time, I won’t have a life outside of that. It would be detrimental to my health, and I wouldn’t have time for doctors appointments and treatments. I barely do now. I’m not being negative, I’m just trying to do what’s best for my body.

    Sorry for the long post, it’s even giving me a migraine. I just really need to feel like I’m not alone, that this is normal and okay for someone in my situation. Thank you.

    -Chelsea

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  • By The Migraine Girl Moderator

    Chelsea (chebbot),

    Your post was so well-written and moving–every time you share your story, there is a reader out there (even if he or she is a lurker) whose life you’re touching. Thank you.

    We have a lot of information about migraine and disability on the site. I know you’ve done some research already, but I thought it’d be easiest for me to send you a few links.

    1. Link to a general search for the term “disability” on the site: https://migraine.com/?s=disability&submit=Go
    2. Some specific articles you may find useful:
    https://migraine.com/blog/can-you-receive-disability-benefits-if-you-have-migraine-disease/
    https://migraine.com/blog/social-security-disability-insurance-benefits-the-basics/
    https://migraine.com/blog/disability-income-preparation-guide/

    Take care. There is hope!

    Thinking of you,
    Janet G.
    “The Migraine Girl”

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    • By chebbot

      Thank you. I wish I had found this website sooner. I knew I wasn’t alone, but seeing that I have the support of other people who genuinely understand is invaluable. You are all so kind 🙂

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  • By Jules2dl

    Dear Chelsea;
    I’ve been getting migraines since I was 11 as well, and despite being an A student, let me tell you, you are way ahead of the class! It took me until I was 53 to consider SS Disability.
    My best advice is, unless you have a person in your life who is capable of and willing to handle all of the confusing mountains of paper work applying for disability entails, hire a disability attorney. I went with Binder and Binder, the guys on TV. I am so glad I did. There’s still a lot of paper work to fill out, but at least you don’t have to figure out who what where when and why. They tell you exactly what to do, and you mail everything back to them. They deal with SS for you.
    It took me a little over 2 years for me to get benefits because I once worked for 6 months doing phone sales, and SS said I could still do that type of work. After being turned down twice, my case went to hearing. I had a #10 migraine that day and sat there with an ice pack. The judge asked if I’d be more comfortable if the lights were dimmed and I said yes. The SS job specialist at the hearing still said I could do phone sales. The written testimony from my doctor and from the SS doctor at the hearing was that I would miss 4 or more days per month due to severe migraines, and that my functional ability would be reduced on the days I did work due to less severe migraines as well as migraine meds. I got my award 3 weeks later, thank the Lord.
    Chelsea, it IS possible to get disability due to your migraines. It MAY take longer than you think. DON’T get discouraged. It IS worth the wait. Most of all, YOU CAN DO THIS!!!!
    Best of luck~
    Julie

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  • By Katie M. Golden Moderator

    Chelsea,
    Janet gave you some great links to learn about your income options during disability But I thought i would share with you my personal experience. I applied in Feb of this year and just got approved. I was lucky it only took 5 months.

    You are not worrying too soon about this issue. It can take years to get approved for social security disability.If you apply, you should consult an attorney or use an agency to help guide you through the process. It can be very cumbersome and doing it on your own can make the process take longer. I used a company called the Advocator Group (http://www.advocator.com/). They don’t get paid unless your claim is awarded. They were super helpful.

    Once approved, you can typically make between $700 and $1,000 a month without your benefits changing. If you decide you can work more hours, they give you a 9 month grace period to work without cutting off your benefits. So if you start working and then 2 months later realize you can’t do it, you don’t have to go through the application process all over again. But if you can work, either your benefits will be reduced or maybe discontinued depending on how muoh you work.

    Here’s something that will probably be of interest to you: If you get awarded SSDI benefits, you can apply to have your student loans forgiven! I am currently in this process.However if any time in the future you are able to go back to school, I do believe you would then have to pay back your past loans. Here’s information from the company that handles these claims for the Dept of Education:
    http://www.disabilitydischarge.com/home/

    Also if you are approved, then 2 years later you are eligible for Medicaid benefits, which would help you since you may not have insurance.

    And the governmetn webiste is very helpful too. http://www.ssa.gov/disability/

    I know that your life plan was not to need help from the government. You may have people who don’t understand. But these benefits are available for a reason and it would be a mistake to not find out if you can qualify. In the end, you have to take care of yourself. This could be a long and tedious process. Sometimes it felt like my full-time job, but since getting approved, it has been a huge weight off my shoulders.

    Let me know if you have any other questions. I’d be happy to help!
    -Katie

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  • By Jules2dl

    I forgot to add~ Binder and Binder only get paid if you get your benefits, and they take their share out of your back pay award. The only bills you will have to pay during the process are minimal bills for medical records. After you are on disability, you are automatically eligible for medicare, although you might have to pay for a prescription plan. If you’re 24 now, it’s possible that you might be able to complete the application process by the time you’re 26 if you start right away.
    I know how frightening it is to have migraines and not to have medical insurance. In fact, I know how frightening it is to have migraines and 4 kids and no medical insurance. I’d say a prayer every time 1 of them went out with a bicycle or a skate board. Or I’d agonize over whether or not to use an Imitrex injection (this was when it just came out and was only available as an injection…the long-awaited miracle migraine med!) because they were so costly.
    You’re in my prayers,
    Julie

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  • By Rockin mama

    If you qualify for Medicaid now as secondary, it will become your primary insurance when you turn 26 provided you continue to meet all eligibility requirements. In most states, you can qualify for Medicaid during the two year waiting period before Medicare kicks in.
    I’m in the process of trying to get my migraines under control … I’ve had them since I was a teenager. I’m seeing a neurologist, trying to make positive lifestyle changes, and keeping a migraine diary. I’ve decided that if I’m not markedly better in a year (when I turn 50), then I’m going to apply for disability. My migraines have gone chronic in the last couple of years. I have intermittent FMLA approved for my migraines, but I’m getting low on paid leave. I hope I can get better … I really don’t want to be disabled.

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  • By Star71

    I’m sitting here reading this and crying…
    Knowing that at 43, there might finally be hope for me…
    I am a chronic daily migraine sufferer…
    I take 400mg of Topomax a day and I also have Spina Bifida Oculta and I’m not being tested for MS…

    As for applying for the Disability will the records need to come from just my doctor now? Or do I need to get records from my doctor who first started treating me?
    I too can only work a few hours at a time, work under the fluorescent lights kills me day in and day out… I swear they are evil… UGH!!!

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  • By Katie M. Golden Moderator

    Star71,
    You can start with getting records from your current doctor, but if you feel there was another doctor in the past that agreed you are not able to work full-time, get those records too. Kill them with details up front. I know it seems like a lot to do, but think about getting help. Again, the Advocator Group did so much of the legwork for me, it was so helpful.
    -Katie

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