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A lifetime of migraine exacerbated

I have had migraine with aura and hemiplegic migraine since age 3. Of. Back then there weren’t distinctions and often migraine was headache sickness. There were no treatments either. The best anyone could do in the worst of it in my teens and young adulthood was take me to the hospital and get morphine to knock me out.

Then came Imitrex- hazah! It didn’t work all the time but it was the best treatment ever. I was generally functional, held a very high stress job working 12-14 hours a day and on all 24/7. I kept A LOT of ball in the air. I raised 4 children as a single mom at the same time- all in college now. Then came the Fall. I fell at work face first Feb. 21 2012, nearly a year and a half ago. I broke my sternum and had a serious concussion. I also had some pain and stiffness in my neck- nothing compared to the rest. The the migraines became chronic. The visits to the hospital by ambulance and once by flight for life because I was screaming in pain and it looked like stroke. It was Occipital Neuralgia with blackouts. 2:20am cluster headaches 2-3 months on 1 month off. I spend 20 days per month IN BED.

If I take Imitrex after the cluster headache, I can get up and about but I can only take it twice a week or I rebound. Workers Comp. decided all this is pre- existing because I’ve always had migraines. Benefits were stopped. I just got a letter from Social Security Disability stating that I have been denied- they believe I not only can work but I can do my pre ions job. So here I am – drivers license medically revoked because of the blackouts from Occipital Neuralgia- confirmed by UCLA neurology headache clinic- no job, unable to get out of bed and both workers comp and social security have denied benefits.

Thankfully I am now married and have insurance and a loving understanding husband to help take care of me. The co-pays on the insurance are more than we can pay since we’ve lost my substantial income and drained our bank accounts trying to get through all this. We have borrowed from family and friends as much as we can and now we’re facing a brick wall. We may lose our home, we can’t afford the co-pay for the next surgical procedure at UCLA. I’m at my wits end and don’t know how to fight all this. Has anyone been where I am before? Does anyone have Any advice?

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Comments

  • mmjardel author
    6 years ago

    I am so sorry you have all had to go through this and I am comforted to know I’m not alone. I have hired and SSDI attorney. Now we wait- 6 months in my state for reconsideration few are approved at this stage – then 9 months for the appeal date. I can’t understand what people are supposed to do while they wait. We are too sick to work but SSDI wants to see that we have moved forward with treatment. We want to go forward with treatment too. Where is the money supposed to come from? Even with insurance 20% of each procedure and high co-pays for the specialist. I think people in this situation are lucky to hold on to their house and put food on the table. I don’t know how to make the situation work. Only God know the way and I am leaning on that hard. Thanks for your support everyone.

  • Nancy Harris Bonk moderator
    6 years ago

    I can sympathize with you and your family. May I strongly suggest finding a lawyer who specialized in SSDI and working with him/her?

    Many times (but not always) the first application for SSDI is denied and it takes working with an attorney to get approval.

    We have some links I can share with you that may be helpful; http://migraine.com/migraine-basics/social-security-disability-insurance-benefits/.

    Good luck and let us know how it goes.

    Nancy

  • Rene'
    6 years ago

    Been there, lost job and house along with all savings and retirement. Things will get better. That’s all I can say. Contact an attorney that specializes in disability and look into yourself for something else to do with your life. As bad as my fall was, I now have a part-time job I love working for a magazine and I have a wonderful husband who understands and supports me. Never give up.

  • Chronic Mark
    6 years ago

    I agree with the other comments. I was turned down for SSA once before it was accepted and I was forwarned that it most likely would be turned down the first time. Get a lawyer or firm that specializes in SSA. Along with keeping copies of EVERYTHING I would recomend that you keep accurate records of your migraines. How strong, how long, how often etc. I was told because you can’t “see” a migraine on an mri or see the disability like other more physical disabilites that you need good backup. This also includes good records of the docs you’ve seen, procedures done, meds tried etc. Good luck.

  • kimmcclive-reed
    6 years ago

    Elaine is totally right. Most people are denied the first time, especially for migraine-related issues. I know you must be feeling completely frustrated, but just hang in there and appeal.
    Re: SSD attorneys, some will take cases and charge nothing if they lose, but take a pre-specified percentage (or set amount) of whatever you are awarded if they win. Your claim should be back-dated to an appropriate date. If you are approved, you’ll get future benefits, and hopefully you’ll also be awarded repayment for benefits back to the start date. The attorney takes his/her cut out of the repayment money once you get it.
    I hope this helps. I went through this process with my dad, and I won’t pretend it’s not challenging and frustrating. The attorneys are overloaded and may not be responsive, things may take a long time, and you will almost certainly have to resubmit things that SSD “loses” along the way (so scan or keep photocopies of everything!) Also, I do know that it’s ridiculous and infuriating to have pay an attorney out of the money you are awarded to live on, just to force SSD to hand over what you clearly qualify for anyway. The system is appalling. But please, don’t give up yet. Your case sounds like a strong one. Once you have your payments things will improve (at least some!) for your family. You have my sympathy and very best wishes. Good luck!

  • Elaine Williams
    6 years ago

    Get an attorney that specializes in Social Security Disability to appeal the denial. There is a set amount that they can charge. Many people are denied the first time. Do not give up.

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