Daily migraines

By joshuasmom

1 min read

My son had his first migraine at age 6. He has headaches on a daily basis & is now 21 years old. He was hospitalized for 7 days at one point & the diagnosis was definitive for "status migrainosus". He has not known much of life beyond physicians offices & hospitals. He has been caring for me for the past 3 years as I was diagnosed with CRPS. When that diagnosis was given, our world was turned (even further!) upside-down. He hasn't had the chance to further his education (he's very bright) & now at this point, he doubts whether he can even join the work force at any capacity! With his daily struggles with the headaches, he finds that he has difficulty concentrating, which is quite understandable. He worries that he would not be able to live a "normal" life...EVER.

This is something that grips me with fear! Josh is so talented, so intelligent, & yet he has this "barricade" in front of him. It seems to be miles high & insurmountable. What does he do? File for disability? Could he actually qualify? What limitations are there with a "disability" label? He has so many questions & fears that he will not "amount to anything". Josh also has Grave's disease & "suspected glaucoma". He has overcome other illnesses throughout his young life & we thank God for that!
Josh is tall & lean with a smile that lifts your spirits. He's beyond kind & compassionate with a polite manner that is befitting of one 3x's his age! He's such a great guy, with so much to offer.
I worry about his future. The heartbreaking thing is...I know he does too. :(
Any words of encouragement would be greatly appreciated! Merry Christmas to all...!

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jean Member
We don't live "normal" lives. I want so much to encourage you to keep going forward as best you can and not give up. I wish you strength to keep up the struggle. Please don't give in to fear as it only drags down and makes it harder to think of possibilities. From what little I know he should qualify for disability but it has to be fought for. They turn everyone down the first try. A disability label can be a draw back but also there are organizations that help because of the label. Merry Christmas to you and your family.
waxpass Member
You need to go to a major teaching hospital for Josh's treatment: he is too young to give in to this totally. Finding the right doctor and figuring out a daily med to bring the migraine to a bearable level is the course to continue to pursue. I understand there is also the possibility of surgical intervention in the form of injection into the lower head/ neck area( Univ. of Md. Hospital Center.) Johns Hopkins has some excellent doctors for migraine too. As for disability, there are attorneys who specialize in this, but getting the right doctor aboard would also help in securing disability if he cannot find relief. Good luck to you both!
Katie M. Golden Moderator
Kate, This is heartbreaking. He should definitely apply for Social Security Disability. Even though he hasn't had a job or paid into SS, he could meet the criteria to receive Social Security Disability Income. <a href='https://www.ssa.gov/ssi/text-eligibility-ussi.htm' target='_blank' rel='noopener noreferrer ugc'>http://www.ssa.gov/ssi/text-eligibility-ussi.htm</a> It is a long process and it is usually helpful to have an attorney or advocacy group to work with you. Usually they don't get paid unless his claim is approved. Here's an article I wrote that might have some useful information: <a href='https://migraine.com/blog/disability-income-preparation-guide' target='_blank'>http://migraine.com/blog/disability-income-preparation-guide/</a> There is a stigma attached with being disabled, but the system is set up to help him find skills that he CAN use and if he does start a job, there is a grace period before they cut off funding to give him time to see if he can actually perform the job. Personally, I had to get over this hurdle in my head that being on disability meant I wasn't allowed to leave the house or have fun- that's not true. You can lead a normal life when your condition allows you to. As LAW said, there are so many treatment options that are best explored with a Headache Specialist or at an in-patient headache clinic. I've been to the Jefferson Headache Clinic and they have helped me to manage my headaches much better than I did on my own. It's frustrating, but every time you think there couldn't be anything else to try, there really are new treatments out there. I encourage you to look into a Headache Clinic such as Diamond in Chicago, Jefferson in Philly and Michigan Head and Neurological Institute. I wrote about my experience at Jefferson here: <a href='https://migraine.com/blog/headache-camp' target='_blank'>http://migraine.com/blog/headache-camp/</a> Let us know if you have any other questions! -Katie <a href='https://migraine.com' target='_blank'>Migraine.com</a> Moderator