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Living with Migraine

My story

  • By Lifecoachjane

    I’ve been getting migraines since 2010 when I hit my head on a table. I just had my second occipital block a couple weeks ago, it has helped somewhat with the day to day migraines in that they fluctuate now from a 3 to a 7 on the scale rather than higher than that. One of my main triggers is fluorescent lights. This really limits where I can go as you can imagine. I wear a brimmed hat and dark sunglasses whenever I have to be in the lights (the special glasses for people with migraines did not help at all) but even with that I can only be in the lights for about 30 minutes tops. I haven’t been able to work since I had to leave my job in 2011. People who don’t understand (like my sister) tell me I just need to suck it up and work through it, as you know that’s very frustrating to hear. I’m in the process of trying to get social security disability (has anyone else done this?) but of course it’s a long process.

    One of the things that these migraines has allowed me to do is go back to college. I have to take my classes online but that works for me very well. Most of my professors have been understanding and given me some lea way with assignment due dates fortunately. I just keep hoping that along the way one of the many medications that are out there (many that I’ve already tried) will help me so once I graduate from college I am able to work. But in the meantime at least I feel like I’m doing something positive for myself.

    I would love to hear how other people cope in their daily lives.

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  • By Nancy Harris Bonk Moderator

    Hi Lifecoachjane,

    Welcome to the Migraine.com discussion forum and thank you for sharing your story with us! This forum is a great place to connect with others and share tips and tricks about living with migraine and headache.

    Migraine is thought to be a genetic neurological disorder and attacks can be triggered by certain stimuli like foods, alcohol, dehydration, irregular sleeping patterns, changes in the barometric pressure and many others. If we are able to identify our triggers, learning to avoid the ones we can may help reduce our migraine frequency and severity. When you get a chance, take a look at this information on triggers; https://migraine.com/blog/migraine-management-essential-trigger-management/

    Head injuries can make migraine attacks more difficult to treat and last longer. i know this from experience. I sustained a traumatic brain injury (TBI) in 1996 and my life changed forever. We have information in this article that may help; https://migraine.com/blog/traumatic-brain-injury-migraine/.

    One of the things we encourage people to do is to see an expert in headache medicine. A true migraine/headache disorder expert is board certified in headache medicine, which is different than being certified in neurology. Don’t get me wrong, neurologists may be fine doctors but have a hard time being experts in one area because they treat so many different conditions such as multiple sclerosis, stroke, epilepsy, Parkinson’s and others. Let me share this information on how these experts are different and how to find one; https://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/looking-for-a-migraine-specialist/.

    I’m not sure what glasses you have, but there are two companies I know of who make glasses specifically designed to help reduce photophobia, or light sensitivity; TheraSpecs and Axon Optics. I facilitate a local migraine support group and one of the members has glasses from TheraSpecs and loves them. She says they have made a huge difference in her life. Here are the links for these companies; https://migraine.com/sponsored/sponsored-proven-migraine-relief-with-new-theraspecs-glasses/ and https://migraine.com/sponsored/are-you-ignoring-one-of-the-top-migraine-triggers/.

    There are people who have been approved for SSDI and have migraine. You can find helpful information on disability in our section devoted to it; https://migraine.com/migraine-basics/social-security-disability-insurance-benefits/.

    I’m going to stop now so I don’t totally overwhelm you!!

    I hope this helps,
    Nancy

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  • By Lifecoachjane

    Nancy, Thank you so much for your response to my message, it was not overwhelming at all! : ) I read the links you sent to me and they are very informative. The glasses that tried were Axons and were borrowed from a family member who used to be troubled with migraines and unfortunately I’m unable to afford to buy the Theraspecs as I haven’t been able to work in so many years.

    I have insurance through the State that I live in and unfortunately that dramatically narrows down which specialists I can see. I did find a headache specialist on the list that is only about 60 miles from me, I can ask my primary care and insurance company about seeing him. The neurologist that I have now does seem to be well informed, she’s the one giving me the nerve block (man those hurt like nobody’s business!)

    As far as social security disability, I do have an attorney, we have appealed a couple times so far and I’m waiting now for the appeals board to get back with me, hopefully it will be sooner rather than later as I’ve already been waiting a year since the last appeal.

    I’m hoping that someday the headaches will just quietly go away, I know that may be wishful thinking but it is actually one of my coping mechanisms, believing. I just keep plugging along. I am in the process of learning Mind Based Stress Reduction, meditation and at least it’s helping me emotionally.

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