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Living with Migraine

My migraine has cut off those around me

  • By shelleysqrd

    I am a migraineur and have been off of work since April essentially. I tried to return twice but ended up home within the week. I miss my friends at work most of whom don’t know why I’m out. I follow and touch base with many of them thru Facebook but everytime I post about my migraines I end up deleting the post. I am afraid to admit the reason for my absence (& their overtime) because I don’t think many would understand that it’s not just a headache. It’s excruciating pain for days at a time followed by post-drome. It makes me feel lonely which, on top of the stress being out of work causes, only adds to the problem. According to my doc I may have to go on total disability. My husband is very supportive but even he doesn’t understand the scope of the problem. The stigma of migraine can be as bad as the migraine itself

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  • By Nancy Harris Bonk Moderator

    Hi shelleysqrd,

    Thank you for sharing that with us. You’ve described what many of us have been through or continue to go through, you’re not alone!

    Migraine is a complex genetic neurological disease that can impact our entire body. There are many, many articles on our site you may want to share with your husband so he can better understand migraine disease. I can start you off with this search; https://migraine.com/?s=migraine+disease&submit=Go.

    I had a hard time deciding to file for SSDI. I finally did and was approved with the help of my attorney. Only after working a part time job (about 30 hours if I remember correctly) I was overqualified for and failed miserably did I apply for SSDI. And by fail I mean increased pain, more infusions and being in bed.

    If you haven’t yet seen a “true”migraine disease expert, I would encourage you to do so. These doctors may be different from neurologists in that they are board certified in headache medicine which is different than being certified in neurology. When you get a moment, take a look at this information on these expert doctors; http://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/really-find-headache-specialist/.

    Let me know what you think,
    Nancy Harris Bonk

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  • By shelleysqrd

    Thank you Nancy. I’m fortunate that my husband is in my corner corner and is my rock. I shared an article from this sure and he understands as much as someone who doesn’t have them can. My doctor has been exemplary and is progressive in the area I live in but I will take your suggestion and search for migraine specialist. We tried ketamine infusion over 3 days and it was a miracle – no head pain of any kind fir for 8 days. We are trying to get second infusion set up but the hospital pharmacy doesn’t feel comfortable so they have been going back & forth over the last 6 weeks. They have a meeting on the 20th to try to hash it out. I guess I just feel isolated because none of my work friends has checked on me for over 2 months and I won’t post the reason for my absence. In essence I’m having a pity party that I need to just stop

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  • By Luna

    ” In essence I’m having a pity party that I need to just stop”

    I’m trying to keep distracted from that pity party today. My sisters 81st birthday party is today. At least one other sister from out of town will be there. I’m only 25 miles away but am not at all feeling well enough to want to drive. Haven’t seen the one from out of town for several years. Sad state of affairs for sure.

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  • By parmes

    I completely understand this feeling of isolation. I lost my last two jobs because of my migraines/seizures and I have 1 friend from those 2 years that checks up on me. It’s disheartening, and one of the many reasons i say this disease comes with a dose of depression no matter how optimistic you are.
    I’m a workaholic. The fact that I can’t hold a job anymore hurts. But I can get used to it. What I can’t get used to is talking about my pain with a friend or family member, and literally watching their eyes glaze over. Waiting for me to shut up so they can leave. I hate feeling like I’m “actively pushing people away” just by speaking. I should be allowed to have friends and pain at the same time. Is that really so much to ask?

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