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Flight, Cruise, Flight (what triggered this?)

My family & I went on a great cruise the end of May for 7 days. After the cruise, we spent two days in Florida with family. The day we flew home I complained that I had a slight headache however, the next day I woke up with such a bad migraine I couldn’t get out of bed that was June 4th. Since then I have been hospitalized to try and minimize the pain and to get rid the migraine however I had no relief. I was discharge because the pain was controllable with oral medication & injectables.

Some background with me, I have chronic migraines which was due to having white matter lesions diagnosed after a work up that was done based on determitation that it wasn’t MS. The cause was migraines as a teenager. It was verified with another MRI in the hospital that there were no new changes to the MRI.

I seem to have both migraines on the left side and tension headaches. I also was diagnosed with Raynaud’s and Lupus about 2 years ago. What I don’t understand is I had no joint pain, headaches, or migraines the entire time on was on vacation. Once I am up for about an hour I had a migraine or a tension headache everyday since June 4th. I am having some good day and some bad days.

Prior to going on vacation I had a 40 hour a week job as a Government Billing Manager for 18 years now not working at all. I appreciate that I can tell my story but I’m having trouble with understanding how people really live with daily headaches.

Thank you all for listening.

Jennifer

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Comments

  • Patrick
    6 years ago

    I’ve been disabled and unable to work due to chronic migraines for about 4 years now, and living with it is requiring an insane amount of tolerance, patience, and an open mind to rediscover what life is. It’s not tolerance towards the pain and nausea, although exercising that can help a little. It’s extremely intolerable as anyone with chronic severe migraines knows well, but it’s tolerance and patience with yourself at the inability to do anything when they strike. I use the word tolerance similar to acceptance, but acceptance would be the wrong word too because it’s unacceptable how debilitating it is. I think it just needs to become a tolerated state because we have no other choice and being upset about it does nothing, or just makes it worse.

    Having an open mind towards rediscovering what can be done on a very unpredictable schedule has helped me the most lately. I’m just learning to recognize when I feel well enough to do something, how long I might have to do it, and the risk vs reward associated with exposure to triggers just to get more out of the opportunity. I try to imagine what it would be like if I was born this way and knew nothing else. It would be impossible to complain about the things we can no longer do, and is just as equally useless to complain about them in our situation. The best mentality is to enjoy the things we can on the good days and know the bad days will pass, and in this way we are just like everyone else. We can all dream about being rock stars or millionaires but at the end of the day we have to be realiztic and enjoy the unique experiences we are given in life. The journey to find what makes us happy within our limitations is the same challenge for everyone so don’t let the migraines stop you from moving up that path. It’s just one of the obstacles we were given out of life’s bag of tricks, and still could be something that will likely be cured and left behind us one day.

  • naolstaylor
    6 years ago

    Nola you said it! It’s existing and finding joy in new things regardless of how big or how small. A good day is celebrated but they are so few and then far in between. I too have Raynaud’s with Chronic migraines as well as Chronic Cluster headaches. I was a college instructor and Advisor. I loved my job. But due to the severity of the headaches, loss of vision, auras, and even paralysis from the headaches, I have been on longterm disability since October. I sit in shock at how this has affected my life.

  • Nola
    6 years ago

    “Living” with daily headaches is probably a misnomer. Existing surely, but living, really living? I manage from day to day, but long term plans are usually out of the question. Daily migraines and/or tension headaches make it impossible to enjoy life the way I used to, so finding other forms of enjoyment are essential. Take your triumphs where you can and celebrate them. Even if the triumph is just having the kids over for dinner on a Sunday evening or being able to do something that you used to take for granted, celebrate it! Live the moments you can, and hole up when you must.

    I hope you get into some kind of management which will enable you to enjoy at least some portion of each week.

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