Losing Precious Time

Hi everyone. I’m am 52 years old and lucky enough to be married to my boyfriend/ best friend/ soul mate for the last 17 years. I’ve had migraines my entire life but they did not become disruptive (& destructive) until about 3 years ago. Mine are best described as bone -crunching pain that starts on the left side of my head accompanied by nausea/ vomiting, dizziness and all of the usual migraine issues with light, sound and movement.

What started as a once a month issue three years ago has progressed to 28/30 days a month. I try working even when I have one but lately they have been too horrible. Though I work at a company that has tried its best to help me out I am currently on verbal warning for termination having used all of my FMLA and vacation time. The worst part of all of this is that I’m losing precious moments with my husband who is in end stage kidney failure. Dialysis is not helping as much these days so every minute I’m confined to bed is a minute I don’t get to spend enjoying time with him. I’m currently in my 17th day of this migraine and even though my physician sent me to the ER the doctor treated me like a drug seeker. They gave me solumedrol, phenergan, toradol, pepcid, zofran and benadryl. When those didn’t help he said I would just have to deal with it. He wouldn’t even try the Depakon I usually get. Even my neurologist is tired of me. Can’t say I blame him. I’m still waiting on a call back because I now need to go on short term disability.

The pain and nausea are almost unbearable. It’s made even worse because I feel so hopeless and frustrated. Being told nothing can be done is devastating. I’ve tried acupuncture, multiple medications, essential oils (though I am just starting to try those).. My husband is supportive and loving even though he feels tired all of the time. He’s the sick one but I’m the one who’s in bed all of the time. Makes no sense. Very long story short is that migraines are destroying my life

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Comments

View Comments (8)
  • shelleysqrd author
    2 years ago

    Thank you from the bottom of my heart for taking the time to respond to my story. Each of us has one ( or 10 or 350…? lol). I misspoke about my physician-he is and has been doing the best he can. I’m on short-term disability at the moment though they are still deciding if my claim will be approved.
    @Virginia-I’ve had one of those tests for allergies and I feel for you! No allergies except sulfa (and a med that was just added Nubain.
    @JRTC-I’ve not heard of neurofeedback but I looked it up after reading your comment. Seems there are not a lot of MDs who practice this. (Tell you something you didn’t know right?).
    AKS2868 and Erin, thank you
    I need to catch up on reading stories so until the next time, may your pain be always far away and your loved ones always near.
    Warm regards
    Shelley

  • Vmjkrause@gmail.com
    2 years ago

    My migraines have also increased with age, and I’m so sorry this has happened to you along with what you must deal with at home with your husband’s serious condition. I have had more luck with a pain specialist than with neurologists. There are many treatments and for now I get by with morphine and have an implanted pain pump dispensing Fentanyl, Hydromorphone, and Ketamine. You deserved better than the treatment you received at the ER. if you have the strength, consider speaking with patient services at the hospital. I have also found that serious allergy headaches can mimic migraines. I was recently tested for allergies and found out I was allergic to 50% of all the substances tested. The first allergy treatment was not supposed to cause any symptoms but did and made me sick for two days and caused quite severe swelling of my legs. I really hope you can find a good doctor who will go to bat for you. Virginia

  • JRTC
    2 years ago

    I am sorry to hear of your increased migraines. Mine too increased as I have aged. I am 67, and now have them about 20 days per month. I have heard from my neurologist that Neuro feedback, not biofeedback can really help. The problem is that it is not covered by insurance and is extremely expensive and requires many sessions to work. My neurologist said that she used to offer it and 80% of her patients experienced significant relief from their migraines. Have you heard of it in your area?

  • aks868
    2 years ago

    I am so sorry for you and your husband. You have every right to be upset. I pray for a miracle for both you and your hubby. I would definitely find a new doctor, and I would just keep telling your husband how much you treasure him. Your illness is just as real as his, so don’t feel guilty–it won’t make the migraine go away sooner.

  • Erin
    2 years ago

    My heart truly goes out to you and your husband. I can’t imagine what you’re going through. I hope you both find a way to enjoy each other for as long as you can. You’ll both be in my thoughts. Good luck, migraines are a disability.

  • shelleysqrd author
    2 years ago

    Thank you Erin. That means a lot.

  • DonnaFA moderator
    2 years ago

    Hi shelleysqrd, I’m so sorry to hear that you are going through so much right now. I first wanted to share that migraine is a disability. If you have not already applied for SSDI, you may be interested in reading Yes, Migraine IS a Disability.

    It sounds like you feel you are not being heard by your doctor. Please read: Is it time for a new migraine doc?, Looking for a Migraine Specialist?, How To Really Find a Headache Specialist, and finally, Hiring the Right Doctor.

    I hope that these provide some information and resources that bring some peace, freedom from pain, and allow you to enjoy time together. Thanks for being part of the community and for sharing your thoughts with us. -Warmly, Donna (Migraine.com team)

  • shelleysqrd author
    2 years ago

    Thank you so much for taking the time to respond to my “whining” Donna. I’ll look into those sites I’m out on STD at the moment though my workplace has not yet approved-still investigating.

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