My pain

Hello
I have had migraines for over 10 years and have tried several treatments. My doctor wants me to do botox but I don’t want to try it so she got mad at me and ask what can I do for you now. I asked for a refill on my pain medicine and she said she could no longer prescribe it to me. So I don’t know what to do about this. If I should continue to see her or not.
I also have fibromyaliga and is in pain from that. I have a family doctor who is a lifesaver. I also have other medical issues and can no longer work. I have been trying to get my federal disability, I was denied and now working with a lawyer to get it and have to go to court.
I hate being in pain everyday and people don’t understand our pain. I want to do more than stay in bed everyday but I can’t work. I know we all have pain and our own story. It good to have a support systems that helps.
There is more I could say but I will stop here. If there is anyone who share the same issues please respond or comment on my post.

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Comments

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  • WCMigraineMom
    2 years ago

    I have had migraines since childhood but they changed once I had a right frontal hemorrhagic stroke September 2014. I am very lucky to be a stroke survivor however the one thing I have gained from the stroke is right-sided hemicrania continua which is a constant headache/migraine which never goes away.

    I can tell from the looks I get from some people that they don’t believe I have a constant headache as I still continue to function. They don’t understand I am putting ona front so I can “blend in” with everyone else. They don’t understand I cannot afford to be on disability and I am fortunate that the pain rarely has me bedridden so I feel so badly for my fellow migraine sufferers who are bedridden or disabled from the pain and related symptoms.

    The neurologist that I had over one year ago tried at least 6 different oral meds which did not work. Two of them were anti-epileptic drugs and one of them caused hallucinations. He then suggested Botox but I replied I will consider it if nothing else works. I explained I don’t mean to offend him by refusing that treatment now but felt like he was throwing that at me because he ran out of ideas. He couldn’t even explain how the Botox would help my specific migraine issue. I then called my PCP and explained my plight and she referred me to another neurologist whom I love. He and his nurse practioner both understand where I am coming from and are right now trying new medications. I have been on Tylenol #3 to help take the edge off the pain so I can function. I don’t want my place of employment to know what I go thru as I am afraid it would be used against me and I don’t want to risk losing my job.

    I am now on my third new medication without relief but they will continue to prescribe the Tylenol #3 which I take one tablet one to two times per day as needed. It brings my pain level down from a 7 or 8 back to my baseline of a 5. I can then function without anyone noticing my head hurts. I know that it only helps with the pain and doesn’t treat the reason for the pain. Until someone can find the reason I plan on taking the pain meds.

    If a physician is requesting a treatment you do not agree with I would get another opinion. That is what I did and I was glad I did it. Who knows. I may end up trying the Botox after all if nothing else works in the near future. I also get tired of the occasional trips to the ER because of severe vomiting with the increased head pain in addition to other symptoms I sometimes get. I have been told that I am not a candidate for a lot of the rescue medication as I have already had a stroke and am now at a higher risk for another one and some medications list that as a reason not to take it. Whether or not that is true I do not know.

    Best of luck to all of you who are seeking answers and having trouble finding them. We all have to hang in there and support each other.

    Donna 🙂

  • DonnaFA moderator
    2 years ago

    Hi Elois – I’m sorry to hear that you are having problems with your doctor. If you feel that you are not being heard, you may want to consider finding a new doctor. You can find information on connecting with a headache specialist in Is It Time For a New Migraine Doctor?

    Many people are at first denied for SSDI, but Yes Migraine IS a Disability. Working with a lawyer is a great solution to ensuring you get the care that you need.

    Thanks for being part of the community and reaching out with your questions. We’re always here to share support and information. -All Best, Donna (Migraine.com team)

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