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Sick and tired of being sick and tired

Hi, I am 50 and have acute chronic migraine with aura. My migraines did not begin until later in life at the age of 30 when I had infertility treatments. That was 1995, I worked full time until 2001 when I was dismissed for missing too much work. I tried to work part time for two years after that but finally ended up on Disability. I have seen numerous doctors including Neurologist, Pain Specialists and have been and in patient at two Pain Clinics, (twice at one of them). In all this time, I’ve discovered that I have bad reactions to numerous medications. My bad reactions range from itching all the way to Congestive Heart Failure. I’ve had two MI’s because of medications reactions. Unfortunately, DHE and triptan’s top my list of no-no’s, they caused the heart events. Going to the ER is a nightmare because they do not believe I could possibly unable to take so many medications and I appear to be drug seeking. I’ve been receiving botox injections for a year and had seen improvement, but have gone from bad to worse in the last three months. Tramadol is my rescue drug. I live in Ohio where pain medications are so difficult to have prescribed, you more less have to be dying to get them or I have yet to find the right doctor. My newest adventure in pain relief is seeing a chiropractor that specializes in head and neck pain. I saw a chiropractor years ago and my pain didn’t get better and quite honestly I could not afford to see him anymore. If my insurance does not pay for this chiropractor, I am back to square one searching for a pain clinic that prescribes pain medications and will accept me as a patient. At this point my only complete pain relief comes from morphine, fentanyl and some time deluded. My pain level sits at a five on a daily basis and barometric pressure is my arch nemesis. When it drops, so do I. My dream is to move to Arizona, but I can only dream about it as my fiancé, daughter, granddaughter and mom are here and they are my support system when I am down, which is a lot. My greatest fear is uncontrollable severe pain. I do not fear death at all, when I went into CHF, I was calm, it was quiet and I had no feeling whatsoever. It was a piece of heaven, I look forward too, sometimes a little too much. Pain makes us think things we would never consider in our right painless minds. I feel like I’ve been through it all, though there are a few new things I want to try. If you have questions about me or my story or treatments, I would be more than happy to share with you. I have been on Migraine.com for a couple years, but am just now sharing my personal story. Thank you for reading it.

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Comments

  • Katie M. Golden moderator
    4 years ago

    Suellen,
    I don’t know where to begin. First, thank you so much for telling your story and being a part of our community.

    You seem to be an especially hard case due to your heart issues. That must have been so scary.

    I’m sure you’ve tried everything under the sun. But have you tried external remedies that have less side effects? I’m thinking about the Cefaly neurotransmitter. http://migraine.com/blog/cefaly-questions-answered/

    What about surgery? I’ve not done it, but maybe you are a candidate? http://migraine.com/blog/curious-about-migraine-surgery/

    And of course there’s more self-healing approaches. I personally rely on a mix of medication and self-healing to manage my pain. I love yoga,meditation and walking. It took working with a trainer to be able to do those things because I was so out of shape. It has made me feel more in control of my body.

    I also use pain killers when absolutely necessary to avoid the ER. New restrictions and stigma make it so hard for those in pain to get what they need. Advocate for yourself with your doctor. Get a second opinion.

    I want to give you a big hug!
    -Katie
    Migraine.com Moderator

  • Suellen author
    4 years ago

    Katie, Thank you so much, a big hug is always welcome even if it is “cyber”. It means so much to belong in a group of people who really understand what my life is like and I appreciate you and your colleagues for being here for us, even through your own pain.

    To answer your questions, No, I have not tried the Cefaly neurotransmitter, (on a personal note, my fiancé lives in Ontario, we hope to get him duel citizenship in the next couple years so he can live and work in the U.S.). I mention this because the Celfaly was available otc in Canada first. I did look into it, but it was prohibitory expensive for my very limited budget. I also have to admit, surgery seems pretty frightening and that big IF hangs in the air. My greatest fear, uncontrollable severe pain. I nearly died in that kind of pain and I was in an ER at the time, they didn’t discover I was having a heart attack until my blood work came back SEVEN hours later, by then there was nothing left to “code” my heart failed and I could not breathe. My mom told me they told her she needed to say good-bye, my daughter was only 19. This all happened because the doctors in the ER looked at my file and branded me a drug seeker.

    That is probably more than you wanted or needed to know, but it is a big part of the reason I am so fearful of surgery.

    I am horrible at finding help for myself. It makes no sense at all as I sit here and write and admit this, but when I feel good, I don’t want to research and look for help, I want to do things for the people I love who have taken care of me.

    My daughter found an article about the ear piercing, when I get home, she said we would both go and have it done. When I read a couple of people had done this on here, I said ok, as they said, if it doesn’t work you can remove it.

    I do appreciate your input and I will do a better job at advocating for myself, not just for me but for the people who love me and don’t want me in this much pain anymore either.

    This site is a blessing and so are you, thank you.

    Suellen Wissinger

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