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Constant head pain for almost 3 years – Migraine????

  • By Leslie

    Let me explain…. For almost 3 years now, I’ve migraine pain (pain, light sensitivity, noise sensitivity, vomiting some days, body aches some days, body getting colder the worse the pain is) 24 hours a day 7 days a week!! My pain ranges from a 6-8 on a scale of 1-10. I’ve had to quite my job, I rarely leave the house and if I do I always have my sunglasses and earplugs with me.

    I have been to many different doctors, hospitalized several times, had 6 rounds of ECT treatments, had tons of test done, had several blocks, IV’s and injections that didn’t work and been on so many medications I’ve lost count, none of which have helped. I’ve stopped going to the ER because those medications don’t work any longer. The doctors have found nothing that will break or even help lessen my pain. I’m in the process of having Botox treatments but like with all the rest, it’s not helping the pain….I don’t have any wrinkles on my forehead though 🙂

    After I finish the Botox rounds I’m going to ask my doctor if he could refer me to Mayo.

    My question is…is what I’m experiencing truly chronic migraine pain or is it something else? I only have pain in my head, not in my neck or the rest of my body. I’m just really frustrated that we can’t find anything to stop this pain!! I’m 43 and would really like to have my life back!!!

    Thanks for any help!!
    Leslie

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  • By Nancy Harris Bonk Moderator

    Hi Leslie,

    I’m so sorry you haven’t found answers yet and understand your frustration. As the saying goes “been there, done that.” I really wish I could tell you if the pain you are experiencing is migraine, but only your doctor can do that and it’s not safe to do online! It can however, take FIVE years for some of us to be accurately diagnosed – isn’t that disturbing. We have information on this here; https://migraine.com/blog/how-long-did-it-take-for-you-to-get-your-migraine-diagnosis/.

    Picking a clinic rather than an expert who works at a great clinic may be tricky. By this I mean it’s ideal to pick a migraine/headache disorder specialist (a true expert) over a clinic with an excellent reputation in general medicine. Does that make sense? So let’s say XYZ Clinic, center or is considered world famous for medicine. Here’s the catch – if they don’t have a doctor who is board certified in headache medicine, which is different from neurology, it may not be worth the trip. I’m not knocking these facilities, just trying to explain how important it is to see a true expert. This article has more information on what makes these experts so special and how to find one; https://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/looking-for-a-migraine-specialist/.

    In the meantime take a look at this article for more information on migraine and how to manage it; https://migraine.com/blog/migraine-management-essentials/.

    I hope this is helpful,
    Nancy

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  • By Leslie

    I was with one clinic that gave me a diagnosis of depression and treated me for depression with a cause of migraines. Now I’m at a clinic that is treating my migraine pain but I feel like a herd of cattle in the row of cows. I told my doctor that I didn’t feel Botox would work after everything I’ve been through however he pushed Botox as the next step. So here I am, the first round of Botox, I can’t move my eyebrows, my neck is kicking me and there is no relief from my head pain!!!!!! I’m just so tired from this pain!!!!!!

    Thank you Nancy for you help!!! I do wish I could find a doctor that could truly help!!! Maybe Mayo is my best bet!!!!

    Thanks and hugs,
    Leslie

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  • By Lisa Robin Benson Moderator

    Hi Leslie,

    Don’t give up hope with the Botox. It can sometimes take 2-3 rounds before you feel any better, and even if the first round helps it can take up to 6 weeks. Of course everyone is different but I am glad you are trying it. I have known many people who have been helped by it, despite having tried almost everything else. That being said if it doesn’t help after 3 rounds I would ask to stop. Here is a really good article on Botox for migraines: https://migraine.com/blog/botox-basics/

    Wishing you luck in your search to find some relief.
    Lisa

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  • By Erin

    Leslie,I feel your pain. I just returned from the Mayo Clinic in Phoenix, Arizona. I saw Dr. Kate Grimsrud. She is a headache and migraine specialist. She was incredible. I’ve had chronic daily migraines for about 12 c years now. She listened and believed me. She also confered with the doctor who led her department. He was also wondeful. They actually came up with a plan I have hope will actually help me. If you can would highly recommend the Mayo Clinic in Phoenix. I truly hope you can find someone there to help you.

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  • By Leslie

    Thanks Lisa for the encouragement. It’s been 6 1/2 weeks since I had the Botox injection and unfortunately my pain has only gotten worse. I did see my doctor earlier this week and he said since I wasn’t feeling 40-50% better he did not want to continue with the Botox. He is referring me to an IU Headache Specialist in Indianapolis. Honestly I feel like he’s done everything on his checklist and is just passing me on. I haven’t been pleased with this doctor from the start and am ready for someone who will listen and really care! (I’ve only seen him for 6 months)

    So onto another doctor but hopefully one that is better!!!

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  • By picklestheyorkie

    Hi lmasher
    I am sorry to hear about your struggles – My wife experienced something that was in some way similar painwise. I think you look into Dr. Jefferey Brown, a neurosurgeon in Long Island, NY. After 25+ years, he is the only one who truly helped her get her life back. I posted my wife’s story here: https://migraine.com/topic/anything-i-havent-tried/#post-57291 and think he might be able to help. I’m happy to answer additional questions.

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