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3 year long migraine

I was finally diagnosed with intractable variant migraines last year. However it’s almost 3 years since this incredible migraine started. I’ve done IV treatment, blood pressure meds, anti seizure meds and so many more. It goes in waves. Some days it’s just painful like a 5 or 6. Other days it’s so intense that the feeling of my hair hurts,I can start to lose my vision, have vertigo attacks, nausea, nose bleeds ect. At that point it’s a 9.8. I try not to say a 10. Because I have hit that before and thought I was ligit dying.

No one I talk to understands or can wrap their head around the idea of this. In all I’m just looking for someone to say I’m not alone in this. It is tearing me down. Thank you

  1. Hi megan0303,

    You're absolutely not alone!! I'm sorry to say many of us deal with chronic migraine attacks, like you, every day. Migraine disease can be exhausting, debilitating and frustrating, as well as make a negative impact on our life, career, and relationships. We get it and are here for you!!

    I understand it may feel like we've tried everything out there for migraine disease, but that really may not be the case. There are over 100 medications that can be used to treat migraine disease, and that number is going up with new treatments coming out!!

    If your doctor is telling you he can't do anymore for you, it's time to find another doctor. There are doctors who are board certified in headache medicine, which is different than being certified in neurology. These articles have information on how these expert doctors are different and how to find one; https://migraine.com/migraine-headaches-doctors/ and
    https://migraine.com/blog/seeing-a-board-certified-headache-specialist/.

    I hope this helps and I look forward to hearing more from you!
    Nancy

    1. You're not alone. Everyone on this site can relate. We all have our story, the meds, procedures, therapies...the days when we think we are going to die, the days when we want to die. We are all in this together and you will find a tremendous amount of support here and you may learn that you haven't tried everything, you'd be surprised at how many treatments are available. The plan I'm currently working, I learned about here, it's not even offered in my state, but luckily it's only an hour drive from where I live and I fought and won and my insurance covers it. You're in the right place. Just start asking questions.
      Good Luck
      ~Dana

      1. I too suffered with daily migraines for years until I was forced into retirement. Losing the stress of my job helped break that cycle and now I have daily headaches that hit 4-5, but I don't rate a headache as a migraine unless I hit 6-7. I only use my precious migraine pills at 8. Can't communicate at 9, and unconscious at 10. I have syncope migraines. Now days I only get 2-3 migraine days a week. No, you are not alone, but that doesn't really matter because when you are in agony, you're not worrying about how many of us are hurting with you, right? But what you may worry about is that this will never end. I pray for you that someday soon, you will be relieved!! Now that my migraines have eased up some, I have a better attitude about them because I know they won't last forever. But back when it was every single day, I was so afraid that the rest of my life was going to be pain, and pain only. Please hang on to hope. Hope that there is a solution out there! I know you don't want advice right now, but since I live in so much other daily pain (back, neck, FMS, MPS, and more for over 40 years), I have learned that an attitude of gratefulness, joy, and thankfulness, in spite of my illnesses, lowers the stress of the pain. Try to find joy everyday even if it is only a great cup of coffee or a sweet scent of cinnamon. Focus on something pleasant. It may sound crazy, but it helps.

        1. I actually got on this site as I am in one of my worst bouts of cluster migraines in 20 years. It has been going about 1.5 months now off and on. You aren’t alone. If it’s not intense pain it is a contestant dull pounding. While my headache bouts don’t last nearly as long as yours, I get it. There is always that specter hanging around of “when is this pain going to kick in again”. It’s almost like you cant ever really relax, which stresses you out and here comes another migraine from that trigger. My only real advice is to enjoy when you aren’t in intense pain as much as possible and try not to dread the next wave. Easier said than done I know but try.

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