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New Feel like I'm the only one with long lasting migraines

Since my son gave me the link to this site, I have become bolder and bolder in reaching out. today I am posting a question as often I feel so alone as a migraine suffer because it is not every day you meet someone and you say "Oh I suffer from debilitating migraines." and their reply is, "No, way me too! We should support one another!!" Usually I get, "I found this site, this pill, this article/book, deficiency in you, etc. that will help you migraines to go away because it helped so and so." I feel so emotionally tired, on top of the tiredness from the pain. Well, on to the question. I have suffered with migraines for 25+ years now. My husband and I thought I should take early retirement from my teaching career, thinking that would help loads. On the contrary. Over the past 5 years my migraines have increase exponentially, to the point that I can have a migraine that will string along from 3 months varying only in pain intensity. When I tell people this, even my husband sometimes they look at me like I've lost my mind. Well, now I'm beginning to think I have. I feel like I have lost my life and a LOT of relationships; and most of my my time is spent alone in a dark room. I just feel as if I disappoint so many! Is there anyone out there that has migraines that last so long...since September I feel like I've been one long migraine and if I step out of line I infuriate it! I'll leave the insurance change of meds out of the question and how that has impacted the issue. Sorry it's such a long question and thanks for reading!

  1. Hey girl! So sorry you are in this club none of us wanted to join. You and I are similar in a lot of ways. I was a teacher too for many years, finally had to stop when the migraines became daily. Am now housebound, except to go to doctor because the light sensitivity is so severe. I don't really blame the stopping teaching for mine getting worse. My husband tells me I should have stopped long before I did. I just desperately didn't want to leave my kids. I think my body was going to get sicker no matter what I did. I've lost most of my former friends. I think a lot of people don't know what to do when someone is really really sick. I think it's scary to them, and a lot of them just leave.

    I also have TERRIBLE intractable migraines, which it sounds like you do, too. What sorts of things have you tried? (Sorry if it sounds like I'm that dork recommending a pill, that your read this article, rub this snake oil on your forehead). For me, triptans stopped working and painkillers just cause killer rebound. Do you ever do infusions? Those are the only thing that break up my migraines. On a good cycle, the attacks go on for 5-7 days. During my bad periods, they'll last months. I sometimes need several IV infusions a week, but they eventually usually break up the attacks and settle my head down. If you've already tried that and they don't work for you, then sorry to make another useless suggestion, and I hope you can find some friends/comfort here.

    1. So I was looking for how to ask a question and found "you have replies to comments". Hmmm...so I am reading them and seeing, even more so, how much this site has to offer. I do appreciate your suggestions and somehow it is much easier to hear from another migraine sufferer. I sometimes feel when some others suggest things to me, it is more that they think it is the 'one' thing I haven't tried and they think I need to get on it because wala...my migraines will be gone. I know it is in all sincerity and concern, but the 'pressure' I feel when I am letting them down when it doesn't work for me. Thanks for your comments and suggestions!

    2. Hi luvmyfam,

      Thank you for your kind words!! We do have a lot to offer here at Migraine.com!!!

      On one hand it's great that we have people in our lives who are concerned about our health and want to share migraine treatment ideas with us. On the other hand, it can be frustrating because we've tried most of them!

      I take a deep breath and say thank you!!

      Nancy

  2. Hi Luvmyfam22,

    Thank you for sharing your story with us - we're glad you found us! First let me say you're NOT alone! Many of us have chronic, intractable migraine disease,which takes it's toll on family, relationships, and careers. Having a good support network is vital when living with any chronic illness - we're here for you!

    I've been on SSDI since 2009, so I get it. I was a difficult decision to apply for SSDI, but totally necessary. I've adapted to my new normal. Some days are easier than others.

    In addition to the great information GardensatNight gave you, I wonder if you've had the opportunity to see a "true" migraine/headache expert? These doctors are board certified in headache medicine, which is different than being certified in neurology. I'm currently seeing the 5th true expert and am finally getting somewhere. Sometimes it can take seeing many of these experts before we find the one who will work with us. Let me share information on how these doctors are special and how to find one; http://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/really-find-headache-specialist/.

    I hope this helps!
    Nancy

    1. I just found this area, I have not been able to figure out how to get here! before I have been just stumbling around now I think I'm actually finding my way around! I have been wanting to say thank you so much for your replies and suggestions. Yes, as I am sure as we all do, we get those ever meaning "Hey, I have the cure for your migraine!" suggestions from friends and family. But it means a lot coming from you both because I know that you understand because you have experience and knowledge with what I am going through. It means so much and I am looking into the infusions as I've not heard of that before. So thank you for that. This site has really made a difference in my life already and I am on as often as I am able. Thank you so very much and I look forward to looking into your suggestions!!! May you be well and at Peace

      Karen

      1. HI Karen,

        WOW! You made my day! Thank you for your kind words. We're thrilled to hear you are benefiting from our site. Please let us know if we can help.

        Nancy

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