Forums


Living with Migraine

IS THIS REALLY MY LIFE…MIGRAINE ALL THE TIME

  • By melindas

    migraine all the time…what an understatement! i wake up with migraine, try to get on with my day and go to bed with migraine. i am tired of meds that don’t work and people giving me dirty looks because they don’t believe i have a migraine. i really don’t know what a migraine is supposed to look like…or why i don’t look like i am in pain that affects everything i have to do on any given day. i know that there are people out there who have way bigger problems than me, but sometimes its just too much. i try my best to be positive and just keep it moving, just not that easy sometimes. i have to do most of my traveling to run errands in the evening because of the summer sun and heat. i sleep in a lot because i just can’t get up and out in the morning. it is so easy lately for me to feel depressed and alone with all the hurt my head is in all the time. i just want one whole day without any headache at all just so i can remember what it feels like.

    Reply Created with Sketch. reply
  • By ndw6888

    I’m so sorry, melindas. Daily chronic migraine is every foul word and can be so much more than an constant unwelcome pain. It has the ability of tearing what feels like the very fabric of your life and sense of self. It can also feel like hoperless stabs in the dark looking for doctors that listen, treatment that makes a dent, and people willing to not only believe what you say, but meet you where you are as we struggle to figure out where we are.

    It seems like folks with daily chronic migraine carry extra guilt for never really feeling better. It can seem like a personal failure if we aren’t constantly seeking amd trying a new treatment or showing progress in prevention, let alone trying to live and manage daily life.. It can feel even worse to stop and grieve for the changes that the disease brings.

    I’ve had so many bleak days trying to redefine my sense of self and purpose while trying to cope with the pain. I hope you don’t feel like a failure for it. And I hope you find a system that makes the day to day more bearable.

    There are three times a day that mentally strike me harder than most: getting out of bed, trying to fall asleep at night, and mid-afternoon (especially when it is hot) with the anxiety and sinking feeling that I’ve “wasted the day”. Awareness of those times mixed with some acceptance to ride oit the emotion sometimes helps a lot. But othertimes the migraine gets the best of me, especially when I feel like I have some momentum (mental or physical) and my body says otherwise, so the migraine prevails.

    Some smart, wise person supposedly said that to survive with your sense of love for self and humanity intact (I’d probably just say sanity or hope), we have to come to terms with the “guests” we keep. So, probably from a mix of craziness, desperation, and a hint of acceptamce, I’ve tried to emotionally allow space for my “migraine guest” because after two years of constant compainionship, she doesn’t seem to be leaving anytime soon, even though I’m trying to nudge her out the door.

    I’m glad you exist.

    Reply Created with Sketch. reply
  • By lindaann

    I am glad I finally decided to join a forum if only to know I am not alone.. Having chronic migraine is exhausting. I am going on 40 years of dealing with migraine, daily headache and a host of other related symptoms. I have fewer and fewer good days every year. I have gone without meds, been on crazy diets and tried every alternative therapy known to humankind. When some innocent person suggests raki or something similar I try not to
    laugh out loud. My husband is hopeful that the new CGRP’s is the answer but I do wonder if this is just my life. I still function, work and try to do as many social things as I can but I am getting tired, very very tired.

    Reply Created with Sketch. reply
  • By janell

    I’m so sorry to hear about the pain that everyone is going through. I’ve been struggling with migraines since I was a little girl. I didn’t truly understand that the painful headaches I was having were migraines, and wondered why I always had them after a fun sleepover with friends. At a young age, I learned that sleep was a necessity to ensure I could limit these painful migraines.
    For the most part, I went through a large part of my young life with limited migraines once i learned what triggered them. But, at 23, when I got pregnant with my twins they came on strong and never went away. After having my third child, I had a seizure and was at the peak of pain, with my migraines lasting 3-5 days at a time. And, living with them for about 20-25 days out of the month.
    The best way for me to deal with them was HOT showers to “open the blood vessels.” Alternatively, a hot blow dryer near my temples. This was a temporary fix, but allowed me just enough relief to rush to sleep.
    I’ve tried every migraine medication, but found no relief. Even the ones that only allow 9 a month. About a year ago, I tried CBD Oil. 3-4 drops under my tongue. It sometimes takes up to two doses, but it works. it’s all natural and hemp based. I’ve never been big on weed. So, I opted to go with http://www.3blforliving.com, because their CBD oil has zero THC and is FDA tested and approved. Now I take it daily for maintenance. And, I literally MIGHT have 1 migraine a month. And, it never lasts a full day. Welcome relief. I hope this helps.

    Reply Created with Sketch. reply
    • By ndw6888

      Melindas, after I wrote this, I had a week that kicked my ass and I ate all my words. I tried going for a walk today at dusk with my dog and husband and ednded up crying covering my ears because every noise felt like an onslaught. I read in another post of yours that you’ve been dealing with this for decades. Mine suddenly appeared a little over 2 years ago with an initial 158 day migraine. I thought for sure I had brain cancer or slowly swelling aneurysm. I never imagines that migraines could do this and now I equally can’t imagine a lifetime of this. I really hope you are doing okay and making it through the day to day. Is there anything that helps you?

      Lindann, I just joined the community too. Like with melindas, I can’t imagine decades of this. It made me smile to myself reading your response to well-meaning new treatment suggestions. I’m pretty exhausted with the idea of trying anything else. I’m usually a voracious researcher because it makes me feel a little more empowered and I have a difficult time staying still in bed on bad days, but I can’t bring myself to read anymore about CGRP’s. A frw months ago, I told my husband that I don’t care what the “treatment” is, I will take the placebo effect if I can find it. I just want anything to go back to the life I had before. I don’t find much validity in reiki, supplements or many other miracle cures, but man, if believing in them makes me feel better, I’m willing to drink the koolaid

      Reply Created with Sketch. reply