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I can’t take Another day of this

I’ve been a migraine sufferer for over 12 years it’s taken over my entire life. From being able to have children to having a job to basically doing anything on a day-to-day basis. They get so bad sometimes to the point I have to go to the emergency room. I’ve seen way too many neurologist to count I tried every medication on the market recently I started taking Qulipta and was extremely hopeful that it would work. I’ve been on it for 14 weeks and I haven’t noticed a difference. Something needs to give I am miserable. I now am a mom a of a 2 1/2 year-old and it’s a struggle to take care of her because I can barely get out of bed. I have medications I take for rescue pain but I feel like that’s just giving me rebound headaches and I’m stuck in this out of control spiral of rebound headaches. I don’t know what to do. I feel like no one can help me. I know I need to cut back on the rescue medications but it’s the only thing that keeps me able to get up and do what needs to get done. I have zero Hope left that I’m ever going to get rid of these migraines and to think of life of having these everyday make me beyond depressed. I just want my life back. I want help and I don’t even know where to begin to get it. I now have Constant dizziness and eye problems. I’ve been to every specialist to rule out what could be causing that nobody can help me it’s been going on for a year now. It’s bad enough to have these horrible migraines but now to have dizziness and eye vision problems it’s just too much.

  1. I'm so glad you wrote in to share where and how you are. I have absolutely been exactly there- raising small children while combating severe and daily migraine. Trying to navigate the challenge of limiting rescue medications when that is the only thing allowing me to sort of function. It really is so hard. You are not alone in this. Please know you are among a community here who understands. It's exhausting to try new things and it sounds like you've tried so many given your last attempt was Quilpta, a very recent addition to the CGRP options. Are you working or are you on disability? Removing the component/stress of work can assist with the overall load. So sorry to hear you are having eye and dizziness issues a top everything else. Do you feel good about the relationship you share with your migraine specialist? We are here for you and in this with you. Warmly- Holly team.

    1. Hi Ricecakes. I’m so sorry that you are feeling so bad. I can’t imagine having the migraines AND having a 2 year old to take care of as well!! 😳 I was fortunate enough that my migraines didn’t start until I was in my 50s, so my kids were all grown by then. It’s still bad. I am seriously depressed from it, & the effects it has on my marriage, & my life. My husband says he understands, & in some ways he does, but in others he has no clue, or he wouldn’t get so angry with me when I forget things. Or, hold it over my head that he has to drive me places, bc I don’t trust myself to drive. It’s a problem. Sometimes, it gets to be too much for me, too, & I wonder how much more I can take. I have my 101 year old mother, who I need to watch out for, even though she’s in an assisted living facility, & a little dog, who I love so much. I’m in counseling & I pray, a LOT. I will pray for you, too, my dear. No one, & I mean NO ONE, gets it if they aren’t in it, if they aren’t living it like we are. That’s just a cold, hard fact. This is the best place I’ve found to just let it out, with others who are in the same or very similar situations. Because, WE GET IT. The moderators get it, too, because they are also sufferers, as far as I’ve been able to tell. And, sometimes, all you can do, is take one day at a time . Or one morning at a time, then, one afternoon… You get my meaning. Just coming to this site is a big help to me, just to know I’m not alone. I truly & most sincerely hope that you find some help & solace here, or from whatever source you can. My prayers are definitely with you. 🙏🙏🙏

      1. as a migraine mom with grown children, I can tell you that the experience of having a mother with migraine makes them more compassionate and understanding. Remember, you are the only mom she has, so no matter what, you are the BEST mom and she doesn't care if you can't do certain things. That said, I have been there. I remember driving my children to school then speeding home to throw up. Fighting pain and nausea while reading to my daughter's second grade class. Having to call another mom to drive my kids home from sports because I couldn't. What you can't do is give up, because even if everything you've tried has not really worked, there is SOMETHING out there that will. You may want to take a look at "The Dizzy Cook" website and other current information about vestibular migraine. A lot of people have found relief through diet and other changes. I also tried everything from acupuncture to CGRP drugs, with no luck. I finally went on preventative amitriptylene which seems to have brought my migraines down from 15+ to about 6 per month, and not all bad. I am able to hold down a job (I had stopped working for a good 10 years). There is hope. And the great thing is, work from home options are much more common now, and medications are evolving as this illness begins to be better understood, finally. Lastly -- you are in very good company. Millions of people know how you feel, including me, and we are all in this together.

        1. I cried through the whole statement you said about Moms. It was such a kind and caring reminder for all us Mom’s who doubt ourselves because of this disease.

          Thank you ♥️

          🌻🌻 Amy

      2. I have been exactly where you are. I have a nine-year-old now, but when she was younger, I felt like I could barely function. I still have my days like this. I have eye problems and dizziness too. It took a long time to get an accurate diagnosis on these issues. After many years of ENT doctors telling me they couldn't help me with the dizziness and they had no clue what was causing it, I finally was referred to a dizziness expert. I went through a battery of tests, and the only thing the doctor could conclude was that I had nerve damage to one of my ears due to untreated migraine attacks or that I had Vestibular Migraine. Either way, he diagnosed me with Vestibular Migraine. I have had migraine disease for most of my life, but it was not diagnosed until I was in my 30s.

        As for the eye problems, I was diagnosed with dry eye syndrome. It affects my vision tremendously. This particular eye clinic also had a specialist in other eye problems, and after testing, they found that my eyes were not "teaming" while I was seeing, which caused a lot of the eye exhaustion. I feel lucky I found this specialist. I have been doing eye exercises to keep my eyes focusing better.

        I know this sounds like a lot, but this is my experience, and there is hope. Keep pushing for an accurate diagnosis on each of these issues. It turned out, the dizziness clinic had been around a long time and none of the ENTs I saw referred me to it.

        Please keep in touch and let me know how things are going. We are here for you.
        Peggy - team

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