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How do you feel about your current migraine treatment plan?

Is your plan working for you? Have you had to try multiple types of medication to get to where you are now? What has your experience been like searching for the right migraine treatment?

Disclaimer: Please avoid offering medical advice! This is a space to share what has and hasn't worked for you. We strongly advise speaking with a doctor or specialist before making any changes to your treatment plan.

  1. I've used Aimovig since it became available. I get good results, it reduced the number of migraines in half and the pain, nausea etc is less. The last 10 days of the cycle I do get breakthrough migraines that last on average 2 days. I am retired now so I can just relax and take oral meds to help.

    1. I have found relief with Aimovig too. I had chronic daily migraines with 8 or 10 severe ones a month. The rest were tolerable and I could usually function. There were 1 or 2 days a month I was migraine-free. Since being on the Aimovig I only have maybe 1 severe migraine a month and only a few mild to moderate ones. For most of the month I am migraine-free. It has been amazing and a God-send. Medications work differently for everyone, but I encourage people who need relief to try it.

    2. So awesome to hear that you've gotten relief from your migraines with Aimovig, . Dropping down from 10 migraines per month to 1 is HUGE!! I can imagine you are feeling over the moon with this change.

      Wishing you well, and look forward to seeing you around the community 😀. - Cody (Team Member)

  2. I’m also retired on Medicare AARP UHC Advantage. I have migraines about weekly. My new neurologist is giving me trial doses of Ajovy and samples of Nurtec and Ubrelvy. I’ve had 2 doses of Ajovy and it does seem to help. Before I retired I was getting Nurtec for $0 with a co-pay card, but that no longer works with Medicare.

    All of the new CGRP drugs work well for me, but unfortunately they are prohibitively expensive. Ajovy is $889/month and Nurtec and Ubrelvy are about $1000/8 pills.

    I just got off the phone with my neurologist PA who are trying to get these drugs approved for insurance but don’t seem to be getting anywhere. She is trying hard and hasn’t given up, but it’s not looking promising.

    I can’t take any triptan drugs since I had a heart attack and those drugs are not allowed for heart disease patients.

    Oh well - as we used to say “onward through the fog”. ..


    1. Thank you so much for sharing your insights on this topic. I have heard of Methadone being an option for some - sometimes as a sub for those who have used long-term opioids. I like your guidance about using the pharmacist as a resource. Appreciate your wisdom on this. Warmly - Holly (team member)

    2. That is interesting to hear. Constipation is one of the few reported symptoms of Qulipta. Ironically, I've been trying it for three months and am having the opposite issue. It's been causing awful stomach upset- but I hear it's all about the gut. I join you in rushing to turn off the migraine treatment commercials that try to simplify this disease and related medications.
      You're not alone in asking the question "why is nothing working for me?" We've all been there at one time or another. I think part of the reason we feel this way is that we are made to feel (by our doctors and society) that we should be able to find some magic pill that will make our migraine condition go away. What we all know, down deep, is that there is no cure for migraine. So, solutions, and treatments- are not simple. For me, it's not about finding a cure- but coupling together treatments to seek some semblance of relief.
      Of course, the problem with this approach is precisely where we started. Most medications cause some side effect(s). So perhaps a medication will address this or that symptom, but perhaps it replaces it with another! Migraine - as a complex neurological condition is incredibly complicated - so it seems is the treatment. And what works for one person, rarely works for another. I currently take three different preventatives and have four rescue treatments lined up that help handle various symptoms or levels of severity to keep me out of the hospital. We each have to find our own way- but we can help each other along the way which is good to do because it is stressful just to think about.
      A huge part of the battle is having a good partnership with our migraine doctors. Do you have that? We can send you some referrals if you'd like a fresh set of eyes on your case.
      I'll also send you a link to the current list of treatments (preventative and rescue): https://migraine.com/treatment-options.
      But in truth you may simply need a break from trying. I go out of being exhausted from trying new treatments which I think is quite human. This resource speaks to how and why the process is so demanding: https://migraine.com/living-migraine/process-of-trying-new-treatments.
      You are not alone in any of this and we are here for you. Hope you'll stay in touch and continue to share what you're thinking and feeling. Warmly - Holly (team member)

  3. - Such a predicament you are in. I am so afraid as I age to have Medicare as my main health insurance. I hope you finally get approved for Ajovy or another CGRP. I am having the same issue. I can't get them to approve a CGRP. Fortunately, I can take triptans and they work okay, but having chronic migraines - as you know - we only get a limited amount monthly. I too have trialed Ubrelvy, Nurtec, and Emgality but they didn't help. Now I am fighting to get infusions of Yvepti to help with migraine disease. Just know you are not alone. We empathize with your current situation. I send you (and your PA) strength to continue fighting. I do hope you find a treatment that is affordable and effective. Thoughtfully, Rebecca (team member)

    1. Oh my goodness here we go. I started with Propranolol and Amitriptyline...no help. Tried oral Imitrex and another Triptan with no help. Tried a breakthrough nasal spray with no help. I'm now on Topamax, Ajovy, Botox and Imitrex injections for breakthrough. I also take butterbur, feverfew, vitamin D, vitamin K2, co-enzyme q10, omega 3, magnesium and I use my Cefaly device daily and still have daily migraines. They aren't as bad. Usually a 3-5 out of 10 on the pain scale but still wears you out. I'm still trying new things. I just ordered a new pillow that is highly rated for migraine sufferers. One day I'll find the magic combination I hope.


      1. Thank you for joining the conversation and sharing your input with us. Migraine is a complex neurological disease falling on a spectrum from mild to severely debilitating without a cure at the moment. Just like you, many of us are on a combination of medications, supplements, devices, complementary therapies and lifestyle modifications - I sure am!
        I hear you about pain wearing us out. Living with 3-5 level pain every day is exhausting. Is there any chance you're taking pain relievers and/or acute migraine medications (prescription or over-the-counter) more than 10 days a month? If so this may be contributing to the pain. All we want is to be pain free, however if we are taking these medications too frequently we can end up in a medication overuse headache (MOH) cycle formerly called rebound, which may make our attacks more difficult to treat and we can end up in a daily cycle of pain that may be hard to break. I got myself into this cycle with caffeine, believe it or not. Caffeine is a stimulant which can contribute to MOH. I was drinking about three cups of coffee a day and apparently I'm very sensitive to it. So it's one cup in the morning for me and I'm OK. Let me share our resources on MOH with you;
        1) https://migraine.com/headache-types/medication-overuse-rebound
        2) https://migraine.com/forums/how-break-medication-overuse
        I look forward to hearing more from you and I'm sending you pain free wishes, Nancy Harris Bonk, Patient Leader/Moderator (Team Member)

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