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A new type of migraine with eye pain?

  • By Cait513

    So it’s hard to keep this short… I’m 32 years old, long hx of severe migraines, I was on Topamax with Midrin PRN from age 15 to about 22. I went off the Topamax in college as I was forgetting to take it, increasing the dopiness. I did okay for a while, then started getting some migraines and learned Midrin was no more. I started Maxalt but ended up back on Topamax at about 25 y/o. Historically, my migraines were in a band across the top of my head, throbbing and pulsing, worse with movement, light and sound sensitive, nauseous, an aura, and at times severe confusion (why I ended up on Topamax, my mom was nervous as I passed out a few times).

    At 29, I went back off Topamax as my spouse and I decided to start our family. Surprisingly, I didn’t get migraines, just some headaches here and there… nothing too bad. Obviously, I was completely elated, thinking I grew out of my migraines. I ended up having two miscarriages and then recently got severe preeclampsia at 19 weeks, leading to delivery at 23 weeks as I was very sick. During pregnancy, I got insane headaches which we attributed to the preeclampsia and migraine hx and was one reason why I delivered (along with kidney failure). After delivery, the migraines / headaches started to decrease and I thought things were good. Recently, I started the pill (first time ever, previously had an IUD), and OMG, it’s like a flip was switched in my brain and I have been getting horrible headaches every afternoon / evening. I went off the pill but the headaches haven’t gone away. I went to the doctor today and she stated they’re rebound headaches, but I only take the Maxalt when it’s a pain level 8 or higher, I’m pretty good at fighting through it. I do take advil and excedrin migraine, but not often as it barely touches migraine pain. She refused to prescribe Topamax, stating its too strong and I don’t need it and advised me to stop all OTC medications and Maxalt to prevent rebound headaches.

    These headaches are weird, they’re coming nearly daily, in the afternoon / evening and only on my right side. My right eye gets really sore and sometimes I hear whooshing / ringing in my right ear. I have the blurry vision and nausea, but otherwise they’re different from my usual migraine. I work really, really hard to be healthy and stay off medications. I left her office feeling like a drug seeker, but I only mentioned Topamax since I know it works for me. She referred me to a neurologist, but said the neuro will say the same thing… Has anyone ever had this and had it not been rebound headaches? I feel like I try so hard, suffer through so much, and my body is continuing to fail me and now my doctor (she’s newer) is not even taking me seriously and treating me like a crazy person 🙁 I left, telling her to read through my chart for the last year… my body does not prescribe to the typical rules and medicine is an art, not a perfect science, there are no definitive answers. Any advice is greatly appreciated!

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  • By Nancy Harris Bonk Moderator

    Hi Cait513,

    Thank you for sharing your journey with us. I’m sorry you’ve seen an uptick in migraine attack pain – I understand how frustrating that is.

    I would encourage you to seek out help from an expert doctor – a migraine and headache disorder specialist. These doctors are different from neurologists in that they are board certified in headache medicine, which is different than being certified in neurology. I’m currently working with my 5th board certified expert and think I may be getting somewhere. You can read more about how these expert doctors are different and how to find one; http://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/really-find-headache-specialist/.

    There is something called intracranial hypertension that has some of the symptoms you’ve mentioned. Let me share that information with you so you can share it with your doctor; https://migraine.com/blog/migraine-comorbidities-idiopathic-intracranial-hypertension/.

    I hope this helps!
    Nancy

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