Nothing Works - Hemiplegic Migraine
I am looking for some help on figuring out next steps in my treatment journey. At this point, I’ve tried CGRP inhibitors, beta blockers, anti convulsants, anti depressants, triptans, Botox, toradol, IV treatment, steroid packs, osteopathic manipulation, neuro physical therapy, dry needling, literally everything. Over 15 different prescriptions. It’s gotten to the point where I’m on day 14 of a migraine that led to paralysis in both legs (usually just occurs in one side), I’ve had a sharp skull-feeling pain on one side and my usual throbbing on the other, in addition to my numbness/tingling/weakness and nausea/vertigo. My neurologist has now stated that they “do not have any other options available” and has told me to just go to the ER to get more IV treatment.
I’ve been hating wicked vivid dream, intense sweating, night twitching (according to my boyfriend). My eczema flares up on my face and ears with my migraine.
Every medication I try will work for a little bit, but then it’s as if my body gets used to it and even upping the dose does nothing. I have zero side effects from taking anything. I’ve tried diet changes, exercise level changes, blue light glasses. Nothing helps.
Does anybody have any suggestions at all? Or maybe ideas of what sort of specialist I should see?? I’m wondering if my diagnosis of hemiplegic migraine is even right at this point. MRI came back clear to rule out MS.
My heart goes out to you,
. I can hear what a frustrating and challenging experience this has been for you, especially having exhausted so many types of treatments! It also sounds discouraging to have the doctor more or less say, "there's nothing else I can do". Is your neurologist a migraine specialist, per chance? I ask because we have had community members share that making a change to a migraine specialist neurologist made a difference in the level of knowledge the doctor has about migraine as well as treatments.
You might be interested in this article from one of our health leaders about this, https://migraine.com/living-migraine/neurologist-vs-specialist. As well as this article with five questions with a migraine expert, https://migraine.com/living-migraine/neurologist-interview-prevent-treat. It certainly doesn't hurt to get a second opinion, or even see another type of doctor, especially given the variety of your symptoms. Of course, only a doctor can tell you for sure, but it's a valid thought that you have that perhaps another doctor would do some further digging.
I really wish I could be more specific and helpful, but hopefully some of our community members can share their thoughts and ideas and tips with you as well.
Please, if you're comfortable, keep us updated. Sending you gentle hugs. -- Warmly, Christine (Team Member)
