“Hellish” does not sufficiently describe the last couple days. 16 hours after the last infusion ended, I suddenly, shockingly developed a migraine aura. This is disconcerting because I have migraine without aura. The closest I’d come to an aura before Saturday is that I occasionally get faint flashes in my peripheral vision after a migraine attack is already well in progress. These are so minor and indistinct that my diagnosis is still migraine without aura. This time, bright, flashing lights filling my vision marked the start of increasingly severe auras that come on each time I eat. They aren’t just visual. I feel dizzy and like I’m going to faint, I become bereft and irritable, I see gray splotches and flashing lights and have tunnel vision. (Interestingly, of the four times this has happened, the aura has not been followed by other migraine symptoms.)
I know enough about migraine to know this is not an unusual aura (so I wasn’t worried I was having a stroke), but the sudden, dramatic change was scary. More terrifying were the thoughts that this would become my new normal, that the life I knew six months ago will never again be mine, that yet another treatment I tried would worsen my symptoms permanently, that I will never again feel like my migraines are manageable.
With the second aura, Sunday morning, I started methysergide, a migraine preventive my doctor prescribed for me to start after the infusions. Like DHE, methysergide is an ergot. Also like DHE, methysergide cannot be taken with triptans or Midrin. A 24-hour buffer between an ergot and triptans or Midrin is required. I had that because of the DHE infusions, so it seemed like a good time to start.
Things just got worse. I was still testing to see what my food reactions were, so I was eating more than the usual twice a day. Sunday, I had three auras, each with worse mood symptoms than the previous one. Those words are ridiculously insufficient to describe what I felt. The last aura left me sobbing, heartbroken and terrified. I was in some of the most intense grief I have ever endured. I felt like someone dear to me had died. I felt like my life was ending. This was the migraine talking and I knew it, but that didn’t stop the fear. Hart found me crumpled in a heap on the bedroom floor, wailing and keening. He held me until I calmed down enough to fall into an exhausted sleep.
It is Monday afternoon. After some reading, I have cobbled together a biological explanation for the new-to-me aura and mood changes. This has soothed my mind somewhat, but is based primarily on conjecture. I have a call into my doctor. I have an appointment with him in July. I swallowed the last methysergide I will ever take at 10 p.m. last night. I ate for the first time today an hour ago and the aura symptoms seem to be taking longer to develop than yesterday. If a migraine/aura hijacks my mood again, I will listen to podcasts and follow a guided meditation on fear. Tomorrow, I will return to two meals a day followed by Amerge and Midrin. I have a plan.
I am still scared, but am no longer frantic. Loss of the life I’ve come to know no longer feels imminent. I have steps in place to reduce the frequency of migraine attacks that I believe will also reduce their severity. It may or may not work. Instead of worrying, I’m trying to stay with what is, not what might be. While panicking last night, I tried to remind myself that I only know this moment and cannot know the future. This has been a useful practice the last few months, but wasn’t comforting last night. Today it is. To say I am calm is a lie, but I’m experiencing some peace of mind. I am focused, determined, resolute, committed, resilient, present.
I can do this.
Whatever “this” turns out to be.
22 thoughts on “Crisis, Fear, Heartbreak… and Peace of Mind?”
I’m so sorry to hear about the sudden changes and obstacles your facing. I hope that things calm down a bit soon for you.
What’s scary about migraines is how maybe what’s going on in your brain isn’t much different from a previous type of attack, but how the symptoms present can be drastically different.
Sending you a great big internet hug!
Thank you, Lisa. I can feel your love all the way across the country. You make a great point about how the same thing can produce such radically different symptoms in the same person. I expect many questions about migraine will not be answered in my lifetime, but I’m eager to learn everything that will be discovered.
As someone who’s headaches have also shaped his life your writings have given me comfort and solace for years. I know I don’t know you, but you feel dear to me all the same. I wish you the best Ms. Smyres, and thank you for this wonderful website!
Thank you so much, Caleb. I really appreciate the support and kind words. The worst of it didn’t last too long and I’m finally feeling almost back to normal. What a roller coaster this is.
Thinking of you, my friend.
Thank you, Katie B.
I am so sorry you are experiencing such scary side effects. I hope the auras are gone by now. Sending you many hugs!
I’m sending you gentle hugs also!
Life with the symptoms you/we already have is hard enough,and them pile on new ones.. .
Thanks, Sue. The worst didn’t linger beyond that day, thankfully.
I sometimes get a similar fear, it is like I become terrified, overwhelmed by emotions during some attacks. I attempt to talk my self down, tell myself that I am having a panic attack….I usually get this symptom while experiencing the numbness and tingling sensations. It is a terrifying state of mind.
I sympathize with you 🙂
Thanks for the support, Susan. I’m sorry you know what it’s like!
I’m so sorry this hasn’t worked as expected. You can do this. Hang in there.
Thanks, Kristina. I appreciate the reminder that I can do this. Some days it’s just so exhausting.
On a lighter note – podcasts help me too! They have become my savior and easiest migraine company over the years.
When I have to lay in the dark, but I can’t slow my mind down, can’t read, can’t watch tv, can’t talk, etc.; I can put an ice pack on my head and play a podcast VERY quietly.
It engages my mind, pulls me away from my swirling worries, teaches me amazing stuff, makes me laugh in the midst of crazy pain, and often relaxes me enough to help me fall asleep. I highly recommend them to anyone in our situation.
Kate, podcasts were my saving grace during The Worst Year of My Life. I listened to every RadioLab, This American Life, and Planet Money that had been released. Everything you say in your last paragraph is true for me, too.
Kerrie – I’ll be keeping you in my thoughts as you work on your plan and try to stay in the moment. That’s a tall order in the midst of pain, NEW symptoms, and the way migraine messes with our moods/thoughts.
This illness is totally insane. I’m so grateful for your site and a few other migraine discussion forums. VERY FEW people understand at all, if they haven’t had CHRONIC, life altering migraine.
I don’t manage to write often, but reading your blog is often a godsend for me. I dearly hope this current level of pain & symptoms doesn’t last much longer for you.
(not the same Kate as above – I wonder how many Kates you have?)
Thank you, Kate. I appreciate you thinking about me. It’s been a rough, oh, four months. But it helps to know I have people pulling for me.
(And you’re right, I do seem to have a lot of Kates in my online life!)
**wraps you in a giant internet hug and gently squeezes the stuffing out of you**
It’s terrifying when things get worse, and so hard to not know what the next day is going to bring. Know that many of us understand, and are here for you as you have been for us.
**hugs you some more**
Thank you, Marley! It was tough, but fortunately hasn’t been that bad since that night.
Hang in there!
Thanks, Kate. Fortunately that day was the worst of it. I still shudder to think about it.