Crisis, Fear, Heartbreak… and Peace of Mind?

lightning“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.


Migraine IV Cocktail, Day 2

infusion selfieThursday, June 11, 10 p.m.

Day 2 of the migraine IV cocktail was much smoother than the first. The nurse used an ultrasound to place the IV needle. It went in quickly and almost painlessly. We did the Benadryl first so I’d be sleepier by the time the DHE hit. That didn’t happen, but the DHE only caused slight nausea, so it didn’t matter. The DHE itself made me a little sleepy so I napped a bit. Overall, I had few side effects. I’m a bit groggy an hour after finishing the treatment and I don’t feel as bright as I do after using a triptan to stop an attack. Still, my pain is about a 1.5, so I’m not complaining.

Without the nausea to hold me back, I did the extra doses of DHE, for a total of four doses. I don’t feel any better (or worse) after the fourth than I did after the second, but I’m going for long-term improvement rather than immediate relief. (Recap: after a new treatment I tried in March made me feel worse, I could function if I took naratriptan (Amerge) and Midrin every time I ate. It worked fairly well, but meant I could only eat two meals a day and had no treatments for breakthrough migraines. And I still lost at least a couple hours to migraine each day and was still limited to 40 foods—those that were triggers before became even worse triggers and were unresponsive to drugs.) The infusion protocol I’m doing now is sometimes used to break migraine cycles or get people to revert from chronic to episodic migraine. I’m just trying to get back to where I could eat my 40 foods without triggering a migraine and don’t have to take naratriptan and Midrin twice a day every day. There’s a part of me that’s hoping the IV treatment will enable me to expand my diet even more, but I’m not holding my breath.

The irony is that when I tried the new treatment in March, my goal was to expand my diet beyond 40 foods. Now, if I can get back to having 40 foods that don’t trigger attacks, I’ll be thrilled. Also, two months of naratriptan and Midrin twice a day has made me less afraid of taking them when I choose to eat off the diet.

I fear I’m rambling. One more thing. This debacle has shown me that my food sensitivities are neurological in nature, which actually gives me a lot of hope.

Thanks again for the good wishes. I’ve loved reading all your comments here and on Twitter and Facebook.

Friday, June 12, 12:30 p.m.

The pain is still at a 2 today. It increased to 3 in the night, but that’s normal, since my pain is almost always worse when I’m lying down.

Significant tinnitus kept me awake last night. I always have tinnitus, but my brain can usually edit out the sound, even with earplugs in. Not last night. It seems to be less today, but it’s hard to tell since I’m not trying to sleep. Tinnitus is not a side effect of any of the drugs I’m getting, but I have a call into my doctor to see if it could be connected.

Since Wednesday evening, I’ve been able to eat teff, butter, milk, bell peppers, onion, carrots, chicken, figs, ginger tea, and mango without incident. This morning, I felt a little worse after goat’s milk and kiwi, but improved quickly. I’m very hopeful…


Migraine IV Cocktail, Day 1

Yesterday I headed to the infusion center with level 5 pain, little cognitive dysfunction, and only minor fatigue. This was better than I expected after eating two meals without naratriptan (Amerge) or Midrin, but worse than it would have been a few months ago. It wasn’t a bad way to go in for my first migraine IV cocktail

It took three tries to start the IV and I almost fainted after the first attempt. (Tip: if you know you’re going to have an IV, drink lots of water ahead of time. I normally do, but restricted my intake because I didn’t want to have to pee 12 times during the infusion. The nurse believes the lack of water is why this is the first time ever it’s been hard to start an IV in me.)

After the IV was started, the infusion went smoothly. We started with general hydration, then the steroid, then Benadryl, then Zofran, then one round of DHE followed by another round of Zofran and another round of DHE. Of all the meds, DHE had the only pronounced effect. The Benadryl didn’t make me sleepy, it just slowed me down and made forming words difficult. My friend said I was speaking very slowly. The DHE made me sleepy and caused nausea, even with a high dose of Zofran on board. I also got dizzy and woozy. My doctor said I could wait two hours after the second dose of DHE, then have another two doses. The catch? I couldn’t have any more Zofran. Since I can’t have ginger ale or saltines either, I declined.

I left with level 3 pain, which dropped to a 2 after I got home. I continued to be woozy, sleepy, and out of it for the rest of the evening. Eating dinner took the pain back up to a 3, but it didn’t get worse than that. Today, I’m still fuzzy-headed, and am clumsy and weak, but my pain didn’t worsen after eating.

Infusion #2 starts in an hour. I think I’ll do the Benadryl first in hopes that I will be sleepier when the DHE starts. I’m also taking homemade ginger tea. I think I’ll skip the third and fourth rounds of DHE today so my mother-in-law doesn’t have to wait with me for six hours, but will probably get them tomorrow, when Hart will be with me.

Thanks for the well wishes and tips! My fingers are crossed after a promising first day.


Migraine IV Cocktail

Wednesday, June 10, I start three days of infusions to try to break this migraine spell that started when I tried a new treatment in the spring. Three hours each day, I’ll receive DHE-45, Benadryl, a steroid, magnesium, and a nausea med in an IV cocktail. I’m told to expect nausea and sleepiness and, because I cannot take triptans or Midrin within 24 hours of receiving DHE, more migraine attacks. The hope is that the IV will return me to where my non-trigger foods stop triggering migraine attacks, but I have to eat twice more before my appointment tomorrow and can only take naproxen, ibuprofen, or acetaminophen in the meantime. Those migraine help reduce the pain, but won’t touch any of the other symptoms, so I’m dreading eating.

Surprisingly, I’ve never had this combination before. I’m looking forward to seeing if it helps, but am skeptical. I hope to be proven wrong. Now I’m trying to get the most recent 30 Things submissions posted and schedule some social media posts before I descend into migraine-land. My first infusion starts at 3 p.m. tomorrow. I’ll let you know how it goes as soon as I’m able. Wish me luck!


Working With Chronic Illness

working with chronic illness“How can I work?” is one of the hardest questions I get. My own experience hasn’t given me much advice to share, so I’ve been researching. Here are some resources for keeping a job you have and for finding a new flexible job. If you know of any others, please share in a comment.

If you already have a job and are trying to figure out how to make it work given your illness, Women, Work, and Autoimmune Disease: Keep Working Girlfriend is a great resource. Don’t let the women and autoimmune disease thing scare you off. The book has useful information for men and women with any chronic illness. Rosalind Joffe, the author, also has an informative blog.

If you’re looking for a job, here are some sites that post flexible, work-at-home, or freelance jobs. I’ve chosen only the sites that appear to be reputable, but do not have first-hand experience.

FlexJobs consistently gets rave reviews as a source for legitimate, usually professional, flexible job opportunities. Many are telecommuting positions, but the site also lists jobs with flexible hours or that are short-term engagements. There are more than 50 categories of jobs and Fortune 500 companies are on the roster of companies posting jobs on Flexjobs. The downside is a monthly fee required to search the job listings. While I have no personal experience with the site, reputable media sources say the fee is reasonable given the high quality jobs on the site.

Rat Race Rebellion screens work-at-home jobs and shares legitimate offerings in a daily email and on Facebook. Most jobs pay up to $20 and the number of jobs are limited each day. Work-at-home job offerings often seem like scams; Rat Race Rebellion claims to only post jobs that they have verified to be on the up and up.

You have many choices if you’re looking for freelance work. These are typically short-term or project-based jobs and do not offer benefits like health insurance. You’re best off poking around different sites to see if the opportunities would work for you. Sites run the gamut from focusing on niche professions to offering opportunities across a wide spectrum, some handle the payment processing and others don’t, some have freelance jobs you can pursue and others allow freelancers to post portfolios or resumes. Some freelance websites include:

Have you found a job you can do from home or that accommodates your need for flexible work? Have you tried any of these websites (with success or without)? Please leave a comment sharing your experience so readers can learn from one another.