#MigraineComorbidity: Living with Multiple Conditions

Lately, I’ve been collecting diagnoses: migraine-associated vertigo, panic disorder, MTHFR deficiency, PTSD, IBS, seropositive RA … The list just keeps growing. Migraine, it seems, is a disease that gets along well with others — or at least enjoys bringing them along for the ride. (I, for one, would be happy to let a couple of these guys off at the next stop, but no one’s asking me.)

Anyone living for long with chronic migraine knows that comorbidities occur frequently. However, I was surprised to learn — until I started my own personal collection — just how many there are. For instance, while I knew that migraine with aura was associated with vertigo, MTHFR deficiency, anxiety, and PTSD, I had less knowledge of the link between migraine and IBS and no knowledge at all of the link between migraine and Rheumatoid Arthritis. While knowing about something doesn’t necessarily change the prevalence of it, I think it would have helped to be prepared.

Juggling multiple conditions isn’t easy, especially when the medications used to treat one disease (e.g. RA) tend to exacerbate another (e.g. migraine). Doing so while working, raising a family, and nurturing a strong marriage is even harder. But I’m not one to let the difficulty of a task faze me.

I started my migraine journey with the determination to figure out how to live the best, most joyful life possible, and I have no intention of stopping now. The journey may be a little rockier, and slightly more precarious, than I had anticipated, but it is the journey I’m on. I fully intend to find the magic moments and silver linings, and I’ll continue to write and share about my progress (the good and the bad) as I go.

Chasing sunshine

 

Moving + Holidays = Not a Great Idea

Living with chronic illness uses up a lot of spoons. As does moving. As do the holidays.

Putting them all together then isn’t a good idea.

And yet I did it anyway.

I do a lot of things anyway (like saying “yes” to “one more” project when my plate is already incredibly full, going to concerts, drinking beer, and staying up way too late on occasion) because life is too short to let a couple of diseases run how I live it, but this one may not have been my best call. Moving at Christmas is simply not an easy task. It takes a lot of spoons.

Calling to set up new services. Calling to cancel old ones. Packing. Reserving, picking up, loading, unloading, cleaning, and returning the U-Haul. Unpacking. Setting up. Decorating the tree, twice. Buying a fridge and food to fill it. Making said food.

It’s a lot of spoons, y’all. Just. A lot. 

Add the fact that both of my kids were out of school and underfoot in a new neighborhood with no friends, and I believe I must have been temporarily out of mind to agree to such a thing. Surely.

I did take ten days off of work to accomplish the task, which made me optimistically believe I could survive the month of December without triggering a migraine flare. Of course, that didn’t happen. I ran out of spoons on about the third day and spent a great deal of my vacation trying to do everything I needed to do while feeling nauseous, dizzy, and like I wanted to bash my head in with whatever was close at hand.

Thankfully, this has passed. We’re settled now, and things — including my brain — are starting to regain some sense of balance. Mostly.

One of the things that happen when I experience a severe migraine flare is that my right arm acts up. It gets weaker and sometimes chooses to ignore the tasks my brain assigns to it. It also hurts.

Thankfully, I found something that helps the nerve pain: the Salonpas products. A while back, the company sent me some free samples for my review on this blog (full disclosure). I don’t generally put too much stock into such items because I’ve been duly unimpressed with almost as many free trials as I’ve been given, but these were different. These — especially the lidocaine cream and patches — worked.

I’m still using the products because my migraine hasn’t completely returned to baseline yet, and my hand and arm are still wreaking havoc on my ability to type, cook, and bathe. Since I also gave a sample to a relative with fibromyalgia (who says it’s helping her, too) and I’m almost out, I’ll be ordering some soon to add to my migraine toolkit. You know, for when I — inevitably — run out of spoons.

Migraine and My New Love/Hate Relationship with Flying

Another_Airplane!_(4676723312)
Attribution: Photographs by xlibber

Like most ENFPs, I love to travel. The novelty of a new place (with its new sights, new people, new smells, and new adventures) never gets old. Yes, every big city is similar in many ways to every other big city (just as most small towns are similar in certain ways), but the differences between them – no matter how small – thrill me. I am happiest, in fact, when I have a trip scheduled for sometime in the next six months. As long as I know I am going somewhere soon, the normalcy of my everyday routine doesn’t get me down.

You can understand my disappointment, then, when I realized that I may soon have to change either the frequency at which I travel or the way in which I do it. Flying, it turns out, makes me dizzy, dizzy, dizzy. I’m talking days of dizziness. Weeks of constant vertigo. And it took me until this year to realize it.

Earlier this year, I flew to Philadelphia for a four-day trip. Though I was slightly dizzy the day we arrived, the vertigo quickly dissipated and I had a wonderful time at my conference and touring the city. Once I arrived home, however, I had the worst vertigo of my life, and it lasted for three weeks. 

Once it eased, I wrote it off as an anomaly. (As I am wont to do with most of my weird migraine symptoms.) Until, that is, I traveled to San Diego last week for another conference.

Once again, the flight there wasn’t too big of a problem. Though I almost passed out from vertigo at one point during the first day,  a two-hour lunch break in bed restored me for the rest of the trip. Arriving home, however, was an entirely different matter.

It’s been five days, and the room is still spinning. I ran into a couch on the way to the kitchen this morning, and I had to cancel a doctors appointment because I couldn’t trust myself to drive. I’ve been working primarily in bed instead of at my desk all week, and I haven’t been to the gym once.

I’m also about to leave on another trip, this time for five days to Florida.

I haven’t had two long-distance trips so close together since my vertigo worsened, and I’m truly wondering how it will go. Apparently, vertigo after flying isn’t uncommon for those of us with vestibular migraine and/or migraine associated vertigo, but I’d certainly never heard of it before. Now, all I can do is refill my Valium (which my neurologist gave me for vestibular symptoms) and hope for the best. Oh, and make a promise to myself to never again schedule back-to-back air travel, of course.

 

 

 

Vacation Lessons and Wellness Wednesday

PaloDurobackyardview

I recently spent a week with my husband doing little but looking at this view of the Palo Duro Canyon from our rented patio, stargazing from the outdoor hot tub, and relaxing. We unplugged completely. No news. No work. No social media. No other people.

It was heaven, and I didn’t have a severe migraine attack the entire time we were there.

The low-level pain, nausea, and vertigo of the ongoing disease are almost always present, but that’s where they stayed. At low levels, in the background. No major attacks. No big flares. It was the most peace I’ve had in months.

When we came back, I immediately had to do what we all have to do when we get back from vacation: I had to make up for being away. My first day back at work was a “regular” Monday. I clocked 13 hours, made my family three meals (plus snacks), cleaned here and there, served as partial entertainment for a four-year-old boy, and kept my ears tuned to the TV and social media for updates on Harvey, my city, our (flooding) surrounding areas, and our friends (many of whom were evacuating.)

By 1 p.m., my pain level and other symptoms had increased with a vengeance.

While I expected this, it still got me thinking. What can I do to reclaim a little of that Palo-Duro peace for myself during the regular week? How can I take care of myself, and my health, like I did over the course of those blessed and restful days?

I recently read a post from another writer talking about reclaiming Wellness Wednesday as a day for health. She said she was going to spend each Wednesday, taking the entire day off and nurturing her body and her mind. This idea intrigues me.

I’m not sure I’m capable of making that kind of commitment right now, as I have so many other commitments already. But I’d like to try. At the very least, it will remind me that I need to prioritize myself and my health just as much as I prioritize everything else. We women, especially those of us who are moms with chronic illness, tend to need that reminder.

What about you? Do you do anything on a regular basis to prioritize your well-being and your health? What is it? 

Irritability, Migraine, and Practicing Patience while Parenting

I always wanted to be one of those mothers who never yells at her kids. The sweet-faced mother who speaks in low whispers to get attention and never loses her patience. The one who gets results by leaning in close and repeating herself once. Just the once.

Unfortunately, I’m not.

Patience is not my strong suit. It never was. And, though my children have definitely granted me more than I ever had before they came along, it never seems to be enough. Especially when I’m experiencing a migraine attack.

In the first stages of my migraine attacks, I am irritable beyond measure. Everything annoys me. Everything is too loud, too bright, too intense, too much. And that feeling extends, no matter how hard I try to keep it in its own box, to my kids.

To my delightful, gorgeous children whom I love with my entire self. My imaginative, creative kids who create stories and games that impress me even when they’re driving me bonkers. Even when they won’t listen no matter what I say until someone, usually me, starts to yell.

I hate yelling, but it works. Sometimes, it’s the only things that works, and when I’m in the midst of a migraine attack from hell I simply do not have the resources to try something new. Something that likely requires more patience than I am blessed with at even my best moments. So I’ve done the next best thing I know––worked to rein in the irritability that comes with my attacks.

Because, usually, I’m a pretty easy-going mom. I have rules, but there aren’t many of them and they make sense to both of my kids. Following them isn’t difficult. Most of the time, we have a fairly harmonious household, even with a teenager, a preschooler, a step-dad with a 50+ hour work week, and a work-at-home mom with three jobs. Usually, that is, unless migraine irritability rears its ugly head and wreaks havoc on the peaceful environment I’ve worked so hard to create and maintain.

I recognize this now. So I breathe when I realize I’ve been annoyed by two different things in three minutes or by both my children in the span of five. I count to five, and I tune into my body, feeling for other symptoms of migraine. Almost always, I find them.

And when I do, if I do, I take a break.

I explain to my kids that I’m getting a migraine, and I walk away. I take a bath or go to my room. Breathe some more. Do a few gentle stretches. Let my adrenaline and anxiety taper down.

Then I return to my family. A little less stressed, a little less irritable. Still with a migraine attack, but with a few more resources to deal with it, including, usually, a little more patience.

#Weaning and #Migraine – Treatment Update

My little man will be 19 months old on the 12th, and with his increasing independence comes a number of changes, both for him and for me.

I’ve been practicing baby-led feeding and baby-led weaning, which means we’ve had fewer struggles than we might otherwise have had along our journey but it also means the weaning process is taking significantly longer than it otherwise might. That being said, my son took the lead on night weaning about four months ago, and I am happy to report that we are now officially done with the 2 a.m. (and 3 a.m. and 4 a.m.) feedings. In fact, we’re down to just two nursing sessions a day: one before nap and one before bed. Neither lasts longer than 15 minutes, and I’m hoping to drop both soon. While this is really good news for me (I can’t wait to have my body to myself again), it is also not so good news.

Hormones change and fluctuate a lot during pregnancy and breastfeeding. They also change when we begin to wean, and again when we finally drop that final nursing session. For some women, this isn’t a super big deal. I’m not one of those women.

As I shared on this blog, my migraines were terrible during the first half or more of my pregnancy. They eased up a little during the third trimester and were largely absent during those first few postpartum months. Then, they kicked in again, and as we’ve progressed through the postpartum period and into the toddler years, they’ve gotten worse. This is due in part to the hot and ever-changing Texas weather and in part to weaning.

Weaning related migraines are nothing new. If you search the internet, you’ll find a large number of women discussing how much worse their migraines got when they stopped breastfeeding. Somehow, though, it was something I wasn’t entirely prepared to experience.

Unfortunately my expectations had little to no effect on reality.

The last eight weeks have brought a migraine more days than not. While I have a lot of non-prescription tools for coping with migraine and a supportive family, it’s become necessary to go back on medication. Thankfully, Kellymom.com, a wonderful resource for nursing mothers and their doctors (my neurologist even references this site), offers a pretty in-depth look at almost all of the common migraine and pain medications. Taking both the website’s information into account and the age of my son (babies older than 3 months usually aren’t as affected by medication in mothers’ milk as much as younger babies), my neurologist and I have crafted a new plan. For those who wonder:

  • I’ve started amitriptyline as a preventative. As of now, I’m only on 10 mg once a day, but I’m working myself up to 30 mg. We’ll reevaluate my progress when I go back for a follow-up at the end of the month. I’m still taking 400mg of Magnesium as a preventative as well.
  • I have prescriptions for a tablet version of Prodin for use as an abortive. I also have a few samples of a Zomig nasal spray, though I haven’t used it yet. (Triptans generally don’t work for me, and I figured I would wait to try this until I’m completely done weaning, just because it makes me more comfortable. Despite the fact that I’d heard somewhere that triptans were no-nos when breastfeeding, Kellymom.com actually says Zomig is “moderately safe.”)
  • I also have Fioricet and Promethazine tablets and a nasal spray version of Toradol for use as rescues.

I haven’t used most of these medications yet, as I try to avoid medications as much as possible. I have taken two of the Fioricet tablets, but so far I’ve experienced little relief. I’m hoping the amitriptyline will bring help. If it doesn’t, I believe we’re going to try a calcium channel blocker, which is one of the only preventatives I haven’t tried yet. If that doesn’t work, we’ll wait until my son has decided to completely give up nursing and then try a few other things. I trust that eventually either time or a medication will help.

An Open Letter to My Pre-Migraine Self #migraine #chronicillness

You are about to go through hell. In more ways than one.

You are going to spend your days in bed, squeezing your eyes together in pain because even the covers hurt. You are going to be too dizzy to stand, too nauseated to eat.

You are going to take pills that prevent you from eating. You are going to take pills that cause you to eat. You are going to lose too much weight. You are going to gain weight. You are going to drink too much. You are not going to be able to drink at all.

You are going to see pink dots circle around each other on your ceiling, pulsing in time to your heartbeat. You are going to experience moments when you feel larger than the houses you are driving past.

You are going to doubt your sanity.

You are going to get shots in the nerves of your neck, and feel more agony than you could have ever imagined.

You are going to lose your confidence in yourself.

You are going to lose yourself.

You are going to get depressed and anxious. You are going to wonder if you can take it, if living like this is worth it.

Let me tell you this: It is.

Yes, you are going to suffer. Yes, you are going to run up against the edges of what you can take, emotionally, physically, mentally. But, guess what? You are going to arise stronger, more authentically you.

Don’t get me wrong; this is going to take time. But, it will happen. Trust me. So, don’t worry about the future. Instead, do me a favor:

Go dancing, all night. To loud, thumping music that makes you throw back your head in laughter and delight.

Stay up until 3 a.m. talking and making love. Do it again the next day. And, the next.

Find out when all your favorite bands will be in town, and go see them. Stand near the front, where the smokers and dancers are, with a large pint of beer in your hand and a smile on your face.

Run, as fast and as far as you want to. Take hours-long walks in the summer sun. Spend all day hiking by the creek, and swimming at Barton Springs.

Take overnight trips to exotic destinations. Carry nothing but a small purse with you.

Eat bowl after bowl of queso, and slice after slice of four-cheese pizza. Eat as much of your favorite foods as you like.

Read all night long, even if you have to get up early to work.

Do these things.

Trust me. Do these things now, while you can, so you can enjoy the memories you make when you can do them no longer.