Migrainous Musings

I have been struggling with a rough stretch of status migrainosus. When I'm thinking a little more clearly, I know that it will end... but when the pain levels are unbearable and the insomnia from treatment is added to the mix, night can bring out all kinds of demons (anxiety, depression, PTSD). In Pain has an Element of Blank, I wrote about the timelessness and dominance of pain, so this is something I've been facing and working on throughout the last 10 years.

This is part of my journey. Please excuse the raw, unfinished, unedited migrainous night musings / ramblings of a brain in pain; but I thought they might be worth sharing.

All alone, in the dark, is where the true torture happens. The incessant pain is magnified by the lies that it tells. When will it end feels like a question not worth asking. The pain decides without your consent.

Mind racing. Heart thumping, Head pounding, Body screaming.

The light of hope seems so soft and dim, but it's what holds us together when the night seems to never end.

Day in and day out, the pain becomes an unwelcome but constant companion. Sometimes it's there lurking in the shadows, sometimes it walks right along side of us, and sometimes it completely overtakes us.

Regardless of how wonderful a support network we have, there are moments that simply have to be faced alone. In the dead of night, when everyone is sleeping, the pain, anxiety, and isolation make their move.

Photo by Travis Bozeman on Unsplash

I've written several Haikus (and Tankas) previously in my journey, here and here. Sometimes it helps to try to focus my mind on thinking or writing in a specific way.

Darkness breeds darkness.
Incessant pain tells us lies.

We must seek the light.

We may feel alone,

But we never truly are.

Reach out and have faith.

Stark desert. Dark night.

Looking for a small reprieve

From the pain and fight.

“Be patient and tough; someday this pain will be useful to you.” - Ovid

Status Migrainosus: A Difficult Week

I'll warn you (and apologize) up-front, this post may be kind choppy...

This has been one of the worst pain weeks I've had in a long time. I've taken migraine and pain meds (maxed out) and rested a lot. My doctor prescribed a round of corticosteroids, which hasn't seemed to offer much relief.

Status migrainosus is basically a severe intensity migraine that is unremitting for more than 72 hours. Now, I have some degree of head pain every, single day. I have chronic migraine, which means that I have migraines 15+ days per month. And, yet, I get these status migraines that I seem to have no way to prepare for. I know, intellectually, that at some point the pain will break. But, it doesn't seem like it, in the midst of the pain, especially when nothing (meds, coping skills, etc) is offering any relief.

Sleep Disturbance
My sleep pattern is completely insane. Since this horrible stretch of migraine pain began, my hours slept per day (can't say per night because some nights were no sleep, but a nap during the day) have been:

• 8.25 hours
• 3.50 hours
• 9.00 hours
• 3.25 hours
• 17.00 hours
• 0.00 hours
• 15.75 hours

Talk about out of whack! Hypersomnia intermixed with insomnia... quite a toxic combination.

Memory / Processing Problems

Early this week (day 2 of severe pain), my memory was so bad... it was scary! My mind wasn't working at all - I would forget what I was saying, mid-sentence. My difficulties with memory and processing hasn't been that bad in a long time, and it reminded me of some of the struggles I had following my car accident. Strangely, though, I was inspired (and somehow able) to write a blog post, start to finish - When Your Pain is Invisible: You Look So Good. Honestly, I sometimes have more inspiration to write, when I'm at my low (not lowest) points... in the darkness... it's weird.

Irritability

I know that I've been extremely irritable, and not doing a very good job of filtering it. I've found myself snapping easily. It seems uncontrollable, out of my hands. I'm easily frustrated and/or annoyed by the dog, my husband, anything, everything, nothing...

Visual Disturbances

The visual issues I've faced with this migraine attack have been expansive. Aura, blurry vision, trouble focusing, see flashing lights (in all different lighting, from a dark room to bright outside).

And More...

If all of that wasn't enough, there have been so many other symptoms (many more than I'd like to write here)... aphasia, allodynia, hypersensitivity, vertigo, anxiety, depression, fatigue, and the list goes on...

Oh Yeah, Head Pain

If you noticed, I didn't even really mention the incessant head pain, and the neck and back stiffness and pain. The horrendous and unceasing nature of the pain has been paramount in my week... I can't seem to find relief.

Grateful

I will say, though, that I'm grateful to have been able to spend a little time out at a friend's (wedding) couples shower Saturday evening, and with my Mom to visit my grandmother in the hospital Sunday evening. I can't say that it didn't take a lot out of me, or even that it really even distracted me from the pain, but I'm glad that I could be there for those that I care about.

The Battle for Sleep Continues

I've written about my My Ongoing Battle of Sleep before. Unfortunately, the battle continues.

My sleep has been a huge obstacle and struggle lately, even moreso than normal... which is really saying something. I'm not sure exactly why, though I know that pain, anxiety, depression, and some of my as-needed migraine meds all play a role.

Making things more frustrating, I can be dozing off on the sofa (to the point that I can't keep my eyes open)... but, by the time I get to the bed, I struggle to get to sleep.

It's been worsening quite a bit over the past month. I'm almost on an opposite sleep schedule - getting to sleep around the time most people are getting up for the day, and sleeping into the afternoon.

I've tried different meds, essential oils, hot showers, hot/cold packs, a lot of the typical "sleep hygiene" ideas, etc. I keep trying to go to bed at a more normal time, but I sometimes find myself so restless that I could hardly stand it. So, I'm trying to get my body back on track... it's a wearisome journey.

Weary

I've been so weary.

I'm tired of counting pills to make sure I can at least partially treat my migraines until I can get my next prescription. I'm tired of missing family events, including my now 6-week old nephew, Evan. I'm tired of having to reschedule and/or cancel plans. I'm tired of the often excruciating pain. I'm tired of feeling so down. I'm tired of struggling to eat, which is a daily battle. I'm tired of the anxiety and subsequent feelings of helplessness regarding some family stuff going on.

I'm just tired.

Holiday Update & Triggers

Well, I've clearly not kept up with this month's blogging challenge. :-/ I am trying to get several posts finished up, so I can publish them here soon - it's just taking me longer to do anything right now.

I've been dealing with some migraine triggers - some controllable (time with family), some not (weather), and some in-between (sleep). I think I did well avoiding food / drink triggers, even over the holidays.

Weather - The weather has been a crazy roller coaster, and the frequent temperature drops have been difficult for my head pain.

Sleep - I've been having a different kind of struggle with sleep lately. Sometimes I wake up early and can't get back to sleep, and sometimes I sleep into the afternoon. Sometimes I'm up late, and sometimes I can hardly make it through the evening awake. This past weekend, for example, I slept a lot. Sunday, I was only awake for about 8 of the 24 hours, and I still felt so tired.

Family - No doubt, I've pushed myself quite a lot over the past few weeks, and I've been paying the price for doing so. But, I'm grateful for getting to visit with my sister (who was in town for a week), and my family (immediate and extended).

I've been trying my best to stay in the present moment, and to enjoy and be grateful for the time I have been able to spend time with loved ones.

This post was written as part of the National Health Blog Posting Month (NHBPM). Other bloggers will share their posts on this FB page.

My Ongoing Battle of Sleep

My life seems like an ongoing battle. While I'm awake, I battle to balance life; face the struggles, limitations, and fears of life with chronic illness; and strive to live in the present moment. While I'm asleep... well, I don't feel like that's been happening much, especially lately.

I've had sleeping difficulties for as long as I can remember. However, chronic pain adds a whole new dimension to the struggle. I seem to go through varying phases of sleeping difficulty... usually from bad to horrible. The sleep problems I have can be any combination of these:

• Mind going / racing
• Trouble getting to sleep
• Waking up through the night
• Disrupted sleep
• Stressful dreams and/or nightmares

Resulting in... NO REST!

It's been especially bad lately, and I'm not sure why. I've tried Melatonin before, and it actually made me wake up more often throughout the night.

I've tried Ambien, as well as Ambien CR. The CR usually helps me to sleep, but I've recently had additional, scary symptoms with it. Even when I took it (occasionally) in college, I might do say or do things between taking the medicine and getting to sleep, and have no recollection of it (nothing like sleep-driving... but I learned to take precautions like keeping any technology away from me, so I wouldn't unknowingly call/email and say things I didn't mean). Now, though, I get really paranoid and jumpy. I normally don't really remember what happened, or things are at least very foggy. But, it kinda scares Jeremy... and me, in the moment. I wake up anytime I think I hear something, and I even freaked out the other night at wind outside and my hair brushing up against my arm.

My doctor has tried using meds to help with my chronic migraines, as well as my sleep (trying to kill two birds with one stone); but nothing has helped. He's most recently had me trying Benedryl, which was in the hopes of helping the sleep situation and my bad seasonal allergies. But, I've stopped taking it because I was increasingly having trouble getting to sleep.

I've tried the "sleep hygiene" rules found in articles, and they're completely unhelpful. If I just lay in my dark bedroom, doing absolutely nothing (no distractions like technology or anything), I still don't drift blissfully into sleep, like the articles suggest. No! I lay there feeling tortured by my mind and body. I'm actually so thankful for my Kindle and my iPhone. I never wanted to have any kind of technology in the bedroom, but it's actually been such a life saver for me. It gives me something to do, while I wait to fall asleep (or pass out) out of exhaustion and/or boredom. Not ideal, but necessary right now.

I'm to the point of desperation now. :( I haven't been able to get to sleep until at least 3:30 or 4am (regardless of when I start trying to go to sleep), most nights. I keep having horrible dreams and nightmares that have me waking up in a panic. And, I often wake up frequently through the night. It's worsening my daily headaches and migraines, and the anxiety around bedtime and sleep is getting out of control (vicious cycle). I'm in bed so late in the morning because I'm desperately trying to get some rest... it's not that I'm lazy! I'm sooo stinkin' exhausted, yet sleep continues to elude me.

I've been trying to hold on to my faith and trust in the mercy, love, peace, and hope that our Savior offers us... so that I can live the best life possible, in the circumstances I find myself in... regardless of how miserable things are at the moment.

"Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light." (Matthew 11:28-30)

"Do you not know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." (Isaiah 40:28-31)

This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).

Stream of Consciousness Day

Today's challenge is to: start with the sentence “_______” - just write, don’t stop, don’t edit. Post!

"I'ts about what’s going on in your head in this exact moment. What are you thinking/feeling/seeing/hearing? How do you feel? What’s popping into your head as you take in your surroundings? What conversations or interactions keep running through your mind? Stream of consciousness is about not suppressing these thoughts but letting them flow onto the page, with or without punctuation, without stopping to think about whether you’d chosen the right word or phrased something the right way."

So, here we go... I'm wondering why I can't sleep. Why I'm so anxious. Why things are getting worse. I've been having increasing trouble getting to sleep at night, often taking several hours to fall asleep (even after taking night meds)... and, now, I'm having increasing anxiety about even laying down in bed to try to go to sleep. I've also been having bad nightmares, several of which have had me waking up shaking and upset. I don't know what's causing all of this. I've had problems with sleep before (sometimes almost identical to what I'm experiencing now)... for longer than I care to remember... but, I don't understand this round of stuff.

I'm also feeling anxious about my head pain. I've actually had a fairly good few days, actually this whole week, so far. I've been able to keep the head pain from worsening, even though there have been ups and downs each day. Keeping my head to a 5-6 (on a 10-point scale) has been great this week. Some days, I was able to keep the head pain there, as well as get some things done around the apartment... other days, I had to park myself on the couch and just watch TV / do nothing, in order to keep the pain from worsening. But, I'm proud of myself for the things that I've been able to accomplish this week.

The problem is that these streaks of better days never last. The pain always returns, and it scares me. I don't want to let the fear take over because I'm trying to enjoy the bit of relief that I get, whenever I get it. I still try to pace myself, but I'm also trying to stay in the moment and enjoy feeling even just a little bit better. But, my mind wanders... and the fear comes over me like a wave crashing onto rocks. I don't want to be afraid, but it's so hard not to, when pain has become my "normal."

Right now, I think I'm most afraid of ruining this weekend. Jeremy and I are going to Austin this weekend. We're going to visit / stay with family, and attend a friend's wedding. I want so badly to be able to have a "normal" weekend... at least for my dear husband. My migraines have interfered with so many special events - I've had to miss close friend's weddings, family get-togethers, etc. I hate having to miss these things, and I hate even more when it interferes with one of the few activities / events that Jeremy really wants to attend. I know that he'll be alright and won't blame me or make me feel guilty, if we miss it... but I want to be there for him. He's so good at comforting me when I have to miss important events... I just don't want him to have to be in that position.

Well, I don't know if any of this is made any sense, but there's my 15 minutes of unedited free-writing today. Stream of consciousness day - welcome to the scattered mind of a chronic Migraineur!

This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).

I Will... in 2012

I don't like making new year's resolutions. But, I think the new year is as good a time as any to take some time to pause for a moment... reviewing the previous year's ups and downs, and then to re-prioritize and commit to things you can do to improve your life in the coming year.

• I will do my daily journaling devotional - so far this has been very good for me. The devotional I have is very short per day, but it allows me to reflect on it and then journal about it. It's an easy step to get myself back into reading and writing more.
• I will express more gratitude - to God, others, and myself.
• I will develop a healthy sleep schedule - getting up and going to bed closer to the same times (and more reasonable) daily.
• I will write more frequently - for my blog, my journal, and my other writing endeavors.
• I will incorporate exercise into my daily routine, even if it's only stretching.
• I will maintain a healthy diet and cook more frequently - including trying new recipes.
• I will celebrate (rather than discount) the goals I reach and achievements I make, regardless of how "large or small" they are.
• I will continue to seek out the best treatment possible to help me manage my chronic pain.
• I will schedule a digital sabbatical (even if only for an hour or two at a time).
• I will use my "Something for Jesus to Do" (SFJTD) box to write out things that I need to turn over to God - once I write it out and place it into the box, it is out of my hands (just as I must let go of the worry to God, the piece of paper is to be completely released... I throw them away or burn them, as the box fills... without re-reading what I'd written).
• I will continue to find ways of being kinder to myself... learning coping strategies, treating myself with the same kindness I treat others, avoiding toxic relationships and disrespectful people, accepting that some days will be better than others (but keeping faith that the good days will come).
• I will apologize less for things that are out of my control - I'm really bad about this, especially with my husband.

But, most of all... I will continue to seek God with all of my heart (Jeremiah 29:11-13).

Kari Bailey at Patient Endurance poses these questions, as one pauses to consider life changes and priorities:

“What do you want your life to stand for this year? What purpose do you want to fulfill? What is most important in your life right now? Who and what are you going to give the majority of your time to this year? What is your vision for your immediate future? What are you hoping and dreaming God will do for you and your family this year? What do you want changed in your life? Where do you want to be this time next year?"

I love these questions, but they definitely call for more thought and attention than I have to give right now. I'm going to write them down, respond to each question, and then honestly assess my answers.

Blessings!

Reducing Holiday-Related Migraine Triggers

The theme for the December 2011 Headache & Migraine Disease Blog Carnival is: "Reducing Holiday-Related Migraine Triggers: Share your best advice, tips, and tricks for minimizing triggers while still fully enjoying the holiday season."

I've been wanting to write about holidays and migraines, so this gives me a great opportunity to share and to learn some tips from others. There's a great post that I think approaches this topic so well - Surviving the Holidays: Give yourself the G.I.F.T. of a stress-free holiday - Guilt must go. Importance rules. Family matters. Think ahead.

Since my main challenge is dealing with chronic migraines, I'd like to write about the holiday season... how there are a million different triggers that can present themselves... all in just a matter of weeks... and all wrapped in tinsel and twinkling lights.

First, let's take a look at 3 triggers that we have the ability to manage / control:  food, sleep, and stress.

FOOD
The holidays often involve get-togethers and parties, many of which will have foods / drinks that might be migraine triggers. Sometimes, you simply don't know what ingredients were used to prepare the foods provided at the event. Though there is no universal list of migraine triggers, there are foods / drinks that have been found to be common food triggers.

Tips: Try to keep your eating schedule - eat small meals throughout the day, make sure not to go too long without eating (don't skip meals). Eat around the same time each day, and keep your food portions consistent. Going all day with little to eat and then splurging at an evening dinner can trigger a migraine. And, if you're going to a party or dinner, offer to bring a dish... at least then you know that you'll be able to eat at least one thing there.

SLEEP
Just as holiday events can affect your eating schedule, it can also lead to disruption in one's sleep routine / pattern. We may find ourselves staying up later, sleeping in later, napping, etc...

Tips: Try to keep your sleep pattern - go to bed and get up at the same time each day, and refrain from naps.

STRESS
The holiday season increases stress for everyone, regardless of whether someone has a chronic illness or not. But, for those living with chronic pain, there is stress in: not knowing whether or not you'll be able to keep plans with others, missing out on special events, being around crowds of people, spending precious energy and money on gifts, etc. While stress may not be a migraine trigger, it certainly renders the individual more susceptible to his / her triggers... so, it's important to try to reduce stress levels.

Tips: Begin holiday planning and preparation a month or two in advance. That way, you can get a little done each week, and you'll still be "on schedule," if you end up having some bad days. Set aside time for yourself - take frequent breaks and retreat to a cool, dark, quiet room as you need to. It's also important to monitor how you're feeling, and take care of yourself.

Now, let's take a look at 3 triggers that we have a lower (or no) ability to control:  environment, travel, and weather.

ENVIRONMENT
There are some environmental factors that simply cannot be controlled (see WEATHER, below). But, the holidays introduce another set of environments that we often have very little control over. Stores have fluorescent lights, different smells, a lot of people, etc... Holiday parties / events have smells, noise, lights, foods, drinks, crowds... a lot that we can't really control. Often there is no way to escape these triggers or the migraines that they generate.

Tips: If you're going to a party or dinner at someone else's house, offer to bring a dish. If you know the person well enough, perhaps you can ask them if there's a cool, dark, quiet room that you could escape to, if you need to. You may also ask him / her to not burn candles that may be a trigger for you.

TRAVEL
Traveling to other cities / states to visit with family and friends is common around the holidays, but it can lead to increase in migraines. Holiday travel can disrupt our eating and sleeping habits, and raise our stress-levels.

Tips: The holiday season comes with short tempers / fuses and long lines. Keep in mind that everything will take more time during the holiday season, so pace yourself. If you find yourself traveling during the holidays:
Car travel - stay hydrated, keep your regular sleep and eating schedules, take frequent rest stops to get out and stretch.
Air travel - stay hydrated, keep your regular sleep and eating schedules, and take your headache medicine as a preventive (if air travel is a problem for your migraines).

WEATHER
Changes in weather can also trigger some people's migraines - possible weather change triggers include: changes in temperature, changes in barometric pressure, storm systems, humidity.

Tips: Sometimes, by knowing when there are weather changes coming, you can take your abortive medication and prevent the migraine altogether. Also, by getting or keeping other triggers under control (such as sleep, food, etc...), the weather changes may impact your migraine levels less.

THE PERFECT STORM
The holidays tend to be a perfect storm of triggers: food, sleep, stress, environment, travel, weather, and so on. Even though migraine triggers aren't the same for everyone, the holiday season tends to bring on a multitude of different triggers that can wreak havoc with many Migraineurs.


Tips: Try to control the triggers that you're able to. Determine what's most important for you and your family, and let the other things melt away. Be patient, pace yourself, and go with the flow.

Ultimately, remember that the holidays are not about the parties and the gifts. It's about celebrating the birth of our Lord, with our family and friends. We shouldn't feel guilty, if we can't muster up the energy to meet the expectations we have of the "ideal holiday scene." Living with a chronic illness places limits on what and how much we can do, and we must stop being so hard on ourselves for listening to and taking care of our bodies. Be patient, pace yourself, and go with the flow. 

Insomnia

SLEEP has always been a frustration for me.

Before the accident, I didn't want to sleep because there was so much that I wanted and/or had to do. I didn't want to have to stop being productive to rest.

Then, I was in the car accident. It was difficult to sleep because of being in so much pain. Over the past few years, there have been various side effects from medications that affected my sleep.

So, INSOMNIA has been a struggle for a long time. I've tried sleeping meds - sometimes effective, sometimes not (if they are, they normally wipe my memory... and I wake up about 8-9 hours after I take it and can't get back to sleep).

My doctor started me on Melatonin a month or so ago (I had tried it some before my accident, but it didn't help). Around the same time, I started taking CoQ10 twice a day. I thought that it might be the CoQ10 that was causing me to have trouble sleeping, so I started taking my PM dose a few hours earlier (I also take Lyrica in the PM). But, the trouble sleeping continued. It's been taking me thirty minutes to several hours to get to sleep, and then I wake up after only a few hours have trouble getting back to sleep.

I looked up Melatonin information online, and I found that taking high doses of Melatonin can actually cause sleep disturbance. I've stopped taking it for a week or so, and I've been getting to sleep alright. My doctor wanted to increase my dose, but I haven't tried that yet... not sure I even want to.

Here's hoping for more restful sleep...