An Update & More Migrainous Musings

I have been struggling with a rough stretch of status migrainosus. I sometimes get flashes of clarity or expression, when I'm in the midst of deep distress... sometimes I'm able to capture the words, scribbling them down wherever I can. Last year, I shared some Migrainous Musings. I'm here, again, yet there's little comfort in the familiarity of this place. The timelessness and dominance of pain described in Pain has an Element of Blank continues to resonate and ring true to my own experience.

I continue to share, and hope you'll excuse the raw, unedited migrainous musings / ramblings of a brain in pain.

There's an emptiness inside me that knows no bounds.
Sometimes it tries to swallow me up.
Is it the pain? The anxiety? The depression?
Or is this emptiness me?

To know me truly,
See the darkness inside me,
Then don't turn and run.

The darkness surrounds.
Is it here to stay this time?
Please don't consume me.

I do not fear the darkness in others. I generally don't fear it in myself. But, there are times that it becomes overwhelming, and I can't see the light.

I feel like I'm disappearing. Shattering into tiny pieces and blowing away in the wind. Like I'm a fragile shell, being crushed by the weight of darkness. Do I still exist? What is left of me, when the pain overflows?

I'm not ok. I know I've been in this place before, and somehow come out the other side. But, that doesn't compute right now. This feels like my forever. Like I'm trapped.

Update 1 (March 3):

I've spent most of the last week in the hospital getting infusions to try to break this status migraine.

Six days. Three IVs. Loads of meds. My mind and body are still in turmoil, and I don't know how long it'll take to feel like me again. I've been here before. I know that I get out. But, I don't know how. It feels too hard. I feel too weak.

Update 2 (March 4):

Today is filled with more pain than I feel I can bear. I'm not sure how I can survive it. I've treated hard. I'm trying to give myself rest. Nothing feels enough. I know I'll get through it... somehow... because I always do. Every time. Yet, even that gives me no solace in this moment.

Update 3 (March 5):

I woke today feeling more me than I have in a long time. Pain levels are lower. My mind and body are so weary and I can feel the weight of the battles fought. But right now, in this moment, I'm praising God for His provision and the respite.

"At the end of the day, we can endure much more than we think we can." - Frida Kahlo

Checking In

I disappeared for a while, and I apologize. When I wrote Migrainous Musings, I was two weeks into an intense status migraine. Unfortunately, it persisted.

Following an unsuccessful round of corticosteroids, I completed a 3-day course of outpatient infusions. They brought it to a bit more manageable level, but it didn't help as much as they did last summer when I did them.

Photo by Kelly Sikkema on Unsplash

Then, I got sick. Deciphering whether head and face pain is from migraine or sinus pressure / mucus is tricky... much less how to treat it. A couple days in, the coughing started and made my asthma flare. Dealing with common sickness on top of chronic illness is unpleasant.

I've been doing my best to allow my mind and body the time and space to rest and heal, but it's hard.

Fatigue, depression, anxiety, insomnia from meds, boredom / difficulty distracting oneself... all on top of the ongoing pain and other symptoms.

I'm trying to complete what I can, when I can, how I can. Then, do my best to practice grace and compassion with myself.

"Give yourself the same compassion and grace that you give to the people in your life that you love the most." - Jennifer Rothschild

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.

Status Migrainosus

So, I'm getting pretty scared right now. I've been having meltdowns every day lately, due to the intense and never ceasing migraine pain. I can't get rid of this migraine, and it's been a solid week now. My headache specialist is in a different state than me, so communication is over the phone. He put me on a 2-day steroid pill regimen, but I've already completed day 1 with absolutely no relief. If this doesn't help, I might go to the E.R. I don't know if/what they can do to help, but I don't know what else to do. My husband works at nights, which has been when my migraines are normally at their worst. I saw something on someone's blog about 'status migrainousus' (basically, a severe migraine that lasts more than 72 hours with less than 4 hours of relief). I'm going to try to go to sleep... it has been pretty rough, so I'm hoping tonight will be different.