My silent, secret war

My silent, secret war

It’s 3:00 a.m. when I open my eyes. My right eye feels heavy and hot. If I move my head too quickly, burning stabs sear through my temple like lightning bolts. I fumble around in the dark for remedies I had nearly forgotten. I try so hard to not wake my sleeping husband  as I stumble, walk into furniture, and drop precious ice packs and a bag full of medicine as I make my way out of the bedroom, down the hall, and finally drop everything on the sofa. The burning pain in my eye blinds me as acidic tears roll down my cheek. I grab a cold can of grape-flavored energy drink and press it into my eye socket for a moment before opening it.

“Ouch! That’s too cold.” I complain as I press a hot pack to my temple. It only takes moments to realize that heat is not helping either. Pressure feels the best, yet I can’t seem to press hard enough to chase away the fire. I pace about, desperately longing for the sweet relief usually brought on by the strong flow of cold pure oxygen.

“Damn it! Why did I wait so long to ask the doctor for a new supplier? I brought this on myself. I should have known better. I was just asking to get hit hard.”

“STOP IT!” I scold myself in a silent scream.

I take a deep breath and try to wrap the velcro ice pack tighter around my head. I lie back against a throw pillow and take a deep cleansing breath.

“Get up. MOVE.”

I obey the disembodied voice that echoes from deep within the saner recesses of my mind. In the stillness of early morning I am not sane. The searing pain drives me to madness. In my solitary hell I lose all inhibitions. I rock and pace, swinging myself from side to side, cursing at the pain to stop. I almost believe the battle is lost as I stretch my nearly naked body flat on the cold tiles of my kitchen floor. I roll from side to side in an even rhythm, finally crawling to the sliding glass door where I press my face against its cold, flat surface. This momentary relief is broken by the crash of yet another lightning strike within my head. A low gutterral moan escapes from my lips.

If I did not know the truth, I might easily be convinced that all the demons of hell had descended upon me.

“Demons might be easier,” I smirk with a biting sarcasm I have learned to embrace.

I wonder how much longer I can endure. It’s such a strange thought that I chuckle out loud, “Since when has this beast ever given me the option to walk away?”This torment burns like a wildfire for nearly 3 hours, hitting screaching high notes that explode like napalm. With each sour note I suppress the urge to cry out. I pull my hair with equal intensity to counterbalance the raging fire within. The stabs come stronger and faster.

Just when I think the next volley will be the end of me, the fire cools a bit. A sudden chill sweeps over me as my body relaxes from pure exhaustion. Grabbing a blanket, I recline back and begin to breathe again. My right eye and temple feel bruised. The warmth of a heated rice bag feels good on my tender scalp. The fire within is slowly burning itself out.

I drift off in an exhausted sleep just before my family wakes for the day.

Not tired, just getting a migraine.

freeimage-503630-high

“Premonitory symptoms occur hours to a day or two before a migraine attack (with or without aura). They include various combinations of fatigue, difficulty in concentrating, neck stiffness, sensitivity to light or sound, nausea, blurred vision, yawning and pallor.”    International Headache Society

About once a week I will start yawning uncontrollably. It’s not long after when stiff muscles in my back and neck make their appearance.  Within 24 hours, migraine pain will start.  Unfortunately, I can’t yet take my abortive medication. I must wait until the aura begins for it to be effective.

Long ago my family learned to pay attention to this obvious warning sign. We now know that this is the start of a round of “the stupids” when I will have difficulty expressing myself, finishing a thought, or understanding others. It’s also a sign for everyone to turn down the volume on the TV, radio, and even their own voices. All the lights get turned off, too.

I am so thank...yawn…ful for this early warning sign. It allows me time to mentally shift gears in preparation for a migraine. I slow down and release my expectations. By discovering this warning signal, I am much better prepared to take immediate action to eliminate the suffering that comes from being caught unaware.

What about you? What early warning signs do you get that help you prepare for an attack? Take a look at the resources listed below for ideas then comment below to share your insights.

Other Migraine Aura Symptoms
19 Less Often Discussed Migraine Aura Symptoms
14 Migraine Prodrome Symptoms
Compulsive yawning as migraine premonitory symptom
7 Signs You’re Having a Migraine
The Many Symptoms of Migraine

Making do

E tankIt’s been a long time since I have experienced cluster headache symptoms without having oxygen available to me. You see, I haven’t needed to use oxygen for 14 weeks. Amazing, huh? Knowing it’s been that long brings a smile to my face and eases the pain in my eye just for a moment.

It doesn’t erase the reality that I am about to enter a cluster cycle and don’t yet have oxygen tanks. We moved and my former oxygen provider does not service my new city. At my neuro checkup I asked about a provider. The doctor asked his staff to find a provider and contact me. Three weeks later I still hadn’t heard from them so I called yesterday and then followed up today. Finally I get a provider name and contact them. Now it’s just a waiting game while the neuro’s office sends the right information to get my tanks delivered.

In the meantime, I am trying to creatively manage the eyeball stabs with Tiger Balm, Migrastick, energy drinks, and ice packs. My dear husband even let me shove my eye socket into his fist for a few minutes before dinner tonight. Hopefully I can hold off a full-blown attack until the tanks arrive.

All I want for Christmas is a full E tank…

Yet another comorbid diagnosis

When I started on this journey 2 years ago, all I wanted was relief from what felt like near-daily migraine pain. I have learned much about headache medicine and about my own body. In the process, I have received a few new diagnoses. I also learned that the cluster headaches I thought were in remission were actually happening several times each week. I had mistaken the attacks for migraines and was treating them inappropriately.

So I went from “Chronic Migraine” in 2010 to all of this today…

Migraine with Aura
Episodic Cluster Headache
Obstructive Sleep Apnea
Dysthymia
Restless Leg Syndrome

…and the newest member of the family…Fibromyalgia

I’m now officially off the “chronic” list for both Migraine and Cluster Headaches…for now. Hopefully with good treatment and self-care I can stay that way for a long time. Now I can concentrate on improving some of these other issues that have been revealed in the process.

The reality is that none of these conditions exist in a vacuum. All the good information I have learned about trigger avoidance, comfort measures, pain management without drugs, stress management, and lifestyle change still apply. What has been good for Migraine is also good for all this other stuff. In fact, they are all intertwined and must be approached as a whole. I am not a list of diagnoses that can be checked off and treated individually. I am a whole person with a unique set of challenges, just like everyone else in the world.

The impossible has happened

The impossible has happened

September 3, 2013 was the day I last used Oxygen to abort a cluster headache.

Since that day I have experienced 9 “shadows” — a migraine-level pain, warmth, tearing, and eye drooping in the eye that normally experiences attacks. These “shadows” have been eliminated using a combination of energy drinks and Tiger Balm.

And now, after 14 days of nothing, my neurologist changes my diagnosis to Episodic Cluster Headache.

U-N-B-E-L-I-E-V-A-B-L-E

Who would have thought this would actually happen to me?

Well it did, and it can happen to you, too.

It probably won’t happen to you exactly like it worked for me. Each of us have our own path. We take our own journey. I can say that the first step toward relief started with an accurate diagnosis and treatment by a qualified headache specialist. Without that, I’d still be stumbling around in the dark, waking my family as I bang into my oxygen tank.

I’m no fool. I know the Beast will probably visit again. So I’m prepared. I still have plenty of energy drinks, Tiger Balm, Cayenne spray, Oxygen, and Toradol injections. I won’t stop taking the Verapamil every day as prescribed. And I certainly won’t push it by drinking alcohol, although on stressful days I do occasionally miss my Sour Apple Smirnoff.

Still, I don’t miss those 3:00 a.m. wake-up calls.

Rating migraine disability differently

Inspired by a post from Kerrie Smyres on Migraine.com, I began rating migraines differently, using a “red/yellow/green light” system to track the quality of my life each day. After about a week, I noticed something interesting. I don’t have “green light” days very often. “Red light” days are pretty rare, too. Most days are “yellow”. But even then, there is a wide variation in my functioning. I need a better system.

Here are 2 examples of “yellow light” days.

Example #1 -This is a “no migraine or cluster headache” day. I’m not having attacks, but I am still severely limited.

I wake up around 10:00 a.m. feeling stiff and sore. It’s hard to get moving. Slowly I manage to prepare a simple breakfast, take my meds, and try to relax with a heating pad on my back while I watch some TV for an hour or so. I get a “good morning” text from my husband and a gentle reminder to make a few important phone calls. My head seems to be cooperating at the moment so I make the calls and try to relax. By noon I am able to move a little better, so I take my breakfast dishes to the sink and slowly load the dishwasher with last night’s dirty dishes. That simple chore sends my back into a burning flame. I grip the rails as I climb the stairs to the office to look for my muscle stim. It takes me awhile to get the pads correctly placed on the right muscle. I turn it on and surf the Internet while I wait for relief. An hour later I can finally move again. I check the time — it’s already past 2:00. Getting down the stairs is a bit easier, so I grab some leftovers for lunch. Before long my son is home from school. We spend some time chatting about his day before his therapist arrives. After an hour of therapy, it’s almost time for my husband to get home. He sends a text letting me know he’s almost home. A feeling of dread comes over me as I realize there is nothing planned for dinner. I know my husband will ask and once again I will have to tell him “no”. Why can’t I get a handle on something as simple as taking out food for a meal? Together we will cobble together something edible and crash. As tired and sore as I am, I cannot fall asleep. I stare at the TV or computer for hours knowing that if I go to bed too soon I will spend the night staring at the ceiling. I wait patiently for those first signs of fatigue. They finally come long after midnight as I slip quietly into bed, trying not to wake my sleeping husband.

Example #2 – This is a “migraine” day. I spend the day coping with prodrome symptoms, trying to carefully accomplish the tasks of the day before the “real thing” finally hits.

I wake at 7:30 and check in with my son before he leaves for school. I eat a decent breakfast, take my meds and load the dishwasher. There is only a faint twinge of pain in my back. Otherwise, my first impression is that this is likely to be a “green light” day. My heart fills with hope as I eagerly anticipate the enjoyment I will get from a productive day. I check email, make a few calls, and touch base with my husband via text. Inspiration strikes and I churn out 3 blog posts in a single morning. Now my adrenaline is pumping with excitement as I prepare to run a few errands. It feels so good to move about unhindered by pain! Just before I walk out the door, I feel that familiar warmth in my eye that usually signals a coming cluster attack. It’s not too serious, so I double check my purse to make sure I’m stocked with meds and comfort measures just in case. I take a moment to fill a water bottle and grab my sunglasses. Still feeling good, I take off. The radio irritates my sensitive nerves, so I turn it off. The sun is bright and my neck is getting stiff. Instead of progressing into a cluster attack, that ache burrows into the left side of my head and begins to throb ever so faintly. I think I can make it through my errands before the worst of it hits, so I carry on. The lights in the store are just a little too harsh so I leave my sunglasses on. Pharmacy, grocery store, back home, take kiddo to work…oops…waited to long. Now the monster is roaring. I pull into the driveway just after my husband gets home from work. He is flustered and needs some help. My head clears just a bit and I’m able to help him find whatever is the lost object of the day. Still, he wants to chat. His voice booms, rattling the foundations of my brain. I stop him and explain the migraine. Disappointed, he quiets down and gives me space to find my meds and an ice pack. The rest of the evening is spent in subdued quiet. Thank God there are still fresh leftovers or we’d all eat PB&J tonight.

It’s strange. I actually got more accomplished on the migraine day than on the back pain day. It seems like every day’s a “yellow light”. I’m always tapping the breaks, checking my mirrors, and preparing for a storm.

Suffering is optional

I’m bound to get some blow-back just from the title of this article. So let’s start by acknowledging the truth. There is a lot of suffering in this world. Horrible, unthinkable things happen every day to people just like you and me.

For the sake of this article, let’s follow that up with a few vocabulary words. Language is meaningless if we don’t understand one another. Sharing the same definition for a word can be the difference between war and peace.

Suffering

Feelings of despair, helplessness, hopelessness, etc. These emotions drag us down and often occur when we perceive that we have been abandoned — either for real or imagined. We want to give up. We look for someone to rescue us.

Coping

A set of behavior and states of mind that focus on preparation for problems and work to discover ways to deal with circumstances beyond one’s control. This is not an emotion, but a mindset. Coping is learning what to expect and how to deal with it.

Suffering = emotions

Coping = thoughts, behaviors

All migraineurs have experienced suffering, but not all experience coping. If you’ve never been given the tools to cope with the uncontrollable, then you will experience suffering. Victims experience suffering. In the middle of an uncontrolled migraine, unable to access effective treatments, and surrounded by people who don’t understand, anyone experiences suffering and feels like a victim. A victim is desperate to be rescue, delivered from her suffering. A victim might say, “You just don’t understand what it’s like. I’m in agony here,” and she would be right.

Now here comes the part where I’m likely to make a few enemies.

Do you realize that being a victim is a choice?

I can hear the protests now…

I can’t find a good doctor.

I don’t have health insurance.

I can’t afford my medication.

Nothing is working.

My doctors gave up on me.

All of that is true. I have made each of those statements many times. The truth of the problem isn’t an excuse to wallow in suffering as a victim. You do have an option. Every circumstance, no matter how terrible, gives us the opportunity to choose. There are countless stories of people who experienced horrible situations and refused to become victims. They took charge of what they could, no matter how dire the circumstances. Will we be victims or will we learn to cope?

Let’s face it. Migraines will happen. We all have a choice, even when the attack is so bad that we can’t lift our head off the pillow. We can choose to suffer or we can choose to cope. It may not change the pain or the duration of an attack, but it will change how we see ourselves.

The next time you have an attack, ask yourself, “What can I do?” Resist the urge to scream, “NOTHING!” and just think. Take a deep breath and think for a moment. Even if all you can do is lay there and breathe, you do have a choice to hold your breath, take deep breaths, hyperventilate, breathe through your nose or through your mouth. Are you understanding this? The way you breath can reduce or worsen your pain. Notice what impact your choices have on your pain. Pay attention to the power you have. There is strength there.

Breathing isn’t your only option. It’s just an example of what you can do when you think you are a helpless victim.

Before you close that window or click the Back button in disgust, thinking I’ve lost my mind, remember this: I’m a migraineur, too. I’ve been broke, uninsured, abandoned by family, friends, and doctors. I know the desperation this disease can cause. I’m not trying to tell you I’ve always been able to resist the urge to choose to be a vicitm. All I’m trying to share is that we all have a choice. We have more power within us than we realize. When we take that small step to refuse to be a victim, we find our power.

Migraineurs are some of the most powerful, resilient people I know. If you haven’t found your power yet, reach out to those who have. Refuse to be a victim. Suffering IS a choice!

Radical Acceptance

I have multiple chronic illnesses. Cures are not expected in my lifetime. I still have hope that my doctors and I can find ways to better manage the symptoms. Nevertheless, we still expect that I will always have to make accommodations to minimize the impact of these diseases on my daily life. Even on a good day when my symptoms are not apparent I make a thousand tiny adjustments to insure that good day continues for one more day. I make choices and do things that healthy people would never consider. My health cannot afford the effects of a carefree life. Spontaneity is a risk I simply cannot take.

I’ve had to make adjustments in my behavior and my expectations. Frankly, I’m still adjusting. My therapist tells me I am grieving and need to allow the process to take its course. If I were the therapist, I’d say the same thing. Thanks to her “homework”, I am finally able to write again. It doesn’t come as naturally as I remember, but maybe I’m just kidding myself. When I think about the past I tend to focus those brief moments in time when I was symptom-free. They seem longer in my memory. The truth is that those were pinnacle moments in a life that was otherwise dominated by pain or attempts to avoid pain.

You see, disability didn’t happen suddenly. It has been a slow, creeping process. I’ve spent most of my life trying to “beat this” in pursuit of a “normal” life. I have scratched, scrambled, and fought my way through life, trying to pretend that pain was not in control. The reality is that pain has been a constant unwelcome guest in my life for 38 years. I don’t think it’s really been a “guest” for decades. Pain is a part of my family. The sooner I accept that and embrace the gifts it brings, the sooner I will feel “whole”. It’s long past time for me to surrender the fight and stop seeing pain as my enemy.

This is no easy process. We are conditioned by society that pain is something we should try to get rid of. Billions in profits are made each year from the sale of pain relievers. Please don’t misunderstand me. Pain is not an enjoyable experience. If I was given the choice to live without pain, I would certainly take up the offer. But I don’t get a choice. In fact, I get an extra helping of the most insidious kind of pain…the kind for which no cause can be found. All the tests and scans show a “perfectly normal” body. No one can point to anything in my body that explains my pain. No medicine will cure it. No surgery will reverse it. It is incurable.

You may think it sounds like I am giving up. That’s not the case at all. Making peace with pain is not the same thing as surrendering to a life of misery. I don’t intend to stop taking medication or cancel my doctor’s appointments. I don’t plan to intentionally expose myself to triggers I know will set off attacks. But when pain comes knocking at my door, I will invite it in and accept its presence as a reality in my life. Marsha Linehan, creator of Dialectical Behavior Therapy calls this Radical Acceptance. It’s the concept that right here, right now, everything is as it should be. Pain is pain — there is no assessment of it’s morality. I do not view it as either good or bad, welcome or unwelcome. It just is what it is.

How can you stand to be online with a migraine?

Many people who deal with frequent migraines post online during the attack. We often receive negative comments from others when we do this. To someone who only gets an occasional migraine or never gets one at all, this behavior must seem counterproductive. Once you understand why we get online, maybe our behavior will make more sense.

We don’t sit at a desk
Most of us use laptops, iPads, or cell phones to post online. The majority consensus was that we could rarely post online if we were forced to sit up at a computer. We are able to use portable devices that allow us to rest in a reclined position or even laying down in bed.

We make accommodations
Many of us have learned to dim the brightness of the screen to accommodate our light sensitivity. Several others wear tinted glasses or sunglasses to reduce our discomfort. A lot of us use this accommodation even when not experiencing a migraine because we’ve discovered that it helps prevent some light-induced migraines.

Not all migraines cause pain
Another theme I discovered is that we all experience varying degrees of pain, from the “silent migraine” with no pain at all, to the excruciating “10” that drives us to seek emergency medical help. A common misconception among non-migraineurs or those with rare episodic migraines is that all migraines are horribly painful and force the person into bed. That is simply not true, especially for people with Chronic Migraine. Migraine attacks actually begin hours before pain starts. Veteran migraineurs with decades of experience have learned to distinguish those early warning signs. Some of us “old-timers” will report a migraine and treat it in the early stages long before we get to the “oh my God, kill me now” stage. That doesn’t mean we never get horrific pain. Certainly we all experience some attacks that put us in bed for days, unable to interact with anyone.

We cope with the pain
For those of us with frequent or daily migraine, there was also a consensus that we’ve learned how to “push through the pain”. What might be a “10” for someone who has never experienced a migraine might be perceived by us as a “6”. Pain perception is very relative. If you’re always in pain, sooner or later you learn how to accomplish a lot of things despite the pain. Posting a comment online becomes “child’s play” compared to working, housework, child care, and the million other things we must do to keep life going.

We get bored
Another theme was boredom. Anyone who has experienced the slow recovery from influenza or a broken bone can relate. There is only so much resting and “taking it easy” a person can do before they get a little stir crazy. Despite the pain, nausea, light and noise sensitivity, after a few days we get bored just like anyone else recovering from a long illness. We are stuck at home, often in bed, isolated from family and friends. We are sick of Sprite and saltine crackers. The internet migraine communities offer us an outlet for this boredom. It is often our only entertainment and social life.

We need support
Speaking of social life, these support communities also offer us something else — validation. Most of us learn quickly that the world really doesn’t want to know every time we get a migraine, especially if we have one most of the time. Healthy people get tired of hearing about our pain, especially when there is nothing they can do to help. But what about our fellow migraineurs? That’s a completely different story. Want to whine about that non-stop migraine triggered by the latest storm front? There are thousands of people online who know exactly how you feel and will support your right to bitch. In fact, you can go ahead and post that ugly selfie of you with an ice pack wrapped around your head. We will tell you that you are a beautiful warrior. Experiencing support and understanding from others helps us not feel so isolated. When we don’t feel alone, we can borrow strength from each other to keep searching for better treatments. It motivates us to find good self-care strategies.

In short, when we post online that we are having a migraine it helps us stick with treatment, take better care of ourselves, experience less pain, and improves our mental health.

 

Suicidal threat – responding on social media

How many of us have said these statements either in our heads or out loud to a trusted loved one? Were we thinking about suicide when we said it? Maybe. Maybe not.

“I can’t take this anymore!”

“I give up!”

“I just want to quit!”

So how can you know? Isn’t it better to “be safe than sorry”?

Many of us remember the day last June when we lost a dear friend to suicide. She did post a statement similar to the ones above just hours before her death. Concerned people jumped on board to encourage her not to give up. In the end, our “help” did not matter. We are still grieving her loss.

I can tell you countless stories of similar posts where quick action stopped a tragedy. I can also tell you that posting encouraging words were not the actions that saved a life. What it took were people who knew how to get the right kind of help to the person in suicidal crisis.

For every genuine cry for help there are dozens of people who use these statements to express their frustration at a health care system that provides meager help for their suffering. Many times these statements are nothing more than the exasperated words of a patient who does not know what to do next — not a suicidal threat.

That doesn’t mean we don’t take these type of posts seriously.

The important thing to remember is to stay calm. If we over-react to every frustrated patient who is sick and tired of stupid doctors then we risk alienating the very people we are trying to help. It is also important to know your own limits. If you are not qualified to assess the severity of an apparent suicidal threat, then don’t even try. That doesn’t mean you can’t help.

Here is what you can do:

Don’t assume that every expression of frustration is a suicidal threat. It is probably still a cry for help, so write back asking for clarification. Find out what it is that has the poster ready to “throw in the towel”. In my experience, I have been “ready to give up” many times, but my expression was no a suicidal threat. My “giving up” usually meant I was tired of doctors not helping me and I wanted to fire them but I didn’t have any other alternatives. Validate their frustration by acknowledging their right to be pissed off. Sometimes we all go on “we hate doctors” rants. The point is to have a conversation with the poster rather than flame them with “don’t give up” replies. Frankly, when I have been at this point, what I needed was understanding and validation, not to be surrounded by people who were unnecessarily panicked on my behalf. It is certainly okay to ask the person what it means to “give up” or directly ask if they intended the make a suicidal threat. This will not make them more likely to complete suicide!

Suicide Prevention LifelineSo what if someone posts and actual suicidal threat, using more specific statements, like “Goodbye world, I’m moving on.” or worse yet, “I’m going to kill myself”? That’s reason for concern and there are steps you can take. Someone who is expressing suicidal threat needs the support of trained mental health professionals. In a crisis, the best way to get this help is through emergency services. It can be a daunting challenge to figure out how to get this help when you might not even know the person’s real name. When all you have is a user ID and an avatar how in the world will you get paramedics to the person in time?

If I know the person outside of social networks (i.e. He or she is a real live friend) then I will try to reach them directly. If I can’t then I will call emergency services in their hometown and request a “welfare check” to make sure my friend is okay. If I don’t have a relationship with the poster, I will still reply to the post with something like this:

I’m so sorry you are feeling this way and care about your safety. Please know that there is help available. Take a minute to visit http://www.suicidepreventionlifeline.org or call 1-800-273-8255 and talk to someone then post back and let me know how you are doing.

Then I will follow the reporting procedures for that particular social networking site. Each one has a policy for reporting, so it’s important to have those links available in case of such an emergency. I have listed as many as I can find below for handy reference. Take some time to visit each one and bookmark the link so you are prepared if anything happens in the future.

Not all sites have specific reporting procedures for a suicidal threat. Facebook and Twitter do. The rest have generic reporting forms you can use. Even if you don’t know the person’s real name or where they live, by reporting what you do know, then the company who sponsors the site can locate the user and report the threat to local emergency services.

Reporting suicidal content on Twitter
Reporting suicidal content on Facebook
Facebook Reporting Form
Instagram reporting
Flickr reporting
Pinterest reporting
YouTube reporting

Knowledge is power, ladies and gentlemen. Knowing what to do in an emergency is half the battle.

More resources:
National Suicide Prevention Hotline
Suicide Prevention Resource Center – Guide to suicide threats on social networking sites
Letting Go – Nice blog with good resources
Another psychologist’s point of view

A beautiful description of this issue from an amazing friend, Alejandra Cavanillas.

This post is dedicated to the thousands of migraineurs who care enough to respond when one of our own is at the end of his or her rope.

Disclaimer: A suicidal threat is a medical emergency that should be addressed by trained health care professionals. Please do not try to “talk someone down” from such a threat without the proper training or in an inappropriate location (i.e. online). Simply refer them to the appropriate help listed above or call 911.