connection between migraine and skin temps

This makes sense. I have terrible circulation and my exremities are always made of ice:

The Connection Between Migraines and Skin Temperature

Migraine sufferers have colder noses and hands than people without migraines, possibly due to underlying blood vessel abnormalities, says a study published online in Autonomic Neuroscience. Migraine headaches are considered a risk factor for cardiovascular diseases and stroke, but few studies have examined skin-temperature changes as a marker of vascular health, researchers said.

The study compared skin temperature in the face and hands of 41 Finnish women, 12 with migraines and 29 without headaches. A family history of migraine headaches was reported by 85% of migraine subjects and 31% of controls.

Half of the migraine subjects had headaches only on the right side and five had migraines accompanied by visual disturbances called aura. A digital infrared camera was used to measure skin temperature on the nose, cheeks, forehead, hands and fingertips in migraine subjects during a headache-free period, and in controls. The results were compared.

The average temperature of the nose and hands was about 3.6-degrees Fahrenheit lower in migraine subjects than controls. Of the migraine patients, 58% had skin temperatures below 86 degrees Fahrenheit, which is considered a normal skin temperature, in both the nose and fingers.

By comparison, the nose and finger temperatures were below 86 Fahrenheit in 31% and 40% of controls respectively.

The rest of the article can be read here: http://online.wsj.com/news/articles/SB10001424052702303497804579242423379994080

long time, no post

I haven't updated this blog in a while. I wish I could say it's because I haven't had any migraines but that isn't true. The past few months I've been hit hard with head pain in tandem with my cycle--it starts a few days before my period starts(a few days before that I start feeling very depressed/achy/anxious...it took me a surprisingly long time to connect all of the dots on this one). The migraine will flicker on and off for a week from its start date. Last month and this month were both giant pains in the ass(and head). I end up bedridden with the spins and superstrong nausea, sensitivity to light and smells.

I struggle at times to explain what it feels like to have a hyper-sensitivity to the elements when I have a migraine. It truly does feel like the world is designed to be out to get you. Yesterday I left work early with the migraine rearing its head again, and on the bus a woman sat down next to me who had perfume on that instantly upped my head pain to a 9 or 10. Or even waiting at the bus, when it seems like every other person is a smoker and the wind is blowing it right in my face. Smells of food cooking or exhaust seem to pull the vomit right from my stomach. The world becomes overwhelming. I just want to run and hide.

Today I am feeling more and more like myself. It is ridiculous--the difference in me when in pain vs. when I'm not in pain. Everything is so much more complicated under the influence of pain. I need to wash my hair and clean my apartment AND prepare for two shows this weekend--I'm trying not to overwhelm myself by tackling it all tonight, but I do worry that I may not have another chance(what if the migraine comes back tomorrow night, for example? I hate to think these things, but have to).

My diet: I have strayed from how strict I was in past months in regards to my intake. I still avoid fermented foods and MSG when possible. The soda habit is STILL kicked, which is awesome--I've lost probably 5 to 7 pounds from abstaining from that alone. I've been lapsing on my smoothie game but hope to get back to it asap.

Supplements: Every day I take: Vitamin C, Vitamin D(especially now that it's winter), BComplex, Butterbur, Magnesium/Calcium. I am still a firm believer in this combination cutting down on the frequency and severity of my attacks.

I've had less attacks in the past 6 months, but the attacks are more intense in their own ways. Perhaps because I have less of them? Maybe because they seem to circle around my hormonal monthly rollercoaster? Maybe. It is still the pain I hate most in my life more than anything.

More soon.

a 2 day doozy

I don't really want to write about this, since I'm still recovering and memories are fresh...but if I don't I'm afraid details/feelings/things will be lost to time/that thing my mind does with migraines where it doesn't really want to remember the gorey things. Anyway, here goes.

Saturday I had a late night and Sunday I woke up feeling less than stellar. I had a reading on Sunday at 2:20, figuring it was plenty of recovery time. I hydrated, and then met up with two writer friends at a coffee shop down the street to get my caffeine intake.

I felt fine for about an hour, and then the world started tilting. In the car, I managed to hold off puking until we were on the North Side. I stumbled out of the car in some church parking lot, kneeled down, and puked my guts out. With my sunglasses still on--a detail that is silly but one I will always remember I think. I got back into the car, shaking and wiping my mouth with napkins.

Once we were at the reading I sat on the curb and could only stand it for 20 minutes before I flagged my ride over and asked him to take me home. I stretched across his backseat for the duration and once at my apartment, died. At least that's how it felt/reads back to me in retrospect. I stripped off my clothes, made a bed on the couch, brought the trash can in lined with a new plastic bag, and died.

What that death really meant was: throwing up everything I ingested. Including water and medicine and vitamins. I don't know when I'll be able to forget the awful bitter taste of a vitamin coming back up only partially-digested. I threw up from the couch. In the bathroom. On my knees in the hallway. On my knees in the kitchen, in the dining room. Out of my nose. I threw up while my neighbor's television blared some violent movie. I threw up so hard that I thought I busted something. If the nausea came but didn't fully trigger puking I could just roll my eyes up and apply slight pressure to my temple with fingertips. Them boom--instant vomiting. The migraine switched--the first day(Sunday) it was on the left side of my head. The second day(Monday) it was on my right. For two days I did nothing but hydrate, puke, take melatonin, puke, sleep, puke, and listen to the audio of old Family Ties reruns on my Netflix. I was in pain, plenty of it. The only thing that made me feel better was to bounce or move one leg over and over again.

Dylan brought me soup and crackers in the middle of the day on Monday, which saved my ass. I couldn't stand upright let alone cook anything, and I had already tried to eat/threw up bland ramen noodles earlier. He stayed for a minute, then I was on my own again. Some of the soup stayed down. Some of it came back up. I crawled from living room to bedroom to bathroom trying to get comfortable. I pleaded with my hazy reflection in the toilet. I prayed, which is something I've sincerely done now only 3 times in my life. I prayed. That's how much I hurt. I prayed for the pain to go, or for my life to end. Something, anything, relief of some kind. This attack drove me to a kind of delirium I haven't experienced since going the supplement route. I forgot how ugly they can be, these migraine attacks.

Today it took all my strength to get to work. I made it in by 11am, 3 hours past my start time but at least I made it. It was a miracle to be upright, even though my hands shook so badly on the bus while I drank my vitamin water that I could tell people across from me were staring. I wore my sunglasses until I absolutely had to take them off. I nursed a bowl of chicken noodle soup for 2 hours, and even then only ate half of it. I'm taking it 5 minutes at a time, and with each of those segments I feel stronger and stronger. I can't make a fist, I'm still dizzy and I don't feel so solid on my feet. But at least I'm upright.

The pain was insane. I don't have words, descriptions for it. The squeezing, the blaring, the feeling of being on fire. As many of my previous bad ones, I thought this was the big one. The final something-something to take me out. Yesterday I considered the hospital but fought to stay writhing on that couch instead.

Today I am left with the feeling of a deep deep sadness--the kind that only comes after a bad migraine, the kind that is chemical-fueled and that I can't do much about. I feel completely misunderstood, alone, scared, and very very small. I feel like I'm out of touch with the world...that I went to hell these past few days and I'm not quite completely back yet. Hopefully in another day or two I will return. Til then, I just hold on. 5 minutes here, 5 minutes there. Holding on.

updates

daily intake

This summer has been amazing. Of course I've had a migraine here and there but no super bad ones. I haven't thrown up from a migraine in quite some time--I've been lucky enough to catch them early/knock myself out before the dizziness gets too bad. Do I attribute this to my supplements? Yes I do.

Someone asked me recently if I thought they actually helped, or if it was a placebo effect. I answered them honestly: I don't fucking care. Either way it's working and making my life a helluva lot easier.

Migraines are the worst during my period, as always. It sucks, but whaddayagonnado. I'll take a bad hit once a month vs. a bad hit every week. I get through it.

The latest development is I kicked a lifelong soda habit. Kicked it completely. It wasn't easy. I grew up drinking soda, and up until a few months ago I averaged at least 2 cans of it a day. This is not to say I gave up caffeine--I don't see that happening any time soon(if ever). I replaced with soda with coffee and/or tea. It's been almost two months and I've lost about 5ish pounds by eliminating soda--my soda bloat is a thing of the past.

More soon. This is a bit rushed, but just wanted to update for once and say it's all steady as she goes. I'm in kick ass shape, living my life, and taking the pain as it comes. I feel like a champion, no doubt.

a vent

Oh boy. I'm going to vent here.

This isn't specific to migraines, but to health care in general.

I just got off the phone with UPMC physician services disputing charges on a few bills I received. I see my doctor regularly, every 3 months. The first thing I do when I show up is pay my copay. Every time. Luckily I use my debit card so I have a record of every payment. Yet! Because they charge it as a hospital payment and not as a physician payment, I get charged AGAIN for something I already paid. So. I have to call them and explain it like a 3 year old, even though it's not my responsibility to tell them how to do their job correctly.

And I'm one of the lucky ones because I HAVE insurance. A lot of individuals don't even have the luxury of having to dispute multiple charges for one bill. A lot of individuals can't even get in to see a doctor. It's messy no matter how you slice it.

Having a chronic ailment sucks hard. I couldn't imagine doing it without insurance. Truth: my current job IS my current job because I need the insurance. If I could be insured and wait tables for the rest of my life, I would. I would.

You would think that having to go to the hospital/specialists/doctors many times a year due to a chronic condition would, eventually, become easier. Or that, gosh forbid, a system would be in place to make things a bit more simple for those that need more monitoring than the average bear. But no. It's difficult every time. It's a hassle. Every time.

And, again, I say all of this with the privilege of being insured. I should be thankful to have these sorts of issues and woes, I guess? The system is flawed. Even being insured isn't enough.

Which is why I've veered towards the more natural path when it comes to getting a handle on my chronic pain. Sure, researching is a hassle on its own but it's SO WORTH IT. I've found more relief within the past 6 months than I ever found on any of my previous migraine medications(and I've been on A LOT). When the neurologist wanted to put me on Neurontin, that was my breaking point. The drug is scary to me. Side effects of nerve pain, loss of coordination...it's habit-forming, and I would have to get my blood checked every two weeks. Another pill to swallow every day. Instead of filling the prescription I went home and started reading.

I researched supplement, lifestyle changes, any/all possible triggers. I read a lot about Neurontin and shuddered at the thought. I made a choice, and took a lot of it in my own hands.

I don't understand why health care has to be so damn complicated. But it is. My suggestion: read the fine print. Question things. Don't just do what a doctor tells you to do. Do your own research. Ask questions. Be honest. Be honest with yourself. Consider your options.

This is a disjointed post but dealing with customer service this morning over bills I ALREADY PAID pissed me off a bit. Health care in this country sucks.

1.5 dayer

Sunday I played my soccer game with a migraine that was steady in its growth, until post-game when all hell broke loose upstairs. Driving was a pain in the ass but I made it home in time to truly "die" in the comfort of my own bed with the air conditioning on and the cat by my side. She always knows when I'm sick, it's true. It didn't take me long to get the trash can and throw up. Sleep was crazy. Lots of dreams and turning. Heavy-cold washrag on my head for the duration, left side of my head(where the pain was) pressed up against a pillow. Pressure feels good, usually. This time it felt good but it also made me extremely nauseous. Plus that thing happens where I lay too long on that side and my left ear starts to hurt.

The pain was there when I woke up for work so I had to call off. I needed the day off for the writing retreat at the end of the month but there was no way I could get to work in that condition. I slept again after half a cookie and a melatonin. I slept until 1-something in the afternoon. This is about when I started to feel better, at least well enough to walk around again. 3 to 4 hours after first waking I was able to make pasta for breakfast/lunch/dinner. I still feel pretty gnarly so I took another melatonin and I'm going to go to bed. I hope will all my might that this is gone tomorrow. I can't miss anymore work.

I didn't have to deal that much with feeling isolated this time--I wouldn't let myself. I worked on turning my mind whenever I thought about being alone through all of it. When I felt sad today(which was often), I just reminded myself that the sadness is fallout from the pain and that it too will pass. That it isn't really that real or justified. I remind myself of reality.

I look around and wish I could clean up the apartment or do some writing but I know recovery is most important right now. I know that these things will get done and it will be okay.

migraine and suicide linked

not surprised at all...

Migraine, Chronic Back Pain Tied to Suicide Risk

from WebMD

By Dennis Thompson

HealthDay Reporter
People who endure chronic migraines or back pain are more likely to attempt suicide, whether or not they also suffer from depression or another psychiatric condition, according to a new study.

"Clinicians who are seeing patients with certain pain conditions should be aware they are at increased risk of suicide," said study co-author Mark Ilgen, of the Veterans Affairs Serious Mental Illness Treatment Resource and Evaluation Center in Ann Arbor, Mich.

"Although undoubtedly psychiatric factors are important, there might be aspects of the pain that in and of themselves increase a person's risk," Ilgen said. "There might be something about someone with significant pain that puts them at increased risk."

The wide-ranging study, published online May 22 in the journal JAMA Psychiatry, involved more than 4.8 million people who received care from the U.S. Veterans Health Administration during fiscal year 2005. Researchers identified those suffering from chronic pain and tracked them for the next three years to see if any died from suicide.

The research team then looked for associations between suicide death -- the 10th most common cause of death in the United States -- and clinical diagnoses of chronic pain conditions, such as arthritis, back pain, migraines, neuropathy, headaches or tension headaches, fibromyalgia and psychogenic pain.

They found that all pain conditions except arthritis and neuropathy were associated with elevated suicide risk. But when they took into account the mental-health problems that chronic pain patients also had, the associations reduced for all but three types of chronic pain: back pain, migraines and psychogenic pain, which stems from psychological factors.

Dr. Elspeth Cameron Ritchie, a retired Army colonel and psychiatrist living in Washington, D.C., said the study clearly reinforces the anecdotal link between pain and suicide.

"It makes sense that pain is a risk factor for suicide," she said. "Often, suicide has several different things going on, but pain can be the straw that breaks the camel's back in terms of a person's decision not to go on."

Therapists performing a suicide-risk evaluation should consider adding a question regarding pain to the standard questions aimed at suicidal thoughts and planning, she said.

"It's not a standard question: 'Are you in pain?'" Ritchie said. "I would ask, 'Are you in pain?,' or 'Is pain an issue for you?'"

Psychogenic pain increased people's risk of suicide the most, followed by migraines and back pain. Psychogenic pain is chronic pain caused or exacerbated by mental or emotional problems, and Ilgen said it is a rare and not well understood condition.

"We think that's not so much about psychogenic pain per se, but the fact that the pain itself is poorly understood and may be poorly managed," Ilgen said. "There's not a clear treatment plan for that type of pain. It's likely that patients with this type of pain may be frustrated with their care and more hopeless and more at risk for suicide."

link to rest of article:

raw

I think that I'm ready to tweak this diet some more. If I can get to a 40-50% raw food diet, that would be ideal. Right now I'm at the beginning of the beginning. Research.

I've been thinking about this for a while, and stumbling across a raw vegan brownie recipe this evening sealed the deal.

Some awesome things:

- zucchini used in place of linguine. Julienne that shit lengthways to make noodles.

- pizza crust out of coconut meat, almond pulp, tomato, garlic, flax seed meal, and basil. Whaaaaaaaat? That sounds incredible.

- there is a recipe for raw vegan lasagna and it sounds delicious and looks kind of crazy.

- my eyebrows raise higher on my head every time I read another raw recipe.

And I'll definitely be documenting it. I can't wait to try kelp noodles. I can't wait to make cinnamon oranges for desert. Man oh man. This is gonna be fun.

snapshot

(a Monday)

At the bus stop shifting my weight from foot to foot, constantly fidgeting, head leaning to the left, trying to read the book in my hands but failing. I am fighting for my composure, praying for my bus to appear. I have a migraine and I want to go home. I made it all day at work and now it's time to truly die.

Or no, maybe not death. More like I am on my way to the gallows, not yet gone. As if I'm leaving to go abroad for months or years and with each hour passing I am saying goodbye quietly to everything I know to be familiar. I am about to spill into the looking glass--this is our moment before the leap.

I look up, panicked. Someone is smoking nearby. The scent takes my head in heavy palms, cracks it in multiple places before shoving it back down on my neck. A smell that goes right to the pain and squeezes it. I try to move without making a scene. The sick part of me wants to confront the smoker but there is no use. They have no way of knowing.

And on the bus. I move seats three times on the bus just to escape triggering smells. Two are perfumes, one is stale cigarette and booze. These smells bring tears to my eyes. Life feels completely unfair. Everything in the world hurts me. I do not understand it. In my growing migraine delirium I start to assume that these people were sent to be my obstacles, life's cruel way of handing me much more than I can hold. When the truth is these are normal scents for the most part, there on a daily basis but never noticed until they become trouble. How snobbish a nose grows from well to sickness.

As the pain grows and throbs and curls and spits on the left side of my head, I try to construct descriptions. What is this pain exactly? I think of Andrew Levy's book, how exact he manages to describe attacks. At least somebody can say it. The pain is...blank space. Wherever the pain is, there's the blank. But the blank, of course, isn't blank. The blank is hot white. It is looking at the sun. It is all I know of storms, crammed into a segment of head. It is everything dark and wrong. It isn't me. It turns me into a shadow of self. The wrong side. Hence looking glass. It feels like madness--drill bits, canker sores, infection, mallets, nail beds, banjo pluck of nerve endings, the removal of balance, speech, movement. The idiot company of nausea, the clinging to things. It takes me away. It brings me back. This happens until I start to wonder which is normal. I don't understand being homesick for both.

white nailed on the wagon

Life's been good. Really good. Spring is here, and that always helps to boost the mood. And a boosted mood means less tension emotionally and physically, which means I can relax more, which means less pain. Which is a very very good thing.

I am still taking my supplements every day. Still reading the label of everything I ingest. This month I fell off track a little bit, in regards to taking care of meals myself. I get busy and/or I get home late and feel too lazy to cook meals ahead of time. This needs to change. The guilt of it is already eating at me. I haven't had a smoothie in a week. But if one falls, then one must simply get back up. So definitely starting the day off with a smoothie tomorrow.

Earlier this week I woke up with a pretty gnarly migraine. I knew I couldn't miss work--I was filling in for the receptionist and I'm out of time off for the month. At first I was really worried about getting to work, and making it through my day AND through my plans in the evening. I decided to give the whole "don't panic" thing a shot and breathed my way through the early a.m. I suited up for the ride and took the bike into work instead of the bus. The fresh air and exercise is often a wonderful help when it comes to my head pain. Blood pumping, lungs filling. It works for me. Before I hopped on the bike I took an Aleve. I drank water throughout the day and avoided all my food triggers. And I couldn't believe it: by 3pm I had shoved the pain completely out of my body.

That simply...never happens to me. If I have it, then I have it. It's hard for me to override the progression once it starts...especially if I find myself waking up with a migraine. But I did it.

I am feeling like a different person these days. I had a bunch of dead hair cut off my head and it feels pretty damn good. I've also been writing a lot these past few months...the truth is, with less migraines each week, I can get more done. It truly feels like I am blessed with extra days. I used to never have a Monday night wtihout some sort of head pain. Now, for the past 2 weeks I've been able to get out and do things on that evening. I find myself with all of this extra time and...opportunity. I can commit to social things, see people I adore, and workout every day like I want to. Less frequent pain means I have more free time, and it also means I am generally happier and less tense. My anxiety is starting to feel much more manageable. I fear these suckers so much...I'm not surprised in my new found level of calm.

My next goal is to find a therapist that I click with. I'm ready to tackle the emotional triggers. I've been in a push-me-pull-me state with it for most of my life...now I feel like I am ready to let all of it go. Getting my hair cut last weekend really triggered something in me in regards to being lighter. That lightness. I deserve it. I want it. I'm ready to fight for it and make it mine.

I have also started to reread A Brain Wider than the Sky, by Andrew Levy. I love ths book so much, more than any other text/literature written about migraines. I am maybe 3 pages in and already I have had tears in my eyes while reading. It feels like a miracle to read about this illness in a language that I can understand and relate to.

Bottom line: I am feeling less and less like an illness and more and more like a person. Someone that can function and can make plans AND take care of myself. So far so great.

update

The new diet is quickly becoming simply "my intake." The newness is fading. It is now a normal morning function--set up the blender, dump in my fruit, juice and flax seeds...fill my pill sorter with my daily intake. Some stats:

Supplements:

2 butterbur/day
2 magnesium/day
2 calcium & vitamin d/day
1 B Complex vitamin

Daily smoothie
blueberries, strawberries, orange-pineapple juice, flax seeds, cherries
(ingredients rotate depending on what I'm in the mood for)

I keep breakfast simple. Smoothie, Special K with Berries, 1 cup. Or an egg beater omelette with salsa on the weekend. I cook a lot more these days. I think it's simply par for the course when you are trying to weed out over processed foods and things like msg, corn syrup. I haven't had chinese take out since this whole thing started...at least 2 months now. I no longer miss it.

Grocery shopping continues to be quite the adventure--I read the labels of everything. No matter how much I might crave/want it, if it has too many ingredients and/or ingredients I can't pronounce, then I put it back. The one thing breaking this rule is caffeine. I vow to one day put down the soda.

I've been sleeping like a champ. If I'm having trouble, I take a melatonin and that does the trick.

I haven't had a bad migraine in about 2 weeks.

Every day I ride at least 10 miles on the bike trainer. Spin class at least once a week. Today I rode into work. As the weather warms up I'm excited for my mileage to increase as well. The hills were very easy today. Felt great.

All this to say I've found some things that work for me in terms of pain management and relief. It is not perfect, and I'm not "cured," by my goodness life has gotten so much better. Easier. I can commit to things and show up as opposed to having to cancel due to pain. I feel great about these changes and this is just the beginning.

zee cutie?

New migraine medication. This one is a battery-powered patch called Zecuity.

How the Patch Works
Named Zecuity, the battery-powered patch is manufactured by the pharmaceutical company NuPathe. About 8 inches long and 4 inches wide, it wraps around the arm or thigh much like an ace bandage. According to Bastings, it uses an electrical current to move the drug through the skin over the course of 4 hours. A small battery and computer chip regulate the charge to make sure the patient gets the right dosage.

The patch provides an alternative to pills, nasal sprays and injections. "Many migraine sufferers experience debilitating pain — sometimes so acute that they can't swallow a pill," says Bastings.

He adds that some people don't like the unpleasant taste the nasal spray can leave behind, and others are uncomfortable with injecting themselves.

That said, the patch does have some drawbacks, notes Bastings. For one thing, it's large enough that it can show when worn under short-sleeved shirts or shorts, and requires some privacy (and at times, the need to undress) to put it on. "For many people, popping a pill is a lot more immediate and simple," Bastings says.

And the patch is not without side effects: about 25 percent of subjects in the clinical study complained of a painful sensation at the patch application site. Others didn't like the reddening that most patients developed after using the patch.

that old mortal feeling

Last night the migraine arrived after much quiet knocking. At least it had the patience to wait until after work and some miles on the bike. I went to bed at 11 feeling awful, and woke up at 3am to puke. I woke up every hour til 8am doing the same thing. Puking my guts out.

I'm about to go to bed and I'm still kinda recovering--I feel a little disoriented, a little stumbly and forgetful. These things pass. Of course the real bit I'm struggling with is how I feel emotionally after being migraine free for 10 days. That is a long period of time for me. I wasn't feeling "cured" but I was feeling alive. Alive. I felt limitless, but not reckless. I can't describe that type of amazing. Obviously I feel the sting after being sick last night.

A pause here to kind of explain my migraine recovery. The first day after a migraine sucks in its own special way. Total newborn status. I'm exhausted, uncomfortable, and more often than not I am still in some pain. Emotions are pressed up to the surface. This specific kind of melancholy while the serotonin fills back up. At the same time it feels like a miracle to sit upright, to walk, to engage in a conversation. That shit feels incredibly surreal after feeling what feels like dying. But then there you are, the other side.

All this to say I'm okay with it. One migraine in ten days? That's huge. It's getting better. I'm staying steady with my diet and exercise. My butterbur arrived in the mail on Saturday so I've added that to the arsenal. Super B, magnesium, butterbur daily.

This migraine wasn't as awful as it could've been(even though throwing up so much always sucks and makes things a bit more difficult...as in ever throw up while your head is being pulled apart?). The thing that helped me the most was staying calm. I hate getting sick but knew it was going to happen. All I could do was make myself as comfortable as possible and go with it. When I couldn't get quite over the edge I would just do a neck roll and for some reason that would trigger the lurch in my stomach perfectly. I'm proud of myself for staying calm. I didn't cry and I didn't feel helpless. Today I recovered by doing what I had to do--forced myself to eat a little something, slept and slept and slept. But I didn't baby myself--as soon as I could, I got moving. The sooner I caught up with my "normalcy" the better I felt emotionally. You get up, you get back in the game. While I've always known it and believed it, that attitude is fairly new to me with this stuff. I feel much more in control since making changes. And last night's pain can't take away those 10 days. Onward.

remember this, self.

Today marks one week with no migraines.

If you were me you would find this slightly amazing.

I'm following my diet, taking my supplements, and reducing my triggers. And filling my life with more things I love and less of what stresses me out. It's a simple formula. And it's working.

I can't even...yeah. I'm happy.

on writing about it.

Going through old journal/writing archives. I found this entry from March, 4 years ago. I definitely still feel this way, though I write about dealing with migraines more often. It's still difficult, but that's alright.

March 31, 2009
So I heard a poem tonight with an all too familiar ring to it. The kind of thing that could have spilled from my own mouth. Not exactly, but pretty damn close. Immediately after the poet read her last piece for the evening, I jumped up and went to her, squishing past the thrones of students to touch her elbow so she would turn to me. I started in right away:

“Hi, I enjoyed your work immensely. Do you suffer from chronic pain?”

She squints at me, because I’m talking fast and direct. “Pardon me?”

“Do you suffer from chronic pain? I thought that one poem…”

A light appears, she nods. “I get migraines, yeah.”

“That’s what I thought. I’ve had chronic migraines for twenty years…”

And I’m kind of gushing at this point, trying to express how much it meant to hear a poem like that. I admit to her how scared I am to write at length about it, even more petrified to share it with others on a microphone. She nods and seems to understand. I say that much to her and then start to pull away, afraid that I approached her with too much. I just couldn’t hold back my feeling of…relief, I guess? To hear someone say it. To be encouraged and inspired by that. Her poem made my eyes well up, because I do not feel that brave yet, or else I am and I just haven’t found the means(or the time, or the space, or something) to tap into it yet.

I have so many feelings about it. It’s all I could think about on the ride home. It was so nice to hear someone else share perspective on the experience. It isn’t something people really talk about because I think sufferers build themselves to protect it, and there is a weird shame/embarrassment involved with being in pain that I can’t even begin to assign words to. Hearing one person’s poem about it on a Tuesday night is not enough, I know that much. I’m glad I could relate, and I’m glad that it moved me and I’m content with my approach to her afterward. But my story and mine, it is still trembling in a weird self-contained casing just under the surface, a raw egg dropped in a pan with the heat still off. Just waiting there slightly shaking. It’s not going to speak itself.

I tried once, at an open mic not too long ago. It was a weird situation. I didn’t feel heard. It’s a two part feeling. One, I do not feel that I expressed it to my full ability. I’m still working on that. Two, I think it wasn’t necessarily an issue of people not listening, but more about me paying more attention to what happened in the air after my sentences. In some way, a way that I cannot explain, I expected the sky to split. I expected the earth to take away my feet. In some tiny weird way, maybe I expected that release to be ultimate.

I have to realize that speaking about it isn’t going to absolve me of the illness. It isn’t going to take it away completely. That isn’t the aim, it isn’t the bulls eye. Speaking out is about awareness, wrapping my own head around it, letting other people in when sometimes I’d rather push them away. These are hard things to admit. When all you want is understanding, why would a person aim to be separate, for distance? It’s all a part of grasping how I feel about it. I seek a personal relief, and it doesn’t have to be(and isn’t going to be) grandiose. Maybe in segments and fractions and glimpses, and I’m okay with that. I’m beyond okay with that.

stupendous

This is the first Monday in many weeks...maybe even months...that I did not leave work with a migraine.

Instead I came home, worked out, made dinner, cleaned a bit, and did some writing.

Honestly, it was like getting time added to my clock. A mighty pleasant surprise. So thankful to spend a Monday evening NOT in pain.

stats

(January 2013)



Among adults of all ages, migraine is one of the top 20 causes of disability expressed as years of healthy life lost to disability (The World Health Report 2001, WHO)

Severe migraine attacks are classified by the World Health Organisation as among the most disabling illnesses, comparable to dementia, quadriplegia and active psychosis (Shapiro & Goadsby, Cephalalgia, September 2007)

Migraine is the least publicly funded of all neurological illnesses relative to its economic impact (Shapiro & Goadsby, Cephalalgia, September 2007)


Depression is three times more common in people with migraine or severe headaches than in healthy individuals (WHO, Factsheet 277, March 2004)

Migraine remains undiagnosed and undertreated in at least 50% of patients, and less than 50% of migraine patients consult a physician (Pavone, Banfi, Vaiani & Panconesi, Cephalalgia, September 2007)

scattered complaining

Another discovery with this new diet of mine:

if you run out of the right stuff to eat, go back to the store and restock.

Simple, right? Not so when you're on a tighter than tight budget. This was my mistake for the past week. Not having the right stuff in my pantry meant cutting corners, which meant eating more of the "not right" stuff. Which, you know, end result: stupid headaches. Migraine, headache. Refrain refrain. Add the cycle of hormones to this and boom: first class in hell.

I have no one to blame but myself for this. I'm kicking myself hard for it, despite my best efforts not to. Tomorrow I go to the grocery store and properly redeem myself.

It's the guilt. The guilt, guilt guilt. Bonecrushing sometimes, the shit we pile on ourselves for not being strict enough, for not being able to follow through, etc etc. The migraines pull all of it to the surface. How can one feel guilty for being sick? It's real easy when you find yourself being sick more often than not.

These are just thoughts. I'm just spilling em.

Other things on my mind:

I'm not a huge fan of public transportation, but I'm glad it's there when I need it. Lately the weather has been too shitty to commute in by bike, so I'm stuck riding the bus to/from work. Little things(but big things to me) drive me bonkers about public transportation--nothing makes me see red faster than a crowded standing room only bus with one or two idiots taking up two seats by placing their belongings in the empty one next to them.

The bus is also a trigger for migraines...more frequently than I care to admit. There are individuals that wear heavy, heavy perfume. People that slather it on as you're sitting next to them. Or someone sits down in front of me that just hotboxed a cigarette at the bus stop. These smells can send me straight to hell if I'm already hurting. What do I do? I change seats. One time the entire bus smelled like exhaust, I had a migraine, and the combination of that drove me off the bus half a mile from my usual stop so I could throw up.

I know what smells trigger my pain--know it as soon as it hits my nostrils. I wrap my scarf around my mouth or I bury my face in my hat. There is nothing you can do about these public triggers--when people get ready in the morning it's not up to them to know if their perfume will make my head hurt. I am well aware of that which isn't in my control. One can never tell what the person next to you or behind you is going through. I know this and yet I cannot express how angry I get when I realize that someone's scent of choice is going to put my head in the toilet. I catch myself getting angry in the moment even though there is nowhere to direct that emotion. It's better to stay calm, keep breathing, and covering the nose.

This particular post has no point really. I've had a migraine hanging around for over 24 hours now and I'm just hoping that it will move on like a storm cloud.

isolation

"Migraine headaches are excruciatingly painful, exhausting, and scary, but almost worse than the head pain and nausea of migraine disorder is the inevitable sense of isolation- the feeling that you are alone, adrift on a raft amidst a sea of tumultuous waves of pain. Social isolation is common in chronic pain illness, but by learning some valuable coping skills, you can beat the odds."

"Sunday night I had an epic crying session. I wanted out of this body, this cage. I was tired of having to fight to do the smallest tasks, like eating or showering. I didn’t want be sick anymore. I howled and shook with frustration and fear for hours."

"People with migraines often feel isolated. The unpredictable attacks can make it difficult to plan or participate in social functions, family events or fulfill work responsibilities. A 2010 study of 246 adults who suffer from persistent migraines found that family members and friends often don’t understand and are sometimes even skeptical of the extreme discomfort sufferers experience. The study found that those with chronic migraines feel stigmatized more than people with other brain disorders. Migraine sufferers feel more rejected, ridiculed and ostracized by the people around them and the condition worsens the more severe the migraines."

These are excerpts plucked from various sources on the internet regarding migraines and feelings of isolation. This is something I struggle with a lot, especially more as an adult. As a teenager they weren't as frequent, and I would fight through them because I had no interest in being confined to a bed when there were things to do and sports to be played and tests to take. Now with their frequency and severity, it's pretty much impossible for me to just ignore it and go about my day.

I have a hard time with this. It ain't pretty. In the depths of a migraine attack I will phone friends just to hear a voice, just to feel connected. It's basically me crying while they stumble through what to say to me. I've perfected my migraine cry. See, crying hard makes the head hurt worse, so now I cry with hardly any tension. No squinting, no sobbing if I can help it. I let the tears just come, I let my face fall to my feet. In those moments you can't NOT cry. But it hurts so you kind of have to event a less painful way to mourn the situation.

It's hard to have people around on a logical level during a migraine attack. There isn't much I can do--can't jump around or talk a lot, can't really provide entertainment aside from continual vomiting and writhing. But I cannot stress how vital human presence is to me in such a vulnerable state. I'm well aware that it probably doesn't make much sense but with pain and need I don't find sense-making to be a top priority. How many friends have come to sit with me or spend the night during these moments? Not many. I can name two. I don't blame them. It isn't fun. Who wants to see someone else in pain? I'll say it again: it ain't pretty. But human presence...at a time when I feel so out of my body and mind, when I feel disconnected to everything but pain...that human presence reminds me that there is gravity, an Earth, a tether. When the pain gets really bad I feel quite desperate, and that desperation scares me so much. This is also why another person's presence is so important to me. Even if they go in the other room while I lay in bed suffering through it that's fine. It is the shared air that calms me. With someone there I will not be driven to harm myself. I don't know how else to say it.

This feeling of isolation swells and shrinks. It is not permanent, but when it comes it feels quite set in stone. When I am not sick, it hovers somewhere just behind me, waiting. Tiny but there. I know people that suffer from chronic pain, but not many--even less will openly talk about it. This leads me to wonder if I should look into starting a support group, or finding one to join. It is hard to have a foot in both words and to straddle it all--a foot in the actual world and a foot in the world of pain. It would be nice to have others to talk about it with.

Isolation sucks. It hurts. At my core, I am not a lonely person. I kind of feel forced to be. It breaks my heart.

migraine pathophysiology

Ah I love brains.

the beginning of the beginning

Change is tough, especially when it comes to breaking habits...especially habits that taste really damn good and aren't that good for you. I'm 31 and still cling to a not-so-secret soda habit. The comfort in it is long gone, and now the act of ingesting it is more reflex than anything. This alone blares big and neon to me, like HEY PAY ATTENTION AND MAKE A CONSCIOUS EFFORT TO BE INVOLVED IN YOUR INTAKE! Which leads me to right now, when I'm trying to be.

A list of migraine triggering foods is long, incomplete and not the same for you as it is for me. Triggers can vary from person to person. However, there are a few hard-hitting triggers such as:

- caffeine
- msg
- red wine (which I haven't had a glass of since I was about 20 years old. I know better)

Caffeine is something I find quite tricky, since it is a main ingredient in some medicines that are used to treat headaches(such as Excedrin Migraine and Cafergot). Personally, I feel like I have an internal dial set to a specific amount of caffeine. Too much too soon and I'm in a world of hurt. Too little too late? Again, I'm in a world of hurt. I am starting to cut back on my caffeine intake. Slowly, ever so slowly. I fear the headaches brought on by caffeine withdrawal(which can last up to 2 weeks).

MSG. I am making a conscious effort to remove this from my diet whenever/wherever possible. Saying this breaks my heart a little bit, because it means no more cheap chinese take out. You must understand that I loooove my chinese food.

the creepy thing about MSG is that it isn't always listed as MSG. It is monosodium glutamate. It may be also called: autolyzed yeaste, sodium/calcium caseinate, glutamic acid, gelatin.

At present there is an FDA requirement to include the protein source when listing hydrolyzed protein products on labels of processed foods. Examples are hydrolyzed soy protein, hydrolyzed wheat protein, hydrolyzed pea protein, hydrolyzed whey protein, hydrolyzed corn protein. If a tomato, for example, were whole, it would be identified as a tomato. Calling an ingredient tomato protein indicates that the tomato has been hydrolyzed, at least in part, and that processed free glutamic acid (MSG) is present.

This is the first and most important step in changing my diet thus far: READ LABELS. Read the label of everything you ingest. If you don't have a label for what you are eating and it's possible, then ask about the ingredients. Right now I'm doing my best to NOT eat foods label-less(this also helps me to abstain from eating out a lot and pushes me to cook mroe at home). I think people, in general, would eat very differently if they had to read the labels/ingredients for everything ingested. Most of it is impossible for the common human to interpret let alone pronounce.

Today I read the ingredients on my baby carrots. It looked like this:

INGREDIENTS: Carrots

There is a lot of information packed onto labels so do yourself a favor and learn how to read them. There are lots of resources on the web to help. Such as this one:


Also, when reading ingredients, pay special attention to the first three or four ingredients listed. Ingredients are listed from most to last. If you see high fructose corn syrup listed second, then yeah. It's got some crap in it. Probably unhealthy.

Again, this is a long process for me. Next week I start replacing one meal a week with a smoothie packed with spinach(magnesium), orange juice(vitamin c), flax seed and other nontrigger fruits.

Here is a list of things that I have cut from my diet so far, as they are potential migraine triggers for me. I will update this list as my diet evolves. Right now, it's quite short:

- avocados (this makes me sad)
- balsamic vinegar
- veggie burgers
- potato chips
- kimchi (sigh. I will miss you so)

More soon because this lady is just getting started. So far it's been rather easy, but I know it's only going to get more challenging. Will I ever give up my comfort in soda? Will I give up my precious french fries? I shudder to think. Buuuuut if it means less migraines then it's worth it.

supplement this

Part of bulking up my anti-migraine arsenal involves supplements--vitamins/minerals I take daily to keep my levels correct. Individuals with migraines are more succeptible to B vitamin deficiencies as well as a magnesium deficiency. I've added both to my daily intake. I invested 99 cents in one of these bad boys:


Nossir, they're not just for grandparents anymore.

However, even with this handy sorter, I can forget to refill each day, so I keep the bottles of vitamins in my bathroom medicine cabinet where I'm bound to run into them while reaching for the toothpaste. The more visual reminders I can have, the better. Instead of filling for the week on Sunday, I usually fill it day by day, first thing in the morning. Don't ask me why. Sometimes I like to take the long way around.

What's in my caddy:

Super B-complex vitamin - vitamin B1, B2, B3, B5, B6, B7, B9, B12. Health benefits are linked to the immune and nervous system, and they also support energy growth in cells. B vitamin supplements definitely give me more energy, and they cut through that daily low headache I tend to get. It also makes your pee super-yellow.

Biotin - though I have stopped taking this since I started the Super B--Biotin is another name for B7, so I'm already getting some of that. Promotes healthy skin, nail and hair growth.

Magnesium - Now, magnesium is the supplement I just started taking, and I'm already finding that I need to tweak how I go about it. Research shows that magnesium levels affect serotonin and NMDA receptors in the brain--both are involved with migraines in some fashion. Here's some numbers:

It is responsible for over 300 essential metabolic reactions in the body. It is required for synthesizing proteins in the mitochondria, the metabolic powerhouses of your cells, and for generating energy in most of the body’s basic cellular reactions. It is necessary for several steps in the synthesis of DNA and RNA. Magnesium is also present in a number of other important enzymes. As important as it is intracellularly, 60% of the body’s magnesium is present in bone, and 27% in muscle. -(migrainesurvival.com)

And I just found out that it's best to take this with calcium, so there's another supplement to add to my trusty caddy. Magnesium is also found in certain foods such as spinach, kiwi, brown rice, raisins, beet greens, tomato paste. Another thing magnesium does? Helps with constipation. In other words, the mag helps ya poop. This is another reason to wean myself off caffeine as well--caffeine decreases the amount of magnesium absorbed in the digestive track. Another fun little fact: if you drink a lot of coffee, you probably have a magnesium deficiency for this very reason. How to fix that? Eat more foods rich in magnesium. This is a part of my diet I am certainly struggling with, as soda and coffee provide me with some warped sense of comfort left over from my younger years. I'm slowly cutting away at my intake--key word being slowly, as I'm quite afraid of caffeine withdrawal headaches(I get enough of them...I really don't need to add another type to the bin).

A few things I am preparing to add to my daily intake:

Butterbur - Butterbur is a herb that, according to some researchers, may cut short the duration and intensity of migraine attacks. Info:

Migraine incidence decrease ranged from 37% - 62% among analysis participants, with approximately no side effects. The only offshoot stated was slight gastrointestinal upset, and that was in a little part of both the herb and placebo groups. - articlesolve.com, "Migraine Busting Butterber"

More thoughts on this after I start taking it.

Feverfew - Feverfew has been used traditionally to treat headaches. It's a member of the sunflower family(this random fact tickled me for some reason). Also:

Another study found that people who took a carbon dioxide extract of feverfew had fewer average number of migraine attacks per month compared to people who took placebo. A 3-month study with 49 people found that a combination of feverfew, magnesium, and vitamin B2 led to a 50% decrease in migraine attacks.

Source: http://www.umm.edu/altmed/articles/feverfew-000243.htm#ixzz2Ku8XXfP9

Up next, more on my diet/food intake. What I'm taking out, what I'm adding, and what(if anything) I've learned so far.

the program

The adventures of a chronic migraine sufferer. On getting sick, getting better, and surviving both.


Today is the day after a migraine. This one was sharp and came on quick. It was on the right side of my head, which was all kinds of disorienting since I am used to them being on the left. Even how I made my bed on the couch had to change. I managed to squeeze out a half-day at work before saying uncle and going home. I was dangerously nauseous on the bus ride home--the only thing that curbed it was balling up my hoodie and pressing it against the right side of my head and breathing as slow as possible.

Currently I'm digging deeper into the 1-2-3 Program book, by David Buchholz. The idea is that one can heal their headaches by things like dietary change instead of quick fixes like medication(over-the-counter or prescribed). I'm all for this perspective. The more I read, the more excited I get. Until...

...until I hit the chapter with suggested dietary restrictions. Oy vey, what is there left to eat?

For example, tyramine is a trigger. What is tyramine? Tyramine is a natural-occurring compound found in many foods that can cause blood vessels to dilate, which can set off nasty head pain in people prone to migraines. This amine is prominent in foods that are processed/aged. The more it is aged, the worse the trigger can be. This covers anything dried, pickled, fermented, salted or smoked.

I'd like to try a low-tyramine diet, for sure. Here are a few things that I will have to say au revoir to:

- sauerkraut
- pickles (NOOOOOO)
- olives
- sourdough bread
- snow peas (NOOOOO)
- lima beans (NOOOOO)
- tofu
- avocado (Sigh. No, please not my avocado)
- eggplant
- beets
- spinach (!?!?)
- fermented or overripe fruit
- nutmeg
- ginseng
...and more that I am now getting too depressed to list here.

MSG is also a trigger. MSG is a form of concentrated salt added to foods to enhance flavor. I think a diet free of MSG would be awesome. To make that happen, here are a few things I will need to avoid:

- soy sauce
- overripe tomatoes
- mushrooms
- any snacks with powdered cheese(Doritos, Cheetos, etc)
- veggie burgers
- sausage
- take-out chinese food
- Progresso and Campbells soups
- marmite
- bacon bits (OH NO)

...Again, the list goes on. The part I find extra-cruel about these triggers is that they may not hit the trip wire immediately. Meaning you may have a food trigger and not get a migraine for up to 72 hours.

According to the 1-2-3 Program, here are a list of other things I will need to avoid:

- caffeine (this is going to be the hardest thing for me to kick. I doubt I will ever completely remove it from my diet, but I would like to knock my intake down a peg or two)

- chocolate
- cheese
- nuts, including peanut butter (I'm not ready to give up my pb yet--it's where I get a lot of my protein anyway)

- citrus fruits and juices, including pineapples, oranges, lemons, lines (I cannot even wrap my head around this one. I love my citrus fruits. I had an orange wtih breakfast this morning--how could I possibly kick those buddies to the curb?)

The program goes on to say that you should follow the diet strictly to get the full results. It's honestly a little too ballbusting for me, so I think I'm going to take some things from the 1-2-3 program and adapt it to my own bastardized version of a migraine diet. For example, I am confident that I can remove MSG from my diet. I can work on removing foods high in Tyramine, but that might take longer. Buchholz recommends following his very strict diet for at least 2 to 3 months before slowly introducing foods to see what triggers one might have. I can't imagine following that sucker for a day let alone months. Oof.

So yeah, food triggers? They are everywhere. And it is a bummer to think about.

My next post will cover more of my current diet plan in detail.