Triggers

I thought I would document my migraine triggers because I've never put them in one place before. If for no other reason, I write this so I can print up this list so I have it for my reference. I know there are more out there, but this is what I can remember/come up with this morning.

Food/beverage triggers:

- Cheeses (usually soft and stinky cheeses), red meat, nitrates, nitrites, citric acid, Benzoate, refined sugars, aspartame, sucralose, too much caffeine, not enough caffeine, monosodium glutamate, garlic, onions, too much grilled food, alcohol of all sorts (including my favorite...wine), chocolate - especially dark, spicy soup, anything too spicy, too many starchy vegetables in a period of time

Environmental and Visual Triggers:

- Flashing lights of any kind, direct sunlight, computer monitors, fluorescent lighting, driving/motion, talking on the phone, bending over, turning around too fast, bathing in too hot of water, wearing too high of heels, getting too hot or too cold

Smell Triggers:

- Bacon cooking, cat litter, bleach, furniture polish/finish, paint, new carpet, gasoline, car exhaust, garlic, anything being deep fried

Mental/Other Triggers:

- Not enough sleep/too much sleep, thinking/worrying about getting a migraine, all types of drugs (I will blog about this another time because I am extremely sensitive to chemicals and have not done well trying to find preventative and rescue medications - they all being headaches on), clenching my jaw, tension in my neck and back, getting off my eating schedule, working out too much/not working out (again - I think this is another good blog topic...mental note)

Living "Green" Despite Migraines

My husband and I try really hard to be as "green" as we can, reducing our carbon footprint. We purchase "green" power from the electricity and gas companies, we compost all of our food and yard waste, I take the bus or walk whenever I can, we don't purchase things with excess packaging and try to not use things like plastic bags, paper towels, or other "one use" items, we take our own bags to the store...the list goes on and on and we really try to be conscious of small things we can do.

BUT having migraines and living in fear of migraines leads me to make conscious decisions to put me before the planet in many circumstances.

First, I can't stand fluorescent light. So all these energy saving, good for the planet light bulbs are out for me. They are a guaranteed ocular migraine and I usually get the full blown pain and aura as well within a few hours of using fluorescent light. Anywhere I go - grocery store, doctor's office, department stores - anywhere that uses these fluorescent lights, I get symptoms of migraines. It really impacts my quality of life. I live in fear of the fluorescent trend as it limits my ability to function and participate in normal activities.

Second, taking the bus isn't always an option for me. One of my daily aliments is that I am extremely motion sensitive and get motion sick at the drop of the hat. It happens even when I am driving myself and exacerbates my migraine symptoms. When I am experiencing a more severe bout of symptoms, I can't take the bus - I just get too sick. And when I feel like I might be on the cusp of severe symptoms, I don't take the bus because I fear starting a severe attack on the bus without the ability to take care of myself.

Third, showers and baths are both saving graces for me. I find water very soothing and often I take more than one shower or a bath every day as therapy for my headaches. I know this isn't good for the planet and also know that many people in the world don't have drinking water. I still fill a tub with clean water to soak in and I consciously make the decision to care for my headache instead of the planet.

The good news...sometimes my migraines make it easier to "live green." Here are some ways that I accidentally live greener:

• I avoid processed/engineered foods and tend to buy locally sourced perishables. Most non-perishable foods I either buy organic from companies that don't use chemicals and are conscious about their impacts to the environment.
• I avoid meat in general because it tends to be a trigger for me.
• We don't purchase much cleaning products - bleach, backing soda and vinegar do wonders around the house. The fumes from cleaning products trigger headaches for me, but I know both the planet and our family benefit from limiting the exposure to chemicals.
• Because of our increased medical expenses for my migraine care, I buy a lot of things second hand (e.g. clothes, household goods, gardening things, decorating items, etc.) So our financial balancing actually is a greener way to buy - who knew?!
• I don't buy plastic bottled water - I can taste something off about the water when I have a migraine - almost like plastic (go figure, huh?!). My family thinks I am crazy when I do drink bottled water because I always say "Can't you taste that? It tastes like plastic!" So I have reusable water bottles and filtered tap water.

So while I can't always be as green as I want because I choose to take care of my headache instead of the planet - we do the best we can. One last thought - I do fear a day when there are no more regular old light bulbs and the world uses compact fluorescent bulbs. I can't live in that world comfortably.

Floaters in the eye

A little bit before my chronic migraine started in December '07, I started seeing these "floaters" in my eyes. I've had the kind previously in my life where I see something in my visual field and it is a little distracting. It looks like there is dirt or dust in my eye. These days, the amount "visual disturbance" has increased significantly and I think they are more than just floaters.

If I had to describe what I see when I look out into the world, I would say that I definitely have floaters, but I also have what I think is an ocular migraine which complicates that ability to determine what the problem is. I see lights, spots, lines, chasers and have vision loss that comes and goes throughout the day. When I get auras and then migraine pain on to of the ocular symptoms and the floaters - I get motion sick just keeping my eyes open.

There is quite a bit of info out there on the web about floaters and a lot of people that are really impacted by them, but my doctors don't have any helpful information for me. I keep bringing it up (to my detriment - I know) with my primary care doctor because I think it is important. When I have bouts of bad ocular migraines, the pressure in my eyes is so painful. That can't be good for my eyeballs and I worry about the impacts I will have down the road.

I started seeing an optometrist a few months ago and he took some initial readings and measure my visual field, eye pressure, etc. He confirmed I had some vision loss, but couldn't attribute anything to migraines at this time. I will go back in a few more months to measure these things again to determine if there is any additional changes/loss.

I know I am not the only one out there with these problems - here are some links to other sites that talk about the difference of and the links between migraines and visual symptoms:

http://www.mdsupport.org/library/floaters.html
http://my.clevelandclinic.org/disorders/migraine_headache/hic_the_magical_mystery_of_migraines.aspx

Too many people in one place = #$&!

I love being around people. It energizes me to no end. I love people watching, interacting with new people, hanging out with people I love, anything with people.

Having a migraine constantly has changed this love to sometimes be a fear. I hadn't willingly recognized this change in myself until I went last weekend to the Seattle Shakespeare Company's production of A Midsummer Night's Dream at Volunteer Park (wonderful production - highly recommend - even if you have a migraine). We were gathered around the main stage area, out in the sunshine on a beautiful day right before the play started and I had this overwhelming feeling of anxiety. It was really important to me to very instantly know where I could go to get away from the stimulus of all the people, how to get out of the sun, where the car was parked, what the quickest way was to get to the car, etc. All of this anxiousness was centered around my migraine and what I would/could do to take care of myself in case a quick and severe attack hit.

Strange, new feelings. I had them again yesterday when processing through going to the Bite of Seattle this weekend - which is a wonderful event, full of thousands of Pacific Northwesterners, that we love to go to every year.

I wish I could find a recovery med that I could tolerate. If there was a little pill in my purse that I knew would help alleviate my symptoms long enough to get home to where I feel safe - that would help so much. I've heard people blog and talk about how they have a sense of comfort when they have their Maxalt or Immetrix with them. I can totally understand why they say that. It's almost like a "get out of headache free" card in your pocket anytime you need it (maybe not that good, but something like that). Must put this on the list of things to talk to my headache specialist about.

So I guess I need to realize that in living my life, even if it is temporary, I will have to adjust and accommodate this new fear of being away from my home, around groups of people and getting a migraine attack.

Daily Coffee - Friend or Foe?

As I sit here this morning drinking my daily cup of coffee, I thought I would share the mental debate that I am having with myself.

I have about a 12 ounce cup of coffee every morning. It is my start button - I love it, enjoy it, look forward to it and can't think of my morning without the ritual.

I have family/friends/even some medical advice that tells me that I should eliminate all caffeine (and alcohol, artificial sweeteners, soft cheese...everyone knows the list goes on and on) from my diet. Unless I take an Excedrin or splurge on an iced tea or little piece of chocolate, I don't consume any more caffeine than my daily cup of coffee in my diet.

In the mornings, I often wake with a migraine that teeters on going full blown or staying as an annoyance. I feel that coffee helps me with that. It dilates my blood vessels, gets things moving in my system and I often feel my migraine stay as just an annoyance because of my cup of coffee. My mother (bless her heart...) tells me that headaches can be controlled by the power of the mind and if I was a stronger person mentally, I could do that myself (with or without coffee).

I've read through so many blogs, websites, opinions, research...BLAH. I think it is up to the individual. If someone thinks that I have a constant migraine because I have 12 ounces of coffee everyday, that is their opinion. I have mine so I will drink my coffee, I will love it and maybe some other day I will think about replacing it with decaf.

Cloudy Day in Seattle

As the title implies - it is overcast in Seattle and I want to sing. In the summer an overcast day is like Christmas to me! I can be outdoors, stroll through the neighborhood, walk into my open (usually sunny) kitchen and function almost like what I consider a normal person. What a break!

The last thing I blogged about was accommodation in the workplace and I have to tell you that I've had symptoms that I haven't felt for a while. Back when I was working full time in what I consider to be a pretty stressful job/environment, I used to:

1) Have a hard time staying asleep - waking up at 3:00am pretty much every morning no matter what time I went to bed, what I ate/drank, etc. This has happened the last two mornings and the head pain has been pretty bad upon waking. I used to get so anxious about this because I need to get at least 7 hours of sleep to function and the more I was anxious - the less I could get back to sleep. It is a vicious cycle that often ended up in a severe migraine attack and the inability to even get out of bed when the alarm went off at 6:00am.

I've tried melatonin, loved Ambien and Zoloft (but get pretty addicted to them and don't want to use these types of products - I think they also increase the frequency and severity of the really bad migraine days), tried some anti-anxiety meds but didn't tolerate them...right now I am working on just managing fear and stress, but these old habits are creeping up on me and I need to figure something out if I am going to get back to living and working.

2) Get really agitated all the time. Pain, migraines and other symptoms that I can't control as much as I would like lead to fear, doubt and shame. These negative feelings lead me to feel like life is living me and not the other way around and I get so aggravated. I have a wonderful husband and we communicate openly and candidly when I feel this way and it helps, but I know these types of emotions only contribute back to my pain and headaches so I need to find a better way to stop the cycle when it starts before it gets out of control.

So to sum it up - just working through what types of accommodations and limitations I have over the last few days brings up all this history and fear around migraines. I didn't know how deeply rooted some of these feelings were and how much work I have to do within myself to free me from these self-defeating cycles.

Asking for Accomodation

I am on disability leave from my job right now because I have chronic daily migraines. I've been out of work for over 6 months now. I am so bored, but I can't perform my job duties as stated with my employer because of my migraines. SO...I am getting ready to ask for accommodation and/or look for a new job that will have an easier time accommodating my situation.

Through my searches online, I've found some helpful information regarding the American Disabilities Act, but the hardest part is answering the question for myself "What limitations am I experiencing and what accommodations are reasonable/available to mitigate these limitations?"

I've never defined myself as a disabled person with limitations. Even typing that statement is really hard. But I have to get busy living here and need some accommodation in order to do that. Here is my list of things that I feel I need to get back to work in a reasonable timeframe:

1) Reduced glare screen and a flat panel LED monitor.

2) Ability to have natural light and no flourescents.

3) Scent-free or ability to remove myself from a workspace with pungent or strong frangance.

4) Limited noise environment and ability to listen to soothing music (can be with earphones).

5) Ability to leave work or miss work (either using benefit time or unpaid time as needed) when migraine is too severe to function. This will sometimes be for an entire day or possibly more depending on the migraine severity.

6) Ability to telecommute when possible if staying home with migraine.

7) Ergonomic friendly workstation to reduce stress on neck and back including supportive chair, headset, feet support and keyboard/monitor at proper heights for my build.

In return I will provide:

1) Committment to be the most dedicated and loyal employee I can be.

2) Pledge to not abuse my migraine condition for personal gain.

3) Documentation from my health care providers and specialists as needed to support and further define my accomodation requests.

I have an interview with a new company today and look at it as "practice" talking about these things with employers. Talking with my current employer is too intimidating as I fear discrimination coming back from my leave of absence. If this new job works out - great. If not, I will be better prepared the next time and might be ready to broach the subject with my current employer...

Types of Migraines

Personally I get several types of migraines (as well as other types of headaches). I am on a waiting list for a headache specialist here in Seattle and keep track of the types of migraines I get in my daily headache journal. Hopefully this will help identify if there are other primary causes for some of my pain.

TYPES OF MIGRAINES

Complicated Migraine. The aura of migraine typically lasts from 20 minutes to an hour. Some patients have prolonged aura symptoms that can last hours to days. The aura also typically ends before the headache itself begins. When migraine aura symptoms are prolonged or last into or through the headache phase these types of migraine are commonly referred to as complicated migraines. There are several forms of these complicated migraine attacks. There is ophthalmoplegic migraine where patients develop a partial or complete paralysis of the nerves that are needed for eye movement. There is retinal migraine where the patient's visual symptoms occur from the retina itself versus the portion of the brain involved in vision, as is the case for the typical migraine aura. There is hemiplegic migraine, which can be inherited and has been linked to one of several chromosomes. Patients develop stroke-like symptoms with sensory and/or loss of strength of muscles. There is basilar migraine, which used to be called Bickerstaff's syndrome. Here patients start with a typical migraine aura then progress to developing neurological symptoms related to the bases of the brain called the brainstem. Unlike typical migraine attacks where numbness can occur on one side of the body in this form both sides are affected. The headaches in basilar migraine are often at the back of the head and may result in very severe vomiting.

Hemiplegic migraine. Temporary paralysis (hemiplegia) or nerve or sensory changes on one side of the body (such as muscle weakness). The onset of the headache may be associated with temporary numbness, dizziness, or vision changes. These need to be differentiated from a stroke.

Ocular Migraine. Ocular migraine is a term which may have different meanings to different physicians. Many times, migraineurs will have just the visual warning signs or aura of their migraine attack without the headache. This occurs more frequently as one gets older and can be a frightening phenomenon. This is also referred to as acephalgic migraine, or migraine aura without headache. Some physicians refer to ocular migraine as retinal migraine, where there are repeated attacks of one-sided blind spots or blindness lasting less than an hour and associated with a headache. It is important to rule out eye disease or a disorder of the blood vessels leading to the eye as possible causes.

Exertion Migraine. This is normally a short lived migraine brought on by physical exercise (combined with dehydration), exertion through lifting or sometimes it can even be caused by a fit of sneezing or bending over.

Retinal migraine. Temporary, partial or complete loss of vision in one eye, along with a dull ache behind the eye that may spread to the rest of the head.

Basilar artery migraine. Dizziness, confusion or loss of balance can precede the headache. The headache pain may affect the back of the head. These symptoms usually occur suddenly and can be associated with the inability to speak properly, ringing in the ears, and vomiting. This type of migraine is strongly related to hormonal changes and primarily affects young adult women.

Status migrainosus. A rare and severe type of migraine that can last 72-hours or longer. The pain and nausea are so intense that people who have this type of headache often need to be hospitalized. Certain medications, or medication withdrawal, can cause this type migraine syndrome.

Ophthalmoplegic migraine. Pain around the eye, including paralysis in the muscles surrounding the eye. This is an emergency medical condition, as the symptoms can also be caused by pressure on the nerves behind the eye or an aneurysm. Other symptoms of ophthalmoplegic migraines include droopy eyelid, double vision, or other vision changes. Fortunately, this is a rare form of migraine.

Nocturnal Migraine. Many patients who have migraine will experience their attacks during the early morning hours, most commonly around 4:00 A.M. This headache often awakens the patient. Recent evidence suggests that these attacks are related to changes in adrenalin and related substances that occur on a cyclical basis, and which reach their peak release during these hours. Alteration in sleep cycles may also provoke migraine attacks. When sleeping beyond the normal wakeup time, a patient may be awakened by a migraine attack.

Cyclic Migraine Syndrome. Patients with cyclic migraine usually experience ten or more attacks per month. These headaches differ from cluster in that they are long-lasting and do not have associated typical cluster symptoms. Patients do have typical migraine symptoms during these headaches. It has been shown that lithium carbonate is of some help in these cases. Careful monitoring of the level of the medication in the blood and of thyroid functioning is needed with this medication.

Abdominal Migraine. Abdominal migraine is one of the variants of migraine headache. It is also known by other terms including "periodic syndrome". This variant most typically occurs in children. They usually have a family history of migraine and go on to develop typical migraine later in their life. The attacks are characterized by periodic bouts of abdominal pain lasting for about two hours. Along with the abdominal pain they may have other symptoms such as nausea and vomiting, flushing or pallor. Tests fail to reveal a cause for the pain. Occasionally there may be EEG findings suggestive of epilepsy but this is rarely related to seizures. Medications that are useful for treating migraine work to control these attacks in most children.

I also find this website really helpful - talks about the anatomy of migraines. I am stuck in the cycle and use it as a great starting point for recognizing where I am in my migraine cycle.

7/20/08: Found this great site that gives a wonderful breakdown of the different types of migraines : http://www.healthcentral.com/migraine/types-of-headaches.html

Migraine Shame

I think that most people who suffer from chronic migraines have some form of migraine shame. It sneaks up when you tell someone you can't function the way you would like because you have a migraine. It washes over you when you get the skeptical look and half hearted "Okay..." from someone who hasn't ever had a migraine in their life.

Sometimes when my migraine is bad in the morning and I try to suffer through and go one with life, I get asked if I had a wild time the night before. When explaining that I have a headache - I get the blanket advice to not drink so much next time and then my head won't hurt. Even worse - I've been asked if I had a substance problem because of seemingly erratic behavior during my more debilitating migraine pain. Shame.

Back when I was working, there was a day when all the telltale signs that I was about to launch into a doosey of a headache hit and I knew that I had two options - drop everything and get home before I couldn't drive myself anymore or lock myself in a conference room until it was over - who knows how long. I choose to go home, but received feedback a few days later after recovering from a good friend that one of my co-workers made some derogatory comments about me leaving work because of a headache. This person said that must be a woman thing and that is why they didn't like to work with women. Wow. Shame.

Migraine Shame. Hits me sometimes when I least expect it and reminds me how much opportunity there is to educate people about the disabiling effects of migraines on peoples lives.

Sunshine

I used to revel in a nice sunny, warm day - and parts of my soul still do - but bright, piercing light is one thing that frequently makes me want to crawl into a dark closet to combat migraine symptoms.

Light - specifically bright summer sunshine - is a constant trigger for me. I can wake up feeling fairly stable and all it takes is the contrast between my dark bedroom and my bright kitchen to start my auras spinning.

My husband doesn't experience migraines (fortunately) and I've tried to help him understand what I see when I have an aura. Here are two images that I found online that help illustrate what the world looks like when my head starts to plays tricks on me.

These images are from WiseDoctors.com.

Because I am living DESPITE my migraine and not in fear or because of my migraine - I am going to revel and enjoy this fabulous Seattle sunny day in my garden for the part of my soul that needs nourishing.

Welcome to the Blogging World Self

Why am I doing this?

Because I need a vehicle to express my migraine experiences. I know I can't be the only person out there who is suffering from constant migraines.

Why am I seeking an outlet on the Internet to journal and write about my migraine experiences?

Because I figure it's "greener" than writing on paper and easier than going to my local hospital support group for headache sufferers.

What is it that I hope to gain from this?

I hope to find other people who live happy, successful, productive lives to help encourage me to keep hoping and striving.

My Story...

I've had migraines for most of my life that I can recall. I remember as a child having these debilitating headaches on one side of my head and not being able to see "normally." When I hit puberty, a doctor suggested that I probably have what are called "migraine" headaches. Until I was about 19, I didn't seek treatment for my headaches; I just called in sick to work, missed school or tried to just tough it out.

From about the age of 20 until last December, (with the exception of some bad months and recovering from a closed head injury) I had about a migraine a month or so - maybe less sometimes. But starting December 18, 2007, I've had a constant daily migraine of varying intensity. It hasn't stopped. I am stuck in a migraine loop. I can't work the job that I had, I can't live the life that I know. I am disabled at 28, but I am exhausted living this painful existance and am going to do all that I can to get on with my life.

Eventually - I would like to look back on this time in my life and think about what a learning opportunity this all was. I also hope that maybe I can help someone else who is suffering from migraines to know that they aren't alone.

So that is my story.