PFO Closure

Ladies and Gentlemen -

I am hear to report that I no longer have daily migraines.

On December 1, 2008, I had cardiac surgery to repair a Patent Foramen Ovale (PFO) in my heart. It was a long shot, but my cardiac surgeon and several neurologists agreed that it was the best course of treatment as I had exhausted all other preventative and abortive treatments.

Questions...please let me know! I would love to share more about my experience or point you to some great resources to learn more about PFO's, the potential link to headaches and my symptoms that are now in remission.

This is an experimental treatment for migraines that has received much press over the last few years. While there have been several trials to try to prove the association between the PFO and migraines, none have yet been successful. Why you ask? Well my doctors tell me for two reasons: 1) These trials are VERY expensive and they are tough to see through with enough funding and 2) the trials previously conducted measured success based on complete remission of all headache symptoms when a patients PFO is closed - not just a reduction or "almost" remission. What that means is if in a year after the closure, if a patient had even one migraine - it was considered a failure for that patient.

As a sufferer of chronic daily migraines, having only one migraine a year would be a complete success for me. Shoot - getting one migraine a month would be fine with me!

SO...what now? I get the opportunity to help educate others in the healthcare sector and anyone who reads this and wants to know more about my case. Hopefully we can inspire additional studies and research into this potentially compelling migraine cure.

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.