Friday, January 16, 2015

My Migraine Life

    I've had migraines occasionally for years.  They are a genetic disorder and, since they run in my family, it seems I was destined to inherit them.  As last summer was ending, I noticed my migraines were occurring more often until an entire week went by with no relief from the pain.  I was very worried and called both doctors immediately.  My regular MD (Dr. M) got me in right away and wanted to schedule an MRA and an MRI to rule out tumors and aneurysms, meanwhile, he had a daily medication he wanted me to try.  My new doctor (Dr. P) consulted over the phone and agreed that the MRI/MRA route was a good one, but while she was concerned with the constant migraine (by know it was almost two weeks), she thought maybe it was still only caused by life stress/lack of sleep and if maybe I could do some self-care, massage, get Nathan to watch the baby for a night that the pain would stop.
    Fast forward a couple months...  My MRA and MRI results both came back clean.  I didn't have any tumors or aneurysms.  A rational person would take this as good news but, I'd be lying if I didn't admit that I was actually disappointed when I received the news because I just wanted answers as to why I was in constant, throbbing pain.  I'm trying to be optimistic but realistic. The diagnosis isn't great.  At some point, for whatever reason, the occasional migraines I used to get "transformed" into "transformed migraines" or "chronic daily migraines".  They don't respond to traditional migraine treatments, they act like a chronic pain condition, not like regular migraines.  They can also cause permanent brain scarring (doesn't that sound pleasant?).
      They aren't easily treated and a lot of it is trial and error.  Since the first medication did absolutely nothing for me, Dr. M. suggested a new medication.  This one is actually an anti-seizure medication.  I had to work up to the maximum dosage slowly over time to lessen the chance of side effects and then he said it could take 4-6 weeks at the maximum dose to see if it would work. Well, it's been almost a month at the maximum dose and I've seen no improvement in my pain.
      I saw Dr. P last week.  Since she is more of a holistic doctor, she's pretty convinced it's directly connected to my autoimmune disorder.  Her approach is to focus on the autoimmune disorder and the
migraine will fix itself.  She also thinks there could be a third connection with a TMJ issue so that is an avenue she wants me to explore.  She seems very confident and optimistic and, because if this, I definitely want to do as she says. However, I can't afford to get my hopes up.
      Most of the time, my pain is what I call a "background headache".  It's painful enough to notice it's there, but not painful enough to stop me in my tacks.  That pain never goes away, unless I'm asleep.  Other times, I'll get a full-blown, head splitting migraine.  Those of you who have never experienced that pain, I can't describe it to you, just thank God you've never had to endure it.  I also
get sensitivity to light and sound and nausea.  When the pain gets really bad, or it increases too fast for my mind to catch up to it, I'll throw up.
      I've been keeping a migraine journal.  I write down basics of what I did that day, anything new or different, how I feel, and my pain level on a scale of 1-10.  Certain things definitely make the pain worse.  I can't increase my heart rate above a resting rate.  That means no cardio workouts or even simple things like sweeping my floor too fast.  If I do, it instantly makes my migraine worse.  I can't get too hot, so no hot baths or showers.  Obviously bright lights and loud noises are a given, although
that's hard to avoid with small children!
      Lately, I've had 2 full-on migraine attacks a week.  Those days are the worst.  Especially when Nathan is at work, life must go on and I still have to make meals, homeschool my children, soothe a screaming baby, etc. all while in excruciating pain.  It gets me really suicidal...I just want the pain to stop, I don't think very rationally or long term, everything is very "in the moment".  I have tools and rituals, things that help get me through when it's really bad (I'll cover those in another post) but it's very hard. Someday it feels pretty much impossible.  I have days where it's all I can do just to lie in bed and keep breathing.
      It's been very difficult.  Dealing with daily, chronic pain is definitely not something I ever pictured myself dealing with, especially at my age! I feel sorry for my husband, because he's definitely had to pick up the slack.  I am very grateful for him and he has done it all with such grace.  I feel for my children as well.  I wonder how much they notice, how much they pick up on.  I don't want their childhood memories to be filled with their mother being sick all the time and never being able to do anything. That makes me sad...
      I'm not giving up, not yet.  I have a plan with Dr. P and I'm supposed to meet with Dr. M next week and discuss our next step.  I also have an appointment with the TMJ treatment center next week for a consultation.  So, we'll see how it goes.  If anything, this chronic pain has brought out a patient, enduring side of me I never knew I had!

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