Today Will Be Amazing....Unless I Get a Migraine
I am on day 13 without a migraine. I’m afraid to say that out loud because I will probably jinx myself. This is the longest I’ve gone in quite awhile. I usually don’t go more than 2 or 3 days. It’s a little odd, because I haven’t done anything different. No diet or medication changes, and I’ve actually been as stressed as ever. I’ve also been battling some weird cold/flu thing for a few days, which is always a trigger. Maybe, like my neurologist said could happen, I am finally, after almost 20 years, mysteriously and magically growing out of them.
I’ve been hesitant to write about these migraines in my blog (and their
close friends, depression and anxiety) because I am a person who tries very,
very hard to stay positive and focused on my goals. I am also a person who loves to exercise, hike, sing,
socialize and spend time with my family and friends. These are the things I want to write
about in my blog, not sickness and misery. Unfortunately, the last 10 or 15 years
I’ve turned into a person who is often times lazy, unmotivated, and unsociable.
I’ve turned into a person who is afraid to commit to anything, who sometimes stays in bed all day, who is drowning in debt, who can’t hold down a full time
job, and who has all but given up on my dreams. The thing is, it’s not my fault, but I still manage to beat
myself up a hundred times a day.
I got my first migraine back in 1998. I was working at the MGM in Las Vegas, a gorgeous hotel
filled with movie stars and glamour and money and the awful stench of cigarette
smoke. I’d been sick a lot,
struggling with a compromised immune system from said second hand smoke. I figured I was just getting sinus
headaches, and if at some point I could get out of the smoke they would go
away. So for two years I suffered,
popping tylenol sinus capsules every day and powering through the best I
could. I was barely functioning,
calling in sick so much I used up all my sick days and vacation pay, until
finally my Mom sent me to a neurologist.
Sure enough, I was diagnosed with “hormonal migraines” and given a
prescription for Zomig. (One of many “triptans” used to treat migraines-they
are vaso-constrictors, which means they help by narrowing the swelling of blood
vessels). At first it seemed like a miracle. After years of over the counter pills that did nothing but
damage my liver, I finally found some relief. One little tablet under the tongue at onset of pain, and
voila, almost instant relief. For
a few years I did okay, but once I turned 40 those “hormonal” symptoms that
were causing the headaches escalated, and in addition to insomnia and severe
anxiety, the migraines started coming on all the time, out of nowhere. The pills still worked, but I started
getting something called “rebound” headaches. Great. The very medicine I was taking to treat the headache
was causing more headaches. Thanks big pharma. I went from one or two migraines
a month to 12, 14, even 20. Thus
began my journey to find out what was really causing the migraines and how to
prevent them. Fun stuff, like
yearly MRIs to make sure I didn’t have blood clots or tumors, taking horrible
drugs with even more horrible side effects (anti-seizure meds that made my hair
fall out, antidepressants that made me more depressed, hormone treatment
therapy that just made the headaches worse, high blood pressure pills that made
me dizzy, and at one point a very scary dependence on Zanax and Ambien). Tired
of the drugs, I went the natural route and tried all the diet changes: gluten
free, dairy free, sugar and alcohol and coffee and everything good free, raw,
vegan, all to no avail. I went to
physical therapists and chiropractors, tried acupuncture and massages and
cranial sacral therapy, homeopathy, yoga, meditation, essential oils, botox, all
kinds of ridiculously expensive supplements, and finally, as a last desperate
resort, a hysterectomy (which was needed anyways). Nothing worked.
If I had a penny for every doctor visit, every drug, every natural
treatment I tried, I would be a rich girl. Then there were the hospital visits, times I was certain my
brain was going to explode and I would rush to emergency, sometimes be
admitted, only to be given large doses of morphine and an enormous bill. I had a friend ask me one time why I
would go to the hospital for a headache, so let me make this clear: a migraine
is not a run of the mill headache. Sometimes it’s not even a headache. A
migraine can make you think you are having a brain embolism. A migraine is a sharp pain behind the
eye or sometimes an achy feeling in the neck and shoulders, and eventually this
pain escalates to a point where you feel like your head is in a vice grip. The
pain is unreal, unbearable, and along with the pain you may also experience fun
things like nausea, dizziness, fatigue, irritability, aphasia, and crippling
depression. Even after taking a
Zomig or Imitrix or Maxalt or whatever flavor of the month triptan is available, the
pain may subside but the other symptoms don’t. I think the worst part is, I never know when they are going
to strike. I can be having a
perfectly great day and be knocked off my feet. This means I can’t plan or
commit to anything. Me, a girl who
once dreamed of singing for a living, who threw parties every chance I got, who
depends on every dime I earn to pay my bills, who struggles with depression
anyways, who once worked out two hours a day and pursued my goals
relentlessly. That “Me” was
disabled and incapable of doing the things I loved. I know it could be worse- I am not
wheelchair bound, I don’t have cancer, I don’t have MS or ALS or something
terminal, but I am disabled nonetheless. About 5 years ago I actually collected disability income for
awhile, but was unable to get long term benefits so I sucked it up and went
back to work. The thing is, I was
so drugged up half the time I couldn’t focus on anything, and if I got a
migraine, which was almost everyday, I would have to go home. So you can
imagine how that worked out-I couldn’t, and still can’t, work full time. I pretty much gave up on the singing
career, hard to stay in a band when I can’t get out of bed. I stopped committing to social
engagements, and even though I still exercise and hike on my good days, there
are many bad days where I can’t do anything. The hardest thing for me, and everyone around me, is the
depression. I don’t know if it’s caused by the migraines or if it’s just a
demon that’s always been lurking around, but this new adjustment to a life
spent mostly in bed does not help with the happiness factor. There are days when I feel great, maybe
3 or 4 days a week, when I am able to go on an awesome hike or actually commit
to an 8 hour shift at the restaurant, and on these days I will start planning
for the rest of my life. I’m
cured!, (I think to myself), and I start looking for bands to sing with, I
enroll in 20 weeks of yoga, I sign up for some new workshop or class, I start
planning a new career—only to be brought down by a week long migraine. This must be what bi-polar people feel
like. On top of the world and
making life plans one minute, bed ridden and dealing with uncontrollable despair the
next.
I realize this is a pretty bleak blog post, not at all what a fierce
living girl like myself should write, but there is an upside. There always is with me, as I am a “cup
half full” person according to one of my co-workers. The upside is that I make the most of every good minute I
have. On the days I feel well enough, I put all my energy into a tremendous
hike, I pull out my guitar and sing with all my heart (even if it’s just in my
living room with the dog and cat for an audience), I learn a new skill or
refresh an old one (hence the guitar), I spend priceless quality time with my
family and friends, and I give thanks for all the people that love and support
me. I FEEL so much more than I used to, and maybe because I have felt so much pain,
I am also able to feel an abundance of love in my heart. The people that have
stood by me on this unexpected journey are the people I hold near and dear,
especially my friends and my boyfriend and my Mom. A little over two years ago, when Don and I moved back to Colorado,
Mom gave me the t-shirt I’m wearing in the picure: “Today will be
amazing”. A $10 shirt from Kohls
that means more to me than any of my other possessions. I had suffered a breakdown; the
headaches and drugs and stress and no money and anger (WHY DID THIS HAPPEN TO
ME?) had all gotten to me and I had to spend a week in the hospital before our
move back to Colorado. She gave
this shirt to me when I got out of the hospital, and it really did lift my
spirits. We were hoping that in being back home I would have a stress free life
and thus help the migraines. A life where I wouldn’t have to worry about
money for awhile (Thank God for Dad’s finished basement), where I could focus
on getting the medical help I needed (also Thank God for Medicaid), and a life
where I would be surrounded by the support of my loved ones. Still, it wasn’t the life I dreamed
about and I was pretty down when we first moved back. So when Mom gave me this shirt, I got the message. Things may not have worked
out the way I dreamed, and it sucks to be sick and in chronic pain all the
time, but there are still things to be grateful for. I try to find something
positive and amazing in everyday, even on my sick days. It is challenging,
believe me. I fall into “woe is me” moods and imagine what my life would be
like without this illness. Would I
have my dream job? Would I have children? Would I still be in California?
Would I be singing in a Broadway play? But those kinds of questions serve no purpose. Instead, I have to train
myself to say: I am so happy to be home with my family, I am SO happy that I
survived my meltdown in California, I am so happy my boyfriend has stood by me
through all of this, I am so happy I have many good days and good friends, and I am so happy I
have a Mom that loves me enough to be here for me no matter what, and in the
smallest of gifts has changed my whole outlook on life. Today is day 13 migraine free, so Today
is AMAZING!! I'll let you know how tomorrow goes. :)
Peace, Love, and Namaste,
Sunnie
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