"Thanks For Asking"-A Migraine Follow Up
A few months ago I wrote my first migraine story (“Today
will be amazing, unless I get a migraine”), and at that time I’d been migraine
free for 13 days. I went 8 more days without a migraine, and then, BOOM, they
came back with a vengeance. No
rhyme or reason, there never is. I’d like to think it’s the cold weather, or in
Colorado’s case, the ever changing weather, or maybe the dry air that plays
havoc with my sinuses, or changes in barometric pressure (I don’t even really
know what that means), or maybe just the fact that I’ve been sick since
Christmas. Unfortunately, with
migraines, there is no clearcut answer. For as much research that has been
done, and for as smart as those neurologists are, there is still no cure for
migraines, and no solid explanation as to why some people get them and what
causes them. As I wrote in my previous story, I have literally tried
EVERYTHING!! People love to make
suggestions, and I know they are just trying to help, but please, you don’t
need to suggest anything unless you are an actual migraine sufferer and
something has worked for you. Even then, what works for some people doesn’t
always work for others. My lovely aunt suffered from migraine headaches for 40
years (and I never once heard her complain), and finally found relief with
diltiazem, a calcium channel/hypertension medication. My neurologist, logically
thinking this might work for me since genetics were obviously at play, tried
this approach, but it didn’t help, it just made me light headed. We’ve also
been trying Botox injections for awhile, because according to many studies, a
high percentage of sufferers are finding relief with this treatment. So far the only relief I’m getting is a
smooth forehead. I love how he keeps asking me about certain anti-depressants and
anti-seizure medications, not bothering to look at the 80 pages of medical
records I brought in. Hello Mr. Smart Man who went to school for 100 years,
read my records! I’ve tried them all, and they don’t work. Just to appease him,
and because I’m desperate, I finally decided to try something called
Zonisamide, an anti-seizure med I’ve probably already tried (but can’t remember
because there’s been so many), and so far it’s just making me want to sleep all
day (which is bad because the migraines already make me want to sleep my life
away). People love to ask me about my diet, which is ironic, because I am one
of the healthiest eaters I know. These people may think they are trying to
help, but it really just annoys me.
For 7 years I went without coffee, dairy, gluten, and pretty much
anything good. I tried the raw diets and the high alkaline route and even went
vegan for awhile. Basically I drank green tea and ate salad. I lost a lot of
weight, my skin looked great, but I was sick all the time and my migraines just
got worse and worse. IT’S NOT MY DIET BUT THANKS FOR ASKING! Sure, if I eat too much sugar or drink
too much alcohol or indulge in a lot of rich food I will sometimes get a
headache or feel gross, but doesn’t anyone? For the most part, I eat a little
of everything in moderation, that’s what I’ve found works for me. I don’t know
about every migraine sufferer, but for me one of the worst things that goes
along with the headaches is nausea, and it’s the nausea that keeps me from
eating the things I want to eat. People who are on the gluten free bandwagon
don’t understand that for a migraine sufferer, things like toast, cereal,
oatmeal, and chicken noodle soup can be staples. (I’m not allergic to gluten
anyways, thank God). I don’t stay
away from certain foods because I think they are triggers, I stay away from
them because they won’t stay down, if you get my drift. Then there are the people who are anti-pharmaceuticals
(which I understand, nothing wrong with that!), and ask me about all the
natural treatments. Yes, I’ve tried all of those too, thank you very much.
Massage, physical therapy, and chiropractic treatments can all help with
general aches and pains, and sometimes they help me feel better after an
attack, but they don’t prevent my migraines. Acupuncture is relaxing and
therapeutic, but once again, no preventative effects. Homeopathy and craniosacral
therapy have both helped a little with my immune system, but they are incredibly
expensive and did zilch for the migraines. Wow, I’m not giving my fellow migraine sufferers much hope,
am I? I’ll be brutally honest, it sucks.
Every time I try a new treatment or see a new doctor, I have so much
hope, only to be brought down by another attack. The biggest disappointment was my hysterectomy. I underwent
major surgery, which I needed anyways for numerous reasons, but the big hope
was that taking my ovaries out would take away the hormone imbalances- which I
was sure were the main migraine culprits.
Granted, I am still on an estrogen patch, but it’s a very low, steady
dose, and it’s the opinion of most doctors that it’s the ups and downs of the
hormones that cause the migraines. I would appreciate any input from the
community here, maybe I should go without the estrogen completely? That may
bring on it’s own slew of problems…so it’s a hard call to make. Anyways, this follow up story is not
quite as positive as my first story, but that day I was hopeful. Today I am
discouraged. Such is the life of a migraine sufferer. Good days and bad days.
The invisible illness. The
disability others don’t see as a disability. On the outside we look fine. We are not in a wheelchair or
drooling from the mouth, we aren’t missing a limb or hooked up to an oxygen
tank, we aren’t shaking uncontrollably or having seizures. We have days where
we are at parties with our friends and families, or out hiking or bike riding.
We have days where we are having the time of our lives, so how can we possibly
be disabled? The rest of the world doesn’t see the days when we are curled up
in a ball with an ice pack on our head, hot tea by the bed, medicine handy,
phone nearby in case we need to call 911 (which we usually don’t but it feels
like we do), crying because the pain is so bad and it all seems so futile. The
rest of the world doesn’t know that we can’t work full time and can’t pay our
bills and that many of us are on Medicaid and thus don’t have access to the
doctors we need. The rest of the
world doesn’t know that we had dreams and ambitions like everyone else and that
we had to give up on those dreams not because we are lazy and unmotivated but
because we are TIRED AND WE ARE SICK.
My family and my boyfriend and my friends try to understand and try to
be supportive, and I honestly don’t know what I would do without them. Still, I
think that unless you are a true migraine sufferer you can’t really understand
the frustration and the pain, physically and emotionally. My family is so supportive and helpful,
yet I see the disappointment in their eyes or hear it in their voice when I
have to bow out of an event. I
know they would do anything they could to help me, and they have, but the
biggest thing I need is for people to understand that I can’t make commitments.
I just can’t. I have to live my
life day to day, and some days I will be there for the party and some days I
won’t. It’s not a great way to
live, but hey, I’m alive, and on the good days, I love the way I live. Here’s hoping that along with all the
other cures science is researching, a cure for migraines is on the horizon. And
here’s hoping that maybe some of you other migraine sufferers will find comfort
in my story, identify with my journey, and even better, share your tale of
success!
Peace, Love, and Namaste,
Sunnie
Hi Sunnie! Loved reading your story and what lead you to tell it. I do not suffer from migraines, but have friends and relatives who do, so found it valuable and touchingly raw and honest! Are you living in Colorado? Would be fun to connect with you. I'm back in Boulder.
ReplyDeleteHi Bonnie! So good to hear from you and thank you for your positive comments, on both blog posts😊 Yes, I am in Denver. I’ll send you my number in a Facebook message, we should get together! XO
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