Invisible
Illnesses Part I
Migraines 101
I’ve
been putting off writing this post for a few reasons. One, I feel like talking about health usually
comes off as complaining. Two, I wasn’t
sure how to even get started because symptoms and side effects are intertwined
and complicated. And three, even though I haven’t been feeling well for a while
I know I have it a LOT better than so many other people!
But, I
know that talking about things can help others learn something they may not
have known, realize they may have symptoms that they would have never
discovered, help them find relief they wouldn’t have otherwise found, help a
relative or friend in need, or have a little more awareness than they did
before and have some sympathy to those around them possibly suffering from an
invisible illness!
So, here
I am awkwardly trying to type out what the last year has been like as it has
probably been the hardest for me in terms of health. Again, that was hard to type as I really didn’t
have it that bad. I only missed a few days of work for health
related reasons {while I wanted to miss about 20+ days for it, I managed to only
miss about two}, I zombie my way through the weeks and made it to the
weekends.
I have
had migraines since I was about 11 or 12.
One of my first memories of having a migraine was when I was living in
Massachusetts (although I consider myself to have been born and raised in
California, my family moved to Massachusetts when I was 10 years old until I
was 12 years old). I was in the car
going to or from a play or performance of some kind, or maybe even church, and
sitting in the back seat with my older sister {who is 8 years older than me}. She also had grown up with migraines but it
seemed to have skipped a generation as my parents hardly even get headaches! I just remember my head feeling like it was
being squeezed together. I put my head
down on my sister’s lap and she felt my temple and noticed how much it was
pulsing. Now, I think most of the time
you can feel a slight pulse in your temple but it was pulsing so much you
hardly had to touch it to notice the blood pumping and pounding through my
veins causing the pain. I don’t remember
much else about that experience other than it hurt. I have had a countless number of migraines
since then and have learned to cope, learned their cycle, and better understand
them in general. It is still incredibly
hard to live with migraines; not knowing when one will come next, being anxious
or fearful at work, in social situations, or even if I don’t get enough
sleep!
Before
this past year I had my migraines relatively under control. I would get the occasional migraine anywhere
from 2-5 times a month. I had my rescue
medicine to take that would make me sleepy and I would miraculously wake up
without a migraine and could go about my day.
A few years ago I added a daily migraine medicine as I noticed the 2-5
frequency jump to 5-10 migraines a month.
The daily medication made my migraines almost non-existent. It was amazing! I always had a little fear in the back of my
mind because I could not be pregnant on this medication, but that was {and
still is} a few years in the future!
This
past year though, I decided to go on birth control. While birth control is a wonderful thing for
many people, I’ve recently discovered that most of the research out there
discourages migraineurs from taking birth control. I wish my gynecologist had talked with
me a little more when I expressed concern about my migraines. There is old research that says birth control
helps people who suffer from migraines.
This may be true in some isolated cases where migraines are caused by
hormonal imbalances, however, this is not always the case {even in hormonal migraines}. And, in my case, it really screwed me up! It
didn’t happen all at once, which is why I think I didn’t realize it was such a huge problem until it was so overwhelming to deal with.
The
first thing general practitioners or neurologists will tell you is to track
your migraines on a calendar. I knew I
should do that, and I kept track of them in my head, but I didn’t start writing
them down until about 3-4 months after I thought they were getting bad. At that point, it was too late. Once I realized I needed to do something
about my migraines, I was suffering 5 out of 7 days a week {sometimes more} and
overdosing on my prescription medicine.
Now this isn’t typical that you can overdose because migraine medication
usually comes out in pills of 6, 9, or 12 for an entire month’s supply. My migraines were so under control before
going on birth control that I wasn’t using any.
So, I had medicine stored up. I
went through almost a year’s supply of strong prescription medication for
migraines in only a few months. There is
no doubt in my mind now looking back on the situation that I was overdosing and
going into a withdrawal and rebound migraine cycle that further aggravated my poor reaction to birth control.
I was
also getting by during my days at work by drinking Starbucks or Dr.
Pepper. Whenever I would have caffeine
at lunch, I would take two Advil, daily.
For any migraine experts, I was practically making my own Excedrin
migraine during my lunch break! Again,
this took me months before realizing this.
The Advil with caffeine would work {years ago Excedrin migraine stopped
working for me, it would make me feel sick and didn’t seem to take the migraine
away} to ward off a migraine for a few more hours until I would get home and could
take the stronger medication. At this
point I was also sleep deprived from all of the medication, caffeine, migraine
pain, etc. that I was also taking melatonin.
Now, I’m thinking melatonin is a trigger for me and also contributed to
more rebound migraines.
As you
can see, I was in a bad cycle that seemed impossible to stop! I went off of birth control in August, and
yet the migraines were still getting worse {not even steadying or slowing} by
October. What was I going to do?
I’m not
sure how I made it to December 7th, 2015 but I did. I decided to forever stop drinking
caffeine. My body must be extra sensitive, because I went through
extreme withdrawal symptoms. Shaking,
nervousness, anxiety, migraines, etc.
After that night and the next few days of zero caffeine, I felt a little stronger. Nothing was fixed, but I felt like it was a
step in the right direction. During this
time I went to my general practitioner a few times and for some reason, he said
he was not ready to send me to a neurologist just yet.
I should have pushed harder for this, because honestly that was just cruel
and he was not living up to his “do no harm” code. {This is the same doctor
who refused to retest me for my TSH levels or change my thyroid medicine, but I’ll
save that for a later post.} There
was no reason I shouldn’t have seen a neurologist!
Dropping
caffeine helped, but hardly. I tried to work
out, but I had so little energy that even neighborhood walks {which I love} were exhausting. All of
my energy went to making sure I showed up to work, fed myself, and got enough
sleep. After I “quit” caffeine, I
decided to tackle the rebound issue. I
had discussed this problem with my general practitioner and he said it could be
causing a problem, but maybe not. It
definitely was causing a problem. I was
very dependent on my “rescue” medication for migraines. This medication should be used no more than 6 times a
month or no more than 3 times a week and I was using it 5 or more times a
week. This was less painful than the
caffeine withdrawals because I could switch out medication, but
my anxiety kicked in whenever I felt a migraine coming. Cue my mind racing: “What should I take?”, “How
long will it last?”, “What if it doesn’t go away?” and a million more questions
like it.
Over
time, this dependence became less and less of an issue and now I do not feel
dependent on my rescue medication.
Whenever I do get a migraine, I need to take the medication, however, I
get them far less frequently now {nearly 8 months later from when I went off of birth control} that it is a safe amount for me to take.
Fast
forward a little bit to when I was able to see an actual neurologist {with no
help from a referral, I found her all on my own}. I believe this is the best way to be successful
in your invisible {or visible} illness, getting a doctor that is right for you!
My
neurologist was reassuring and after listening to me for a good 15 minutes,
immediately told me that “first of all, migraines are a neurological
disorder and even if you do everything right, you may still get them”. That, to me, was what I needed to hear. Throughout all of this, my husband, friends,
and family were all supportive but with that support came many suggestions of “have
you tried this?”, “oh, you ate that?”, “what about if you exercised more?” all
making me feel like if I did one more
thing or if I cut out one more
thing from my life, my migraines would be gone forever. Trust me, if it were that simple I would do
it in a heartbeat. If only I had to stay
away from chocolate {a common “trigger”} to never have a migraine again, I would
do it no questions asked!
The
neurologist gave me samples of different rescue medications to try as it seemed
my current one that I’ve used since I was 18 years old wasn’t working as well
as it used to, added a new daily medication to my routine {one that is safe to
be on while pregnant, even though this is still something far off in the
future!}, and gave other treatment options if all of these failed which left me
with a sense of hope.
The right doctors will get you the right blood tests!
And it's always best to relax afterwards with Strawberry Water and Gilmore Girls ;-)
After
leaving this appointment in January, I decided I would track my migraines. I started the new daily medication and only
had one migraine that week. The next
week, I had two. The following week I had
one. This already was a huge
improvement. Going from December with 25
migraines, to January with only 15 made me feel like a new person. From then, it seemed like each month my
migraines would go down by 5 or 6. Now,
I am back to my 5 migraines or so.
My new
goal is to get off one of my daily medications.
Right now, I am on two daily medications, which is not ideal but if that
is what I need to survive, then that’s good for now. A second neurologist {who was subbing in for
my first one} also told me “There is no shame in needing to be dependent on
medication. Much like a diabetic needs
insulin, a migraineur sometimes needs daily preventive medication”. This, too, was incredibly helpful because my
goal is usually to get off of the medication. Of course, getting off of a medication in
order to get pregnant is OKAY, but after that, it is also okay to get back on a
medication.
Now that
I’ve shared my story {and thank you for reading if you still are!}, I wanted to
also share some helpful tips if you or someone you know is going through a
similar situation where, health wise, you just feel stuck and like no one can help.
What to do to get the help you need:
1. Advocate for yourself even if no one else is doing it. I have gone through a few doctors. Nurses have called my symptoms crazy and that they have “never heard of it” {this isn’t necessarily for migraines, it was for my thyroid, but still, it definitely caused a few migraines!
2. Know when to say no. This may be obvious,
but is so incredibly hard for the majority of people! Know when to say no to your friends, no to
your coworkers, no to yourself. Do not
overbook your schedule, overwork yourself with chores, or run yourself ragged
trying to make others happy.
3. Treat yourself to some pamper time. Okay, so maybe a lot of pamper time. I take baths as often as I need to, or extra-long
showers. Showers were sometimes the only
thing that helped my migraines feel better {a shower and then an ice pack
afterwards!}. I frequently get my nails done to help me relax and I even tried
to get a massage at a “Foot spa”. It was
an okay experience but I will stick to hotel spas and professional spas in the
future.
4. It is okay to ask for help. If you need someone to help with making
dinner, ask them! If you need help with
extra chores around the house {I’m thinking roommate or significant other}, ask! If you can’t stay out later because you need
to get sleep, ask your friends to hang out earlier. Especially if you explain what is going on in
a calm, non-defensive way, your friends and family should be willing to help
you out in any way they can. They may
think you’re being dramatic at first, or even if they never come around, there
is always no harm in asking. Even if
they do think you’re crazy, maybe they aren’t meant to be the ones helping you
and then you can see tips #1, 2, and 3.
5. Find a good doctor. I can’t tell you enough how important this
is!! Similar to #1, once you find a good
doctor, you won’t have to be defending yourself or sticking up for yourself every
chance you get. The good doctors will
listen, be understanding, and truly help you find a medication and action plan
that will work for you.
Thank you again for reading my story and I hope these tips are helpful! Come back next week for more “Invisible Illness” signs, symptoms, tricks, & tips!
