In May my world was rocked when my
left temple literally felt like something inside my head exploded while I was
driving. I pulled over of course because that really scared me. This “headache”
was followed by 4 hours of intermittent stabbing pains that left the left side
of my face feeling like I had been hit in the face with a 2x4 with a few nails
in it and parts of my face were numb. It was a really weird headache, different
from the migraines I was used to so I went ahead and drove myself to urgent
care. The Urgent care doc suspected either cluster headache or trigeminal
neuralgia. From there I was scheduled
for a follow-up with my primary care doctor three weeks later and referred out
for a CT scan, MRI, MRA, CBC, Neurology, Cardiology, Allergy, Nutrition, a sleep study, Psychology,
and a few more that I can’t seem to remember right now.
There were also several
tests ordered from each of these appointments and follow-up appointments. From
the MRI we found out that I do have a brain! Exciting news for me because with
the daily headache (brain noise) I was starting to feel like there wasn’t much
left going on up in there. The Neurologist said that there were a few things to
watch from the MRI and that it meant I had to have a repeat scan in 6 months (Dec-Jan).
Because of the findings of the MRI he did a lot of tests to rule out other
things and all of those tests were negative. So now what I do know is that I
have a lesion on the right side of my brain and two growths in the back of my
throat. Now I know why I get nauseated so easily. Until I have the second MRI with the scan of
my neck and have more than 1 lesion I wont have a diagnosis.
The cardiologist said that my heart is completely normal. I am free to stop taking the medicine as soon as the headaches go away. The allergist said that I shouldn't be poked with needles because my skin is so sensitive that I have a positive reaction even to the negative controls so they can't do the skin prick testing on me. The nutritionist was surprised at how well we eat as a family and wanted to know why I was visiting him. The sleep study determined that I wake up from the deepest stages of sleep to wide awake several times a night for no apparent reason and because of that I was sent to see the psychologist. The psychologist determined that I'm not crazy and to keep taking the melatonin that the neurologist prescribed for sleeping.
So where does this leave me? After
what seems like hundreds of doctors appointments later, I still don’t know. I
just have to have faith. The threat
looms over me that some day I may be diagnosed with Multiple Sclerosis. {The
Neurologist seems pretty determined that within the next three years that will
be my diagnosis even without the second set of MRI films.} I am starting to
change the way I take care of myself.
That is a big part of it I think.
We have been pretty healthy eaters for the past 10 years or so. However,
#1 (my oldest daughter) has only grown ¼” in 4 years and that was due to eating
gluten free for 6 months a little over a year ago because I noticed she wasn’t
growing and knew this to be a sign of celiac disease. I took her to the doctor
recently and they said she is allergic to wheat. #3 has eczema, and #4 has asthma, these can also be caused by a gluten intolerance. So for the sake of our health
we are more than like going to be a gluten free household. I am experimenting
with recipes that sound horribly disgusting, but the kids are gobbling them up
and say they are delicious. I made some changes to a pumpkin cranbery muffin recipe and they loved it. I'll share that with you all if anyone is interested.
I am running every day to strengthen my legs; I am doing occasional strength training for the rest of my body. I have noticed that the left side of my body does have occasional weakness, numbness, pins and needles; this is more noticeable on days that I take a nice relaxing bath in the morning instead of at night. I take a handful of pills every night to prevent the bad headaches. But I still have the daily irritating I know you are there headaches. I have only had 3 I think I’m going to die headaches since May and those I believe were Cluster or Trigeminal Neuralgia headaches. So I guess the handful of medicine is doing its job. Tomorrow I have an appointment to get shots in my face and neck. I am nervous about this for obvious reasons a needle to the face… who wants that? I had shots in my back because of unbearable back pain a few years ago and was allergic to it, so now I’m wondering if I’ll be okay with this series of shots. The shots will be administered in a hospital so if I react badly I’ll be in good hands. My goal is to replace the pills with a healthy lifestlye and diet. I know it isn't possible to cure an auto immune disease but it can be put into remission. This daily pain in my body does not define me, it is here for a purpose and until I know what it is I truly pray that I glorify God in all that I do and say.
So really long post, I’m sorry
about that. And if some of this is repeat information also sorry. But I felt
putting it all down in one place in a “this is what I know so far post” would
be a good idea. I don’t know anything J
Helpful isn’t it. Frustrating. So like I said at the beginning of this “novel”
doctors are people too. They do their
best to help us figure out what is ailing us. Sometimes we have to be patient.
Sometimes we have to be content with the information that God has given us. What
He has given us is always sufficient. We kick and scream and rebel because we
want to know why we are struggling. But,
His grace is enough for me.
~ Blessings Brook
