I’m not a number,I’m a person.
Today I seen the head neurologist at a well known neurologic institute.Ive been going here for 7 years,and am an unresponsive patient when it comes to migraine meds.
I had another head injury in October.I had the flu,fainted and hit my head in two different spots.This is my 4th (diagnosed) concussion.ive had about two dozen in my life.After that last concussion,my eyesight became more blurry,and my migraines changed.Ive always felt a pressure sensation,but it’s gotten much worse.most days I am stuck on the couch because doing anything for too long makes the pressure worse.My doctors checked my eyes and my optic nerves were swollen.that happens when pressure or fluid builds up in the brain and presses on the nerves.
So I had to have a lumbar puncture on the 6th of june, and after that I felt like gold.I told my mom it was the best I ever felt.The doctor who did mine said the pressure was a tad bit high.All of my doctors at the institute said everything looks normal.my eyes look normal,my MRI is normal (but found a mildly flat pituitary gland) and my pressure from the spinal tap was normal.
According to their criteria
So here I am,stumped,because one minute everyone thinks it’s pseudotumor cerebri,i have all the symptoms,and yet,everything “appears” to be normal.
I sat down with this head neurologist today,i told him what’s going on,he went over everything with me when it comes to criteria I have to meet in order to have The pseudotumor cerebri,and percetage of people who have it,percentage of people who incidentally find they have a flat pituitary gland.
But why does this happen?
That question wasn’t answered.But I managed to confuse the doctor.He CREATED the criteria.HE WROTE BOOKS ON THIS SHIT.so because I have so many symptoms,on the spot he decided to prescribe me Diamox and Amytriptaline .he said “if the Diamox helps,then I know what you have”
I have been suffering for a long time.all my life with migraines.but the pressure becomes unbearable,waking me up in my sleep.I feel so close to finding an answer,yet so far away.
Doctors almost act like they can’t have one oddball patient so to speak.everything has to be very textbook.but today he told me he has to think outside the box and if the Diamox helps “I’ll have the weirdest most normal pseudotumor he’s ever seen”
I keep thinking 'okay this is a start' and then getting let down! I really hope this medication helps because nobody understands what chronic pain,or chronic illness is like,unless they have it themselves.
When someone tells you they’re in pain,believe them,don’t judge them.
Just because they look good on the outside,doesn’t mean they aren’t suffering on the inside.
If you miss out on life events or fun,try not to beat yourself up for it.
I know it’s hard,i personally miss out on a lot.I know my limitations.I end up hospitalized a lot.so I KNOW.But try not to be too hard on yourself.you know your triggers better than anyone else.
Speak up to your doctors you aren’t just a number,you’re a person.
You’re a human being,you’re not always going to meet text book criteria,maybe you are sensitive to meds,maybe you appear normal on scans and tests but what you’re feeling is real!
Let them know every detail,every symptom.It makes all the difference if you’re 100% honest.
Don’t be scared of hearing the truth..sometimes your doctors will let you down.
Go for second,third,fourth,etc,opinions if you feel something is wrong and your doctors can’t pinpoint it.
Don’t stop yourself from letting lose a little.You’re stressed out,have some fun!
Dont let the illness get you down all the time,push the envelope a little and do what you’re comfortable with doing,but have fun! Even if it’s just seeing a movie.
Learn how to cope,and hopefully live again.
Work with your doctors to regain a good quality of life,it may take a lot of time ,but you have to have faith!