September 07, 2013

where to even begin

Recently I've been struggling.  For the last year and a half I've been dealing with debilitating headaches.  Now I've had headaches before.  Take some Tylenol or Advil a few times, make sure I'm drinking plenty of water and be on with my day or night.  An inconvenience, sure, but not stopping me.  After all, I've given birth to three boys,  dealt with broken bones, a few surgeries here and there including a hysterectomy, and I've always bounced back.  But this was different.  It started out with a strange lightheaded dizziness that I thought was maybe due to elevated blood pressure or maybe a low blood sugar.  The first time it was unsettling but I didn't put too much concern to it.  Maybe I was just overly tired, or stressed out, or maybe it was just too much caffeine.  So I filed it away giving myself a mental note to try and go to bed earlier.  A week or so later it happened again.  I stopped and thought about what I had just been doing.  Did I move suddenly or stand up too quickly?  Had I been standing for an extended period of time and locked my knees?  Had I had anything to eat or just caffeine?  I couldn't explain it.  Checked my blood pressure.  It was completely normal.  I was baffled but still not overly concerned.  Once again I filed it away.  Within a few weeks I noticed I had been having a regular headache that just wasn't going away and now the dizziness was more frequent.  I found that my over the counter pain relievers were no longer working.  So I started taking a stronger pain reliever I had from my last bout of kidney stones so I could sleep.  Yet the headache was progressively getting worse and never fully went away.  Same with the dizziness.  I felt like I was one drink away from being completely drunk, yet I hadn't had anything to drink and it was only my head.  Didn't even get to enjoy the comfortable buzz that might accompany the drinking.  Just the dizzy fuzzy head.  I started finding it hard to see when the headache and dizziness ramped up together.  So I finally went to the doctor.  I was worried.  Was I experiencing migraine?  I've never had a migraine before so I didn't know if it was typical.  Maybe I was getting false readings on my blood pressure monitor.  Had I developed Type 2 Diabetes?  I had Gestational Diabetes and could stand to lose about 30 pounds and knew it was a possibility.  Perhaps I was having more menopausal (sorry guys!) symptoms from my hysterectomy.  It was a partial hysterectomy and I still have ovaries but they said it was possible to go through early menopause.  After arriving with a pounding whole head headache and extreme dizziness, I was sent off for blood work.  Off I went and 2 days later I find out my results are right as rain.  Everything is perfect.  Yet I was still having symptoms and even my prescription pain reliever wasn't helping my head.  I wasn't sleeping well, at times waking with a head worse than I started with.  I cut out all my caffeine, as much processed junk as I could, tried to eat as healthy and fresh as possible.  A balance of veggies, fruit, grains, and protein with plenty of water thrown in.  Nothing helped.  I saw the dentist: no cavities, mouth guard adjusted fractionally but TMJ looking good.  Saw the eye doctor: no significant changes in prescription and no signs of on going high blood pressure.  Referral to a neurologist who tracked my brain waves, ran electrical currents to see muscle reaction, ordered MRI, and CT.  Referred to a hearing specialist.  Even took a trip to the ER.  Was having chest and arm pain.  Come to find out it was just heartburn and acid reflux, probably from all the tests and stress of feeling awful.  Every test I took I passed with flying colors.  One doctor told me that out of one hundred percent I passed with one hundred and ten percent.  It's true I hate to fail but really?  Nothing?  So all of my results and I go back to my regular doctor with the diagnosis of probable migraine.  I thought at least it wasn't a major problem with my body somewhere and I know plenty of people who suffer regular migraines and can still continue on every day.  (So suck it up you wuss!)  I was prescribed Imitrex, take one within the first hour of onset and I could take another 2 hours later if needed.  So off I went, prescription in hand and hope in my heart.  I had a diagnosis and something to help.  That Sunday within a few hours of starting my day, my head is slammed with a headache.  No problem, I'll take my new pill and it will be fine.  First pill and plenty of water and I laid down thinking it couldn't hurt.  At the 2 hour mark, after taking the first pill, I felt like I was in my own private hell.  I dragged myself to the kitchen and took the second pill and waited.  My head hurt worse if that's even possible and I started to cry.  I couldn't help it.  I hurt so bad that I felt like I wanted to die.  My poor family had no idea what to do.  I couldn't be comforted.  I just cried and cried and cried.  Monday morning I called the doctor right away and relayed my experience.  I made and appointment and was prescribed a different, stronger pain reliever to try at night as needed and a different migraine pill to try.  Hopefully this one would be better as now I had a constant headache, day and night.  It never went fully away just ramped up and knocked me on my ass.  During the entire testing time of doctor after doctor, test after test, and ever increasing headaches, I had come to eat less and as a result lost 20lbs.  I hurt too much to think let alone eat.  But each day I dragged myself out of bed.  After all I had a family to care for.  Breakfast to monitor, lunches to make, drop off kids to school, work, pick kids up, homework, laundry, dinner, showers, blah, blah, blah.  Normal every day life that I shuffled through in the headache haze hoping that I'd sleep better that night, feel better in the morning.  I couldn't focus, I couldn't think, I was forgetful.  I'd see the doctor and get new blood work to make sure everything was still the same.  He'd stroke test me, check my reflexes, listen to my heart and oxygen flow.   How were the headaches?  The same.  Never better, always there.  Just migraine unfortunately and it's different for everyone.  Yeah, yeah. 

Summer vacation finally hit and we were able to slow down, sleep in, be lazy.  Maybe this is just what I needed.  Maybe I was just stressed out, summer break was the answer I told myself.  But I knew I was kidding myself.  After 7 days of an especially unrelenting headache I went in to the doctor again and was given a shot of Demerol.  It made me nauseous and sleepy yet didn't touch my headache.  Still there the next morning after it all wore off.  I started spending the majority of my day in bed, neglecting my family. "Go play kids, mommys head is hurting again.  Play Legos, build forts, watch TV, play nice, just don't bother me."  Dinner was bowls of cereal and sandwiches over and over.  I washed clothes and dishes only when absolutely necessary.  Grocery shopping was practically non existent, only getting the bare essentials.  Spending quality time became, watch a movie with mom while I close my eyes and will my headache to go away.  I stopped spending time with friends and family.  I didn't want to leave, dreaded it in fact.  I was afraid that as soon as I left the house I'd be slammed with a miserable headache again and ruin everyone's fun.  As soon as my husband came home from work I'd go to bed.  I cried at everything and nothing.  I was sad all the time.  I didn't want to be a part of my family, I was short tempered and unhappy.  I rarely answered my phone and pretended not to see text messages.  I refused invites for BBQ's and get-togethers when invited.  It was unfair to everyone.  I called the doctor again and he referred me to a new neurologist.  With little hope, I made an appointment. 

I go in and tell my story.  He gives me the standard stroke tests, heal to toe walk, check eye movement and reflexes.  He asks me tons of questions and I tell him that in addition to my ever present headache I now have constant tingling and numbing type pain in my left cheek and eye.  He checks my sinuses and ears.  Tells me all about different types of migraines and how they have such a wide range of symptoms that it many times takes a lot of trial and error to find a solution.  We discuss a maintenance medication.  One to take everyday to help prevent the headaches from happening.  Gives me the most recommended medication to start with.  Works on most patients the first time around and keeps debilitating migraines to a minimum.  I was one again hopefully as I walked out. Prescription to start that night.  Took my first pill that night and woke up the next morning still with a headache.  But still, I knew it could take some time to work.  I had to take it one day at a time and see where I was by the end of the week.  By day 2 I was experiencing extreme dizziness once again.  Day 3 I felt like constantly throwing up.  Day 4 I was in bed and hardly remember the few days after that.  By the end of the first full week, I called the neurologist and relayed my week.  Stop taking it, come back in.  I felt defeated and so very sad.  I didn't care anymore about anything.  I was in too much constant pain to feel anything else.  My next appointment I laid it all out.  I was in pain, I was sad, I was miserable.  I didn't like the person I had become and as a result I was no longer a mom, wife, sister, friend, or anything else for that matter.  I was turning into nothingness or at least so it felt.  The neurologist listened patiently and intently.  Did his normal round of tests and asked me a few more questions.  Then he told me about a different type of medication that has had success for multiple types of diagnosis including restless leg and depression as well as for migraine type headaches.  In a lower dose, taken at night to avoid daytime sleepiness, it had the potential to be the answer.  I figured at the very least maybe I'd get a good night's sleep and help my now realized depression.  So fingers crossed I once again went off with tentative hopes of an answer.  Took my first pill that night with a hope and a prayer for relief to be on the horizon. 

It has been almost one month since I took my first pill.  While I do have sleepiness with the pill I find it is at the wrong time of day.  It seems to wire me and has given me a bit of insomnia with a deep sleep in the early morning hours just before I need to wake up.  It makes for a sleepier day and I'm dragging by mid afternoon.  However, I have gotten a bit of my life back.  My headaches have lessened although not completely gone.  I've still had some slam me in the head, knock me off my feet headaches, but it's better.  My mood has improved and I am starting to reconnect with those I've neglected for so long.  I'm trying to be a better mom and make together time more meaningful.  It's not perfect and I'm still learning about migraine everyday.  I read all I can find about it and grill everyone I meet who suffer from migraines to find out how their  symptoms vary, how they deal with it, and what works for them.  Unfortunately I haven't been able to pinpoint my particular triggers if any but still document what's going on nearest the onset of a headache.  It may be a slow process but at least it is progress.  I still find myself in periods of sadness and mood swings.  I still cry easier than ever before but yet there is still hope.  When I go back for my next appointment I have a list of questions for him and plenty to update him with.  Until then I know that I have a strong support system of family and friends always ready with a listening ear, warm arms, and open hearts to hear me rant, cry, pity myself, and curse the world.  My husband and boys love me regardless.  They give me the hugs and squeezes when asked and hold my hand when I need it most.  I am the luckiest girl in the world.

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