Archive for the ‘The Headache’ Category

In 19 weeks, I could gestate half a baby.

In 19 weeks, I could’ve trained and run a marathon.

In 19 weeks, I could’ve done more things than I can even begin to list here.

Because 19 weeks is a really long time.

But, instead, for the last 19 weeks, I have been in pain.

And though I’ve tried to dial back the whining here, the pain and all over horrible way I’ve felt for the past few days has rendered me useless. All I can do is whine.

I have 2 tests tomorrow and then I’m done for the semester. DONE. The end is so literally in sight, but it is covered by this huge ass boulder that is relentless pain.

I’m trying, but I can’t study. I’m not learning anything no matter how many times I flip through my notecards or flip though my study guide. I’m trapped in this bubble of endless pain.

The idea of getting out of my bed, driving to school and taking 2 tests tomorrow literally makes me cry.

Though to be honest, my head hurts so much tonight that the idea of waking up tomorrow at all makes me cry.

On November 27th, 2007, I did what I thought was best for myself. I had a surgery, which for all intents and purposes, was elective.

I chose to have a skilled neurosurgeon remove a piece of my skull, of my first 2 vertebrae, release connective tissue in my brain and put a piece of cow heart lining on my brain’s lining.

I chose that.

And from that surgery, I got 8 months of freedom. I had 8 months of normal life, without pain, 8 months that will stand out as some of the best of my life. In those 8 months I returned to work, school and got married. I was a functioning human.

Last year, when I reflected back on the surgery, I was in the midst of a different (and holy crap so much less severe) long lasting headache. But at that point, I was still sure that I had made the right decision in having this surgery.

But this year, things just aren’t as clear.

There are some things that are markedly better than they were 2 years ago. 2 years ago my balance was awful. I almost fell over at a wedding from standing with my eyes closed. 2 years ago, my eyes would dart from side to side unpredictably, rendering me virtually incapacitated.

But 2 years ago, my left hand didn’t tingle. 2 years ago, my head didn’t hurt with a ferocity that literally brought me to my knees. 2 years ago, I wasn’t sore from lumbar punctures. 2 years ago, I had a diagnosis and a solution.

And I don’t know when the hurting will end. I live with fear and pain that 2 years ago only existed in my nightmares. The nightmares that are now my life.

As time has passed, my body has worked to cover the only real proof I have of what I endured. The scar is now light colored, it is surrounded by hair and if you aren’t looking closely, you might not even see it. But at the same time, my life has worked so hard to remind me of what that scar lies above. Of the pain and fear and unknown. Of the possibilities of more scars and more suffering.

(2 days post-op)

(2 weeks post-op)

(1 year post-op)

(2 years post-op)

Maybe next year the scar and the pain it represents will both be more invisible.

Maybe.

I understand that a lot of you don’t understand why I’m upset. Because for all intents and purposes, this is crazy. I should not be devastated to hear that everything’s normal. I know that.

Except.

Except that everything is so clearly not normal. I have heinous headaches, low pressure in my head, and I have low protein in my CSF. I have done all the research I can, and the only reason for low pressure and protein is a CSF leak. The only reason. I invite you to do your own research, I promise, there’s simply no other cause.

Except.

Except, I apparently don’t have a leak. I don’t have the only cause for the problem we actually know I have.

And I foolishly, FOOLISHLY, let myself hope. I hoped that we’d find an answer. I hoped that there would be a solution. I hoped that this would be the first step to stopping the pain. I hoped that there would be a light at the end of the tunnel.

Except.

Except there isn’t. There’s no answer. There’s no solution. And the tunnel has never been darker, more lonely or more full of hurt. And there’s no more hope. I’m done with hope. Hope has gotten me no where. It’s gotten me hurt, it’s made me weep.

And I don’t know where we go from here. This test has been my target, my goal. Just make it to this test. Just make it to this diagnosis and then figure things out. Once the diagnosis is determined, we can fix it and then I can try to go back to normal.

Except.

Except there is no diagnosis and so there’s nothing we can do. I don’t have a goal anymore. I am facing the future with outright fear, with panic. Because I cannot live like this. I have had a headache for 4 months. For 1/3 of this year. And there’s no answer. There’s nothing that can be done. I cannot live like this.

Except.

Except apparently that’s my only choice.

After days of phone tag with nuclear medicine, I finally got a call and got the cisternogram scheduled.

When the nurse gave me the information, I flipped open my iCal, plugged in the information about my appointment and realized, with a mix of happiness (over finally having it scheduled) and horror (over the timing), that the appointment was for Monday morning.

I started panicking. I have a make up test scheduled Thursday that I really want to get out of the way and I’m finally starting to get on top of my work. I was more than a little bummed. Add to that that my husband has work and my mom would have to do a lot work rescheduling to come, and that little panic turned into a tornado of concern. And I felt like I just didn’t have enough time to process or prepare. I had to contact teachers, I had to rearrange so much, and quickly to boot.

So then when I went back to iCal to check my next exam date, something about what I’d recorded about the cisternogram seemed wrong. And then it clicked. I had opened iCal and flipped ahead, not to next week, but to the week after that. Because I’m an idiot. So the test isn’t actually until the 23rd. Which is not in 3 days. It’s in 10.

Which is nice, because now I don’t have to push back this anatomy test another day.

BUT, it’s 7 extra days to worry. It’s now the week of Thanksgiving, which I’m supposed to spend with my in-laws, who do not deal well with my health issues (I’m refraining from commenting more here, because I’m trying to draw a line. Understand how painful this show of restraint is). And if I do have a leak from the lumbar puncture this time (which, the research says is HIGHLY likely since I had one last time), I’ll have to go to an emergency room to get it fixed or wait until the following Monday because of the holiday. And, probably what worries me the most is that my family is celebrating the day after Thanksgiving, which will be an issue if I can’t be upright because two hours in the car will be excruciating.

I’m trying to be thankful to finally have this test scheduled and be one step closer to some answers, but there are just a lot of things I’m concerned about.

And, on top of that, I’m back into this place of limbo that I hate SO much.

Because on the one hand, it’s absolutely fucking crazy to want something to be wrong with you. Seriously. That is the stuff of crazy people, and I know that.

But on the other hand, I’ve had a headache for almost 15 weeks. I just want my head to not hurt and if that means wishing for something to be wrong, something that we can fix, then that’s where my hope lies.

Yes, it’s crazy, but the idea of going through this trouble, having these tests, and going back to square one with nothing wrong is mentally devastating.

So for now I sit in limbo. With worry and m&ms. With pain and fear. With the tiniest bit of hope, that is rapidly dwindling.

I’m tired of this headache. This horrible horrible headache.

I’m tired of talking about it.

I’m tired of thinking about it.

I know you’re tired of hearing about it. Sorry.

I’m tired of playing phone tag with my neurologist’s office.

I’m tired of being jerked around by the nuclear medicine scheduling office and still not having the damn test scheduled, even though I was promised that it would be scheduled today.

I’m tired of worrying about the damn test.

I’m tired of taking pills I know won’t help.

I’m tired of having so many questions.

I’m tired of having so few answers.

I’m tired of being awake for half of the night.

I’m tired of feeling like a burden on the people in my life. On you who read.

I’m tired of people feeling sorry for me.

I’m tired of feeling sorry for me.

I’m tired of this pain.

I’m tired of my life, or what it has become.

Today was a rough day.

It began with a totally unimproved sore throat and a worse than normal headache with tingling all over the left side of my face. Next up was extra traffic that nearly caused me to be late for class. And that was time I desperately needed to use to study for my 10 am test.

And I was, as usual, totally stressed out. In the course of my 2 hour car ride I managed to talk myself into and out of quitting school about 30 times and finally managed to go back to my standard decision of making it through this semester (if possible) before making any rash decisions.

To my surprise, my morning class was awesome. Our guest lecturer was a hysterical older doctor (who said some awesomely crass things) and I literally did not stop laughing the entire hour and forty minutes. Before I knew it, it was test time.

So far this school year, each time I’ve been handed a test, or have come within hours or days of it, I have panicked to my core. I have not slept for days, I have been too nauseated to eat, I have freaked the hell out.

I did not freak out today.

The test was set before me and I thought to myself about what would happen if I failed.

And for the first time in my life, I realized that the answer was absolutely nothing. If I failed, life would go on. I’d figure it out. It simply wasn’t that big of a deal.

I am struggling, floundering, drowning. I feel it every moment of every day. I’m not getting used to it and I hope I never do.

But I am gaining perspective within my own life. If I failed today’s test (which I’m pretty sure I didn’t…), my life would move on. I’m realizing for the first time that there are many more significant things than this test grade, this class, this program. That I am more than this stupid test grade.

Maybe I’ll never be exactly who I was before this 13 week headache, before this emotional breakdown that I’m wading through.

But maybe I’ll be alright.

Okay, so I had my follow up appointment with the neurologist today. Which if you’ve ever read here or have ever glanced at my twitter stream, you probably couldn’t help but notice.

The fun began when I tried to check in, only to discover that I didn’t have an appointment. Which is curious because I know I scheduled one and even if I had the wrong date, I know that I made one. And since they had no appointment for me period, I’m sticking to my guns that I scheduled one today and they screwed up. I got a pretty significant guilt trip from the receptionist, but they agreed to see me.

I was able to skip the nurse practioner today (I’ve got nothing against her, but her exam was the most disorganized ADHD set of questions anyone has ever done and I was more than tired at this point) and go straight to the neurology fellow. He asked some questions and then went and got the doctor.

The doctor told me, as I told all of you, that the MRIs were normal. Which, as I may have mentioned before, is kind of a double edged sword. On the one hand, I don’t want anything to show up, I don’t want scary diagnoses. On the other hand, now we have nothing.

Well, almost.

When I saw the doctor two weeks ago, they looked at one of my eyes and saw that one of the borders of something (I want to say my optic nerve, but I’m not sure) was blurry. It wasn’t a huge cause for alarm and I sort of assumed it would either go away or just not be an issue.

When she checked today, it hadn’t improved. It hadn’t gotten significantly worse either, but for whatever reason, this surprised me. I’m so used to having subjective symptoms, ones that I feel but that cannot be seen by a doctor, but this is a decidedly objective finding. It’s not something I whined about. It’s something that was found without my guidance or bitching.

This objective finding led right into one of the things that the neurologist suspected might be the problem. A blurry border can indicate high pressure in my brain, a condition formally called Pseudotumor Cerebri. Don’t panic, it’s not a tumor. It’s just that the brain’s pressure is basically the way it would be if I did have a tumor. Which again, I don’t. (Seriously mom, I promise.)

It does show up on some MRIs, but the idea is that this has been going on for a while and because of that, we wouldn’t expect to see anything. So, so far, it fits. Too well, in my opinion.

So what now?

This is the part where my blood pressure rises, my heart pounds and I need to eat a crapload of flamin’ hot cheetos and cookies. Because the test that needs to be done, that is scheduled for October 6th (but is likely to be moved because I’m supposed to fly across the country for Daisy’s wedding on the 9th), is a lumbar puncture. A big ass needle, into my spinal canal, to see what my intracranial pressure is like. I repeat, BIG ASS NEEDLE into my SPINAL CANAL.

I’m not wild about it.

I need to stop Googling it. That’s for damn sure.

I know that it’s not likely that huge of a deal. I know that the headache that 1/3 of patients get would be a bitch, but hello, that’s my life, so it probably shouldn’t scare me as much as it does. I should be comforted that my doctor said I could drive home afterwards (I’m not). I should probably feel a lot of things about this, but frankly, scared is the ONLY thing I feel right now. Well, and a little like vomiting.

I’m going to call tomorrow to find out about the flying. And you should know that it will take every ounce of non-chicken-shitness to not just cancel the appointment I have and tell them that I’ll call back when I have a better idea of my schedule. And then never call again. Because this is freaking me out. I honestly feel MORE afraid of this lumbar puncture that I did of brain surgery. Like, significantly more.

I’m scared. I’m nervous. I want answers, but I want them without pain and fear. I want them to not come with scary diagnoses and tubing that will drain spinal fluid out of my brain.

I want answers, but I’m just not sure I want them at this cost. When is enough enough? When is it time to quit this search?

I know I kind of left you all hanging after the MRIs and it happened for a number of reasons.

I came home from the MRIs and immediately jumped into host mode and made a full Rosh Hashanah dinner for Slappy and his family. It was infinitely better than I imagined and his mother was not just gracious, she was wonderful. I’m still a little shocked.

And then I laid in bed all day Saturday, studying and relaxing. And of course, hurting. It’s what I do best these days. And today, I had bookclub in the afternoon and then came home to do work. I’ve gotten very little work done, which I think is a combination of being burnt out and of course, this headache.

And to be honest, I’m just tired of it all. I don’t even know what I should be hoping for at this point.

I mean, if the MRI shows something, then crap, because virtually nothing that can show up on the MRI won’t require some serious intervention. And by serious intervention, I mean brain surgery. And yes, it would be great if we could fix something, but fixing something means I’m going to have to go on the “flex” plan at school, which is a fancy way of saying that it’ll take me 4 effing years to finish instead of 3. If I don’t end up dropping out altogether.

On the other hand, if nothing shows up, then what do we have? Pain and more tests. PAIN and MORE TESTS.

There is no win here.

This is a lose/lose situation and it makes me want to crawl under the covers and never re-emerge. It makes me want to quit everything. It makes me want to scream.

I just don’t even know what to wish for anymore.

I want to tell you all about about a really amazingly momentous night tonight was. But truly, this is potentially the worst headache I’ve ever had in my life.

I’m okay for now (I live with a doctor, we’ll be safe), but I’m just going to bed. And hoping beyond hope that tomorrow is better. I honestly can’t fathom how it could possibly feel worse.

So, yea, that title sound way dirtier than I meant for it to.  But it makes me giggle, because evidently I’m a 12 year old boy, and I don’t feel like changing it.

In the past 12 days of painful hell, I have been a little lot whiny, mostly on twitter.  Don’t get me wrong, I’m whining some in real life too, but not nearly as much as you might think.  I don’t like to talk about it because I can’t deal with sympathy well, and it is, understandably, everyone’s first reaction.

After a few days of pain, Slappy suggested that I get a massage.  I called the places near us and none were able to take me on short notice and so I gave up.  As the twitter bitching (twitching?) continued, Heather brought up the massages again and one thing led to another, and eventually she had booked us both massages for Thursday afternoon.  I was stoked.

Today finally arrived and I left work as soon as I was done for the day and rushed into traffic.  I was fighting the clock because it was already 4 and our appointments were at 4:15.  I forgot, yet again, how incredibly unreliable the iPhone maps program is when I need it most, and missed the place like 12 times.  On the 13th try I saw it and even managed to find a parking lot and then I literally took off running towards the place.  I was clearly in the relaxed mode already.

Heather wasn’t in the waiting area when I got in and I assumed that she’d already been taken back.  I checked in and was told that I was actually early because, hey, my appointment was really at 4:45.  I waited in agony (apparently my head got the memo that we were trying to fix it and needed to up the pain levels in anticipation) and the moment Heather arrived (heh, on time), I got called back.

As I walked to the back, the masseuse asked me if I needed to use the bathroom.  I considered it and determined that I would be fine for an hour and the massage got under way.  It was glorious.  So glorious, in fact, that at one point, I drooled.  Look, you’re lying with your face down in a hole and it happens.  I made it all the better by making a totally nasty slurping noise afterwards to reign in the rest of my saliva.  I won’t go into the details, but perhaps I had a similar problem with snot.  Perhaps, I said.

After about 30 minutes of massaging, I realized that I needed to pee.  I was lying on my stomach, which didn’t much help and just as the urge hit, the masseuse moved down to work on my legs.  Much of the leg working consisted of shaking them and moving them all around, which feels SPECTACULAR on a full bladder.  I considered in my mind whether I should ask for a break when she rolled me over and managed to stifle a noise when she started massaging my lower back into my painful bladder.

I carefully considered my options and decided to wait it out.  Surely the hour was almost up, and before I knew it, she had rolled me over and was working on my arms.  I had a renewed sense of relaxation and hope of not making a complete ass of myself.  Just as I reached this level of zen, the iPod that had been playing a lovely instrumental tune switched to the sounds of RAIN.

RUNNING WATER.

Seriously.  And with the change in song, the masseuse moved back to my legs and began, with vigor, to shake them about.  After what felt like an eternity, but was probably only 5 minutes of running freaking water and bladder freaking contractions, she told me thank you and flipped the light on.

It was all I could do to not RUN naked from my room to the bathroom.  But since I hope to return to this establishment, I didn’t.  I put my clothes on and ran to the bathroom.  Which was, of course, occupied.  And the whole time I’m waiting, I’m thinking, holy crap, I’m going to pee my pants in this hallway and then I’ll never be able to see Heather again ever.  After another eternity, the bathroom door opened, I ran in and found relief.  I also found out that I’d put my shirt on backwards AND inside out, which is a special feat considering that it was a V-neck.  I fixed it and went out to the front.

It wasn’t until Heather asked how it was that I realized that the massage had actually helped.  I had enjoyed it tremendously, despite the fear of peeing on the table and it was the only thing besides just lying in bed, that seemed to make any difference in the tremendous pain in my head.

It’s been a few hours and the pain has resumed, the hand is still sucktacular and my tongue is still tingling like that’s its job, but for the first time in 12 days, I had a small decrease in pain (for a while) and for that, I am thrilled.  For that, I’ll do just about anything.  Even almost pee my pants.  Almost.