Archive for the ‘The Brain’ Category

I realized the other day that, hey, it’s October. I’m not sure when that happened, okay, I mean, I am sure when it happened, but it snuck up on me.

On October 6th, 2009, I waited in a doctor’s office waiting room, nervously, with my mom and husband. I was called back to a small room, I put on a gown and was positioned on my side.

And then I had my first lumbar puncture (first and fifth for how many tries it took).

We left the doctor’s office with a beacon of hope. We found out that I had low pressure, that I had intracranial hypotension. We had a diagnosis and a theory on a cause. We had another test that would hopefully confirm our guess and lead us to treatment.

I know it sounds a little crazy, but I was so happy.

We had a preliminary diagnosis. We were told that it could be treated. And yea, I was scared and in pain, but I was hopeful. For the first time in several months we were on track to sort this out.

Then the next test that was supposed to show us the next step came back negative. The headache continued.

Then next test came back negative too, there were no leaks, but my intracranial pressure was even lower. It was getting worse, not better. The headache continued.

The next treatment didn’t work at all. The headache continued.

I walked out of my neurologist’s office a year ago thinking that we were at the beginning of the end of this. I remember the feeling of elation, of knowing that we were going to figure this out.

And now, a year later. The elation is faded. The hope is dwindling. The diagnosis is just a label. It hasn’t been a doorway to treatment. It hasn’t been a start of something better or a key to successful treatment. It’s just another diagnosis, another way to label this hell that can’t be solved.

I am frustrated. I’m tired of fighting. I’m tired of this life, of this roller coaster. Of thinking we’re on the right track only to discover that we’re stalled, we haven’t moved an inch and so much of life has passed me by already. I’m tired of it all.

I can’t imagine another year of this. I can’t imagine another year of not knowing what to do, of not knowing what’s really wrong, of not knowing the solution. I can’t imagine writing on October 6th next year to tell you that it’s now been 2 years and nothing has changed.

That sentence scares the hell out of me.

I don’t want more of these anniversary celebrations. I don’t want to wrack up more years of pain, more years of failure. I don’t want to realize that things have gotten worse instead of better.

I want the hope I had at this time last year.

I want to be better.

I want this to end.

I woke up this morning about 10 minutes before my alarm. I didn’t have anywhere to go this morning, but if I sleep too late on Sundays, I can’t get to bed early enough to not be a zombie on Monday. It’s not at all uncommon for me to wake up early, but usually it’s because my cat needs to eat right! now! or because my husband has taken over all the covers and I’m freezing. Not this morning.

This morning I woke up from pain. And it literally took my breath away.

I can’t remember the last time I had pain this exquisite. Pain that makes you stop everything you’re doing and wonder if you’re even alive anymore. Pain that defies all adjectives and all explanation. It was potentially the worst headache I’ve ever had, even rivaling those from the spinal fluid leaks last fall and winter.

It got worse when I laid flat, which is an entirely new and disconcerting problem. I also had horrible ringing in my ears, which isn’t new, it’s just growing both in aggression and the levels upon which it bugs the crap out of me.

And of course, my husband was on call today. Because I basically live Murphy’s Law. My doctor husband couldn’t ever have a day off when something like this happens.

For the first three hours of consciousness this morning, I went back and forth about going to an emergency room. Because this headache felt like an emergency. The dizziness, the clumsiness, the general cloudiness was much worse than usual and the pain was incredible. If I could’ve driven myself to the hospital, I might have, but I knew that getting behind the wheel of a car was not a good idea for me or anyone else in the area.

So I waited it out. Sitting up in bed, in a dark room, willing the pain to get better. 10 hours later, it’s not better. The dizziness and weakness are, but the pain is still here. It is unbelievable. It is unrelenting.

I’m not at a hospital because I know the drill. I don’t want narcotics because a) they won’t work, b) they make me feel awful and so they’ll do a CT of my brain, it’ll come back mostly normal and they’ll tell me to follow up with a neurologist. I don’t need to spend that much money or time being told something I already know. I don’t need more radiation to my brain, I don’t need to be reminded that I need to see a neurologist. Every single day is a reminder of that. And if I could make time pass faster and get these next 5.5 weeks over, I would.

But I can’t.

I can only try to do what I can each day. I can only pick myself back up and do my best to pretend like I’m not hurting. And on the days when I can’t do that, I can lay in bed and hope that the next day is better.

Because on days like today it’s hard to imagine it could be worse.

I didn’t think this day would come.

I hoped it wouldn’t, but feared it would. Somewhere in the back of my head I always knew it was a possibility and then later, a probability, but I’m still surprised.

As of today, my head has hurt every single moment of every single day for a year.

A. whole. year.

To be honest with you, I sometimes struggle to remember what it was like before this past year, what it was like to not have pain. Because this pain is interwoven into every aspect of my life now. It is a part of me like my hair color. Like my love of chocolate. I’m Katie, I have chronic pain, I also like cats.

I don’t remember what it’s like to sleep through a whole night. I don’t remember what it’s like to not carry drugs with me at all times, drugs that won’t take away the headache, but may mitigate the dizziness or the nausea. I don’t remember my life before headaches, I just remember that things used to feel easier. I don’t remember what it’s like to not have to worry about what I might not be able to manage the next week, the next day, the next hour.

I don’t remember what it’s like to not have my life punctuated with pain.

There have been good things this year. There are victories that have been made sweeter by the fact that they have been hard fought. I have survived what would be a tough year without the complication of pain. But I have survived that year, with pain, in spite of pain, in the face of pain. I have managed when I probably should’ve quit, I have struggled and fought back. I have achieved what I was told I wouldn’t, and I am proud of myself.

And for that perspective, I am thankful.

But I am also tired.

I’m tired of fighting, of everything taking more energy than it should. I’m tired of always trekking uphill when I should be on level ground. I’m exhausted from my life, from surviving this past year. I’m tired of fighting everything, all the time.

I’m tired of life being a fight.

I know that life isn’t meant to be easy and if it was then the joys would be less joyful, the memories less cherished. I know that it’s the hard parts that give perspective to the easy parts. I know all of this and all the other platitudes. And yet, there is so much about this past year, about this life, that I don’t know.

I have been shaped into a different person by this year, one that I don’t fully know, one that I often don’t recognize. The person I am is unpredictable, often fragile. The person I am is sometimes sad, she hides in plain sight, she paints on a happy face when she is miserable inside. The person I am is scared of living more than anything else.

I never thought I would live through a year with constant pain. Partially because I didn’t think I could survive, but also because all along, I imagined that there would be an end point. There would be a day when it stopped, or there would be a solution. That day, that solution never came. I don’t know if this is just the first in many years of pain, I don’t know if it will all stop tomorrow.

I am not giving up yet.

I’m not quitting even though many days that would be the easiest thing to do.

I’m not going to adopt a new way of life or suddenly become a person I’m not.

I’m just going to live tomorrow like I have the last 365 days. With fear, with determination, with pain.

And with the hope that maybe the next day, the next week, the next month and now the next year, will be different.

Today has been a duplicate of yesterday except that the headache didn’t wake me up at 4 in the morning, but after a restless night, it was there in all it’s unholy painful glory first thing this morning. Again, I made it through work, but it was a chore. A miserable chore.

I honestly just don’t know what to do with myself. I really don’t. I’ve tried everything I know, everything I’ve heard that doesn’t cost a bunch of money. I’ve tried every medication suggested.

I do not know what to do.

I have always said that I wouldn’t let pain stop me, that I would manage, succeed in spite of it. That has always been my plan, my mantra. I’m doing my very best to minimize the whining, but I don’t know if I can succeed in spite of this pain. I don’t know if I can make it through another day like today, like yesterday. I don’t know how to manage my life when it feels like this. I feel like all the practice, all the pep talks, all the work so far hasn’t prepared me for this kind of pain, for this challenge.

I sent my husband a text earlier today and I’m just going to tell you all the same.

I cannot live like this, I cannot deal with this. And I need to do something, anything, to make it stop.

I have until August 14th to see any doctors in the Los Angeles area, after that my insurance changes to Aetna and I’m not sure what my limits will be. But I’m officially taking suggestions.

Let’s assume that we’re less concerned about it being a problem that needs a Chiari specialist and more concerned with it being absolutely blinding, relentless headache pain. I need your help.

Please, help me find a way to make this stop.

It has been a rough day.

I woke up at 4 in the morning with a MASSIVE headache. It was the kind of pain that makes you pause and wonder if the world is ending. The kind of pain that makes it hard to breathe, hard to move. The kind of headache that makes you sit up at 4 in the morning and wonder if you have freaking meningitis. That’s how bad it was.

I managed to shove some pills into my mouth to deal with some of the side effects of the headache (because there’s just nothing that helps the pain) and I attempted to go back to sleep. At best, falling back to sleep would’ve been tough with that amount of pain, but when you add an adorable little cat who really believes that 4 in the morning was the most perfect! time! ever! to eat and in protest of not eating decides to climb in and out and in and out and IN AND OUT of the blinds 20 million times, well, sleep is nearly impossible.

That did not make the day any easier.

Looking at this month, I’m starting to worry. I haven’t had this many bad days in a long time. It doesn’t seem to be related to stress, especially considering my weekends are every bit as bad as my weekdays. It doesn’t seem to be related to difficulty of work because light days are every bit as bad as difficult ones. It doesn’t seem to be related to anything.

But it’s getting worse. It’s getting a lot worse.

The headache I had in the middle of the night last night was the worst headache I’ve ever had that wasn’t the result of a lumbar puncture and subsequent spinal fluid leak. It was terrifying because it came out of no where and awakened me from a dead sleep (again, about having a freaking baby. My subconscious has SUCH issues). Thankfully the pain did go down some and I was able to go to work, but all day I have felt miserable. All morning I felt like puking, and all afternoon I’ve just wanted to sleep. Or cry. Or both.

I don’t know what to do at this point. I don’t know where to go, who to call, what to try. I don’t know how to manage when the pain is like this. I made it through the day today, but it was by far the toughest thing I’ve done in a long time.

I can’t keep doing this. For the first time in a while, I’m genuinely scared of tomorrow.

To my very core, I’m terrified of that pain, of this pain. Of more pain.

I saw a new patient today at my clinical. Her referral listed a simple diagnosis, but it was apparent from the moment she walked in that she’d be anything but simple.

She was near to my age, lived near me and well, the more I read on her chart, the more I found that we had in common. This girl who was so much like me on paper, was also obviously in a lot of pain. She later told me that on a scale of 0 to 10, her pain was a 30. And you know what? I believed her. There are many people who say their pain is a 12 out of 10, and it’s not that I don’t believe them, but I often wonder if I could tolerate their pain. You know? I wonder if their 10 is the same as my 10.

Not this girl.

I looked this girl in the eye and I saw bits of myself. I saw sadness and defeat. I saw hope that was dwindling, but still present. But I also saw pain that if I’m lucky, I will never understand. I saw hardship that she doesn’t deserve, that I’m not sure she can handle, that I’m not sure anyone can handle.

I wanted to take her hand and tell her all about the chronic pain resources I know, about all the wonderful people on the internet, but I couldn’t. I couldn’t for a number of reasons, but mostly because I was so completely beside myself that I couldn’t hardly utter any words besides the ones I have rehearsed in my head hundreds of times for patient interviews.

I looked this girl in the eye, I heard about her pain and I wanted to cry. I wanted to cry for her. Because I saw the fear in her eyes, and I just sat there, feeling impotent. Feeling helpless. I can’t help this girl. It’s entirely possible that no one can, but I’m going to have to be one of the first to break that reality to her.

The more I’ve thought about this girl, the more I’ve considered what happened today, what she told me, what I heard and saw, the more I understand some of the reactions I get from people, from doctors, from my own family. I saw someone suffer today. I had someone tell me that she’d do anything to make her pain stop, I had someone say to me sentences that I’ve said to others, that I’ve written here in my most desperate hours.

I understand things now.

I understand why people walk away from those in pain. It’s terrifying to watch someone shrink from pain. And it’s soul crushing to not be able to do anything for it.

I understand why doctors fire patients, why some respond to chronic pain patients the way they do. It’s horrible to see something you don’t know much about, that you can’t fix. That no book or lecture can ever help you understand the realities of.

I understand why family and friends cry for those who are suffering. It’s because sometimes it’s all you can do.

I am not saying that I understand this girl’s pain, because if I put my pain on the same scale as hers, even tonight when it’s relentless and gnawing, I don’t think that it would hold a candle to hers. But I understand a lot of what she’s feeling right now, and some of what she’s gone through and will soon face.

And for the first time, I understand how it feels to watch someone suffer. I understand how helpless you feel when you stare pain in the eye and have no answer, no help.

I understand now.

I almost wish that I didn’t.

So after reading some of the comments and giving myself some time, I’ve come to realize that I totally wasn’t really facing anything yesterday. As it turns out, it’s pretty easy to face a scary future on a good day, and yesterday was a good day.

Today? Not such a good day.

Today my headache is massive. Today we more or less established that the abdominal binder, one of the two things that we want to try to fix this headache, isn’t the answer, isn’t even helping. Today I’m facing a different reality than yesterday.

And this reality? It totally sucks.

But it’s probably a good taste of a reality I had not anticipated.

I can get by on days when the pain is not so bad, but those days are never guaranteed, and they are not as frequent as I’d like. And frankly, those days seem to be fading away. Each week things seem to get worse, instead of better. Each week I seem to have more days with undeniable pain.

If we’re being completely honest, I don’t know if I can manage all the things I need to manage on nights like this. Especially as these nights become more the norm and less the exception. I hurt right now in a way that defies adjectives, or at least the ones that aren’t just expletives.

Everything feels worse, nothing feels manageable at all.

It’s nights and pain like this that make me consider my life, make me consider if I can even cope.

I’m reaffirmed in my decision to keep looking for neurologists. I am being hard on my current one because she hasn’t figured out the answer to all my problems in two visits. And that said, I also know that there isn’t really an answer to them, but the issues run deeper. It’s not just about whether she can fix me. I need to have a neurologist for the rest of my life (man that sucked to admit) and I don’t see myself having the relationship I need, a relationship where I can feel safe in giving up control, with this neurologist.

I can’t control what happens with my head. I have no say in that and that’s potentially the most difficult part aside from the blinding pain. But I can control who helps me, who directs my care, and maybe that little bit of control is a key to finding a way to manage my life.

If I’m going to deal with this pain, this headache, forever, which is a reality I don’t want to even consider, let alone face, I need to feel comfortable with my caregivers. I need to feel like that doctor might find the miracle. I need to feel hopeful. And though this doctor is lovely and kind and knowledgeable, I don’t feel that hope, that possibility of a miracle cure. I need that, it’s the only way I can keep going, that I can even consider getting up tomorrow morning and trying again.

Maybe holding out for that hope is just further proof that I’m not really facing the realities that I thought I was. But try as I might (and lo, I have tried), I can’t seem to ditch hope.

I can’t seem to not wish for something more, something better than this. Better than these last 11 months, better than tonight.

The neurologist’s visit was…interesting.

I left my house at 7 for my 9:15 appointment and I arrived at the doctor at 10. The 3 hours it took me to go those 46 miles, which did some really fantastic things to my stress and headache levels, trust me. Even the doctor noticed that I looked subdued when she finally saw me. Frankly, the fact that I was even upright by that point made me want a freaking trophy.

The appointment itself was pretty quick. I had decided before I went in there that I needed a medication break. I need to be clear-ish headed at my clinical and that means no crazy meds right now. I can’t deal with side effects and hands-on learning all day long. It’s just too much.

The doctor wasn’t thrilled, to be honest, she’s still really displeased with my education/career choice, but she understood about the medication/side effects and thought it was a reasonable idea.

I had also brought with me an article that a friend found about a woman with the same symptoms as me and the exact same opening pressure who was determined to have a Vitamin A deficiency. (Vitamin A is important in the production of CSF, so logically, it makes sense that low Vitamin A = low pressure). We talked briefly and she said for now to just try a multi-vitamin and we’d reassess things in a few months.

The other option that I asked about was one that she and my neurosurgeon both mentioned in passing. Wearing a tight brace around my stomach should increase the pressure in my head via some mechanisms that are not all that important. She agreed it was worth a try, gave me a few brands to look at.

And that was pretty much it. Literally. That was pretty much it.

I’m not really sure how I feel about it.

On the one hand, I’m trying new outside of the box things, which I appreciate. On the other, I feel like I’m being my own doctor right now. I don’t fault my doctor for this, but I guess I was hoping that when I came in she’d have some ideas stacked up and, well, she really didn’t have anything. If I hadn’t suggested the vitamin and the binder, I’m almost entirely sure they never would’ve been considered, period.

And now I’m mostly just considering things. Because come August, I have to commit again. I only get one neurology referral for the next year and I’m honestly not sure if this is the right doctor for me. She’s very kind and I’m sure very knowledgeable, but I don’t know, there’s something that just doesn’t fit. It’s hard to articulate this because I honestly don’t even know what it is. I just feel like I’m not going to get anywhere with this doctor.

But then there’s the possibility that it has nothing to do with the doctor at all.

There may not be a neurologist who is a good fit. There may not be one who is knowledgeable in this area because “this area” of neurology isn’t really an area at all. It’s just me. It’s just me, not fitting into any categories of pain that are understood. Not falling into any protocols that could help. It’s just me.

And that is a little scary.

But it’s life. And if there’s anything I’ve learned in these past 11 months, it’s that life is scary. And so I’m just going to keep moving forward, keep thinking, keep researching, keep learning. Keep facing this fear.

This fear that is my future, my life. My everything.

Tomorrow I will drive 46 miles to a doctor’s office to see a neurologist who has only met me once.
My hope is that this meeting will go better than the last.

Tomorrow I will present her with an article that offers a cause and a solution we haven’t yet considered.
My hope is that the solution might be as simple as taking a vitamin.

Tomorrow I will show my doctor a headache journal where I haven’t gone more than 4 days without a headache that I rank as bad or worse than an 8/10.
My hope is that next month will look different. That it will look better.

Tomorrow I will suggest another non-medicinal option for my head.
My hope is that we can start thinking outside the box. That relief is outside the box.

Tomorrow I will…hope.

On the internet, I’ve encountered hundreds of people with the same brain/skull issues that I have. I’ve emailed, facebook chatted, tweeted, commented on blogs. I’ve always been virtually surrounded by those who have experience similar things, who understand the trials and tribulations of Chiari.

Today, for the first time, I met someone in real life with it.

It was just a coincidence. I’ve been helping treat this woman for two weeks now and she mentioned something about brain surgery and it was then that I noticed her very faint scar. We shared stories and compared symptoms. She had her surgery in 1995 and has been symptom free since. I told her my surgery was in 2007 and I kind of left it at that. It’s hard to talk, in person, about the way things are now. It’s even more difficult when you’re supposed to be the health care professional, not the patient.

When I walked out of her room, I felt conflicted. It was sort of awesome to have finally met another person with chiari, to have heard about her struggles and how similar our symptoms were. But at the same time, it was discouraging and a little sad that this woman had her surgery all these years ago and now has no headaches, no neurological symptoms. She’s fine. She’s recovered and normal.

I’m not. And frankly, that sucks.

I have an appointment with my neurologist/pain management doctor on Tuesday. I already rescheduled it because it was supposed to be in my first week of my internship and I’ve been tempted to reschedule again. But I know that the more I push it back, the less chance I have of going. And while my expectations for any success with this doctor are low (which is mostly unrelated to the doctor and more related to the reality I’ve accepted), I also can’t shut that door yet.

I did try the medication she prescribed. I hated it. Hate hate hated it. I wasn’t been able to increase from the original dosage because, even though it’s supposed to raise my blood pressure, all it did was make me dizzy all the time, which is more of a symptom of low blood pressure, ironically. I have never had as much difficulty with unrelenting dizziness and lightheadedness than I had while on that medication and I knew that there was just no way I’d be able to be competent and safe at my clinical if I continued to take it. I didn’t get to give it as much time as I wanted to, but it was somewhat beyond my control, and unfortunate.

I expect to get a lecture from the doctor about not calling sooner, not telling her about the reaction to the drug, and I deserve it. But I want to talk to her, face-to-face about things. I don’t just want to switch to the other medication she had on the list of (2) things that might stand any chance of possibly doing anything for this headache. I want to discuss some articles that a friend found and see if she can run a few simple blood tests to rule out something we hadn’t yet considered.

What I really want is to walk into her office and have her figure out the root of this 11 month old headache and the ultimate answer to it. But, I know that’s not realistic, I know that won’t happen and so I’m steeling myself for that lecture, for disappointment, for another dose of reality.

And hoping that at some point, I’ll get the pain free future that my patient has. That I’ll have a real answer, the kind that closes this chapter of pain and misery.