Archive for the ‘The Brain’ Category

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.

I’m not really sure where to start this.

I saw the new doctor today. She’s a neurologist and a pain management specialist. I’m not over-stating things when I say that she’s really my last shot at getting this fixed. I’ve gone to 5 neurologists, 2 neurosurgeons and an ear, nose and throat doctor. There’s no one left to see.

I had to wait for a little under an hour for my 2:30 appointment, but I was rewarded with almost 2 hours of one-on-one time with the doctor. She was very kind, she hugged me (side note: I’m not really a hugger), and she started taking a very thorough, if a little scattered, medical history.

She asked me what I was in school for and when I told her she got a funny look on her face. And then she looked and me and said, “I think that’s a bad idea.” It was her belief that I could not be successful at this career with chronic pain. I explained to her my plan and how it was important and my passion and all that, and she just nodded and said she wished I’d consider it. That she really thought that I should quit school.

To say that was discouraging would be a vast understatement.

She moved on. We discussed my pre-surgery headaches and symptoms, my post-surgery symptoms, she looked at a few MRIs and then she did a neurological exam which proved interesting. There are a series of tests where, if positive, point to a problem in the brain or spinal cord. And I had all of them. Yet, as she explained, there appears to be nothing wrong with my brain or spinal cord (well, almost, I’ll get to that shortly).

When we finally went over everything she looked me in the eye and said she didn’t know. It looks like I might have a syrinx in my thoracic spine, but that shouldn’t present itself as these headaches, so while interesting, that’s kind of useless.

She said, in a slightly nicer way, that I am a mess, and that all she could really do was “grasp at straws.” On one level I appreciate her honesty. I’d rather know that you’re stumped than have you pretend like you know what you’re doing when you don’t. On the other hand, fuck. 10 months and still no answer.

I’m not sure how I ended up with that expectation, but somehow I’d gotten it into my head that this would be it. That she would do this history and physical and the answer would lay right before our eyes. That there would be a diagnosis that fit and a treatment that had a good chance of working. That this doctor, this appointment, would be it.

It wasn’t.

She prescribed a medication that scares me. It raises my blood pressure and that should theoretically raise the pressure in my head. And since we’re still assuming that the problem is low brain pressure, it’s sound physiological reasoning.

The scary part is in the the blood pressure part. Blood pressure isn’t something that you really play around with. Our bodies don’t tolerate big changes well and the effects of increased blood pressure can be catastrophic, to put it mildly. And nevermind the fact that it’s almost guaranteed to make me puke in the mornings. Which is obviously something I want to deal with right now.

The thing is, I think this doctor is actually good. I think she’s probably excellent at what she does. It’s me that’s the problem.

I went to a headache clinic and I walked away with straws.

I have had a headache for 10 months that no one, not experts in their fields, not neurosurgeons who have published dozens of papers, not anyone, can understand or treat. This drug may work, it may not. Either way, I’m still walking away with no clear idea of what’s wrong. I can’t take this medication for life, I can’t rely on it to fix all my problems. It’s a patch on a tire that’s blown out. It’s a bandaid on a severed carotid artery.

I feel like I’ve been punched in the stomach for the thousandth time. I don’t know how many times I can go to doctors and be told that they don’t know. How many times I can be told that my case it too complicated, that there isn’t an easy answer. I don’t even really need the answer to be easy, just any answer that might actually be correct. I would take any diagnosis, literally ANY one today, if it meant we had a plan, that someone else, anywhere else, had ever been through this and came out the other side.

At this point, I feel so hopeless I can hardly even function. I want to wallow and cry. I want to quit school like the doctor suggested and give up everything. I can’t keep doing this. I can’t keep fighting. I can’t keep being told there’s no answer. I can’t.

There has to be an answer.

I just don’t think that we’re going to find it.

And now I guess I have to try and make peace with that.

I woke up with a start at 4:55 this morning. And I realized pretty quickly that it was because of a stomachache. Not queasy feeling, just pain. And no matter how hard I tried, I could not get back to sleep to enjoy those last 30 minutes of rest. It didn’t help that the sleep I had gotten wasn’t particularly good to begin with.

I don’t handle bad days particularly well on a good night of sleep, but on less than 6 hours of crappy sleep, it ended up being just one ingredient in a recipe for failure.

I got ready and went to school despite the stomachache. The whole morning was just off. The details and reasons aren’t important, but I just felt, well, invisible. And I left school feeling weighted down. I hoped it was just the tired and moved on despite it.

I raced to the imaging center near my neurosurgeon’s office to pick up the last set of MRIs that I hadn’t gotten so that I could give a mostly complete to the new neurologist. From there, I went to the new doctor’s office, but for all that racing, was an hour early.

So I sat down at a coffee shop and did some studying.

My appointment was at 1:45, but since I hadn’t gotten the packet of paperwork I was supposed to get and fill out prior to the appointment, I decided to head in early so I could get that taken care of. At 1:15, I walked to the office door, only to realize that, oh hey, they had moved to a different building. A different building several miles away.

GAH.

So I (paid for parking and) got in my car and drove to the new office, hoping the traffic wouldn’t have picked up in the thirty minutes I sat wasting time. And the more I drove the more I realized that these streets looked an awful lot like the ones I had been on when I went to pick up my MRIs the first time.

And well, as it turns out, those were the very same streets. Because basically I drove around in a giant almost circle. Sigh.

I wish that this is the part where I told you all about how the new doctor turned my crappy day around. I really do. But I’m not going to, because I’m not feeling like writing fantasy tonight.

I found the office and tried to check in. I say tried because apparently I didn’t have an appointment. According to them, I had never called, never given all my information, never set up this appointment or had to rearrange a whole bunch of school stuff to make this work. Nope, never took place.

And instead of giving me the benefit of the doubt, instead of offering to squeeze me in or make it work, they made me feel uncomfortable. Before long, I felt shame burning on my cheeks. The more they sighed and looked for any information about me, the more I found myself doubting what I had done. Wondering if I had constructed the whole thing. And before I could stop myself, I was apologizing, in front of them, with tears in my eyes.

In the end, I filled out a piece of paper with all the information I had already given them and was given an appointment next Wednesday. And then I drove home, in the same pain I arrived in, with big heavy sobs of frustration and hopelessness.

It’s already difficult for me to find hope right now. It’s difficult for me to see the light at the end of this tunnel. And yet, last night, I let myself do it again. I let hope in, I let myself wish, for just a moment, that things were going to change starting today. And just like every other time, I am left feeling devastated.

I can’t keep doing this. I can’t keep trying to be positive, to be optimistic when it just results in my hopes being shattered again and again. I can’t keep dreaming of all these wonderful things because when faced with reality, it’s crushing.

I’m done putting myself out there just to be hurt. I’m done wishing, I’m done hoping for more. There isn’t anything more. Even things that seem like they’re a sure thing, aren’t. I should know that by now.

And maybe this day will be what sets me free, what stops the emotional hurt from piling onto the physical pain.

Because I’m done.

Tomorrow is two pretty important things. Well, I suppose important is kind of relative. Important to me, I guess.

Tomorrow is another month in the bank of perpetual headaches. Ten months of headaches tomorrow. Ten months. I live this every day and I still can’t hardly believe that it’s been 10 months since this all started.

Tomorrow is also my appointment with the latest neurologist who also happens to be a pain management doctor. I’m hopeful, but I’m trying to temper my hope with reality. I think that I’m on the right road, that this doctor, unlike some of the others, may be able to afford me a balance between not giving up on finding/treating the cause of the pain and also dealing with it in the meantime.

I also know that it won’t be that easy. It rarely is.

Look at a list of medications for chronic pain. Chances are I’ve tried them all. Some more than once.

Look at a list of suggestions of ways to mediate pain without medication. I’ve tried nearly all of those too.

The options seem very narrow. I am sure that there are ones I don’t know about, I’m not a doctor (I just play one on twitter a lot of the time) but I’m trying to be a realist.

I want this to work, I really do, but I also know that if history is any indication, it very well may not. I’ve seen five neurologists since my Chiari diagnosis in 2006 and only one (and maybe a half) of them have ever taken me seriously, haven’t completely given up, or told me I needed to find someone else because they can’t help me. That track record doesn’t exactly inspire endless hope and optimism.

But even I recognize that tomorrow holds potential. It holds potential disappointment and potential success. It holds potential to wallow in an another month of pain without relief, it holds the potential to be the start of the end of the pain.

I’m scared, and sad and hopeful and humbled by tomorrow, by what it means, by what it might hold. And for tonight I’m going to try to stick with the hope that in marking 10 months with a new doctor, I might also mark the end of this onslaught of pain. The end of nights like two this weekend where I lay on my couch in tears. The end of blog posts mentioning that another month has past, that another month has been lost to pain.

Tonight, the potential of tomorrow overwhelms me. We’ll see what the reality is all too soon.

I don’t consider myself much of a hypochondriac. Or at least, not out loud. If we’re being perfectly honest, I constantly think that I have any number of exotic diseases in my head, but rarely actually admit them out loud. Or when I do admit them out loud, I’m usually joking.

(That was a lot of “ors” in one sentence, eh?)

And I’m trying to keep this latest one in my head, but well, I can’t. Mostly because other people are noticing it too.

In the past week or so, there seems to be a growing disconnect between my brain and my hands. It’s shown up when writing notes in class, texting, typing, anywhere. Anytime I’m trying to write out words. They come out backwards or with spelling errors, or sometimes, they’re the absolute wrong word. The latter is becoming the most common.

And the craziest part is that I re-read the words and sentences several times and do not notice the error until someone else points it out.

Exhibit A

(Important note: the time stamp is 2 hours ahead, I never changed my settings after moving from New Orleans).

So first, I kept typing tendons as tendongs, then moved onto tendonds. Then I went ahead and used the completely wrong version of the verb to do. And I didn’t notice AT ALL. Someone else had to show it to me.

Exhibit B

These are my notes from today. Note the double of the word loading, once mispelled, and the misspelling of high and stress and probably. I’m not going to pretend like my notes are usually legible or always spelled right, but this wasn’t written rapidly and it, like me, is a hot mess.

I do have a doctor’s appointment a week from Wednesday and I want to talk about this with the new doctor, but I feel like I’m being ridiculous. Yet, at the same time, to say I’m concerned would be an understatement. This just isn’t like me, and no matter how hard I concentrate, it keeps happening.

I was willing to credit it to lack of sleep, but I slept for 10 hours last night and was wide awake through class today. I was willing to credit it only to pain, but the headache wasn’t as bad this afternoon. There just doesn’t seem to be a rhyme or reason. Except that my brain is increasingly jacked up.

Logically I know I’m reading too much into this, but also, I know that something is different. And it’s affecting (effecting?) my ability to do work, to think, to communicate and learn. And it’s both annoying and a little scary.

School and life haven’t been easy lately, but communicating with other people, focusing on school and working hard have been the few things I’ve held onto to maintain my sanity. And as time passes, it seems like I’m losing those too.

And with them, my patience, sanity and the very little ability to cope that I still have.