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 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.

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.

And yet, that’s exactly what I’m going to do.

I’ve spent hours researching, combing through articles, trying to find literature that gives any evidence that I have a spinal fluid leak. But simply put, there aren’t any articles, there isn’t any evidence. My symptoms do not match up with a leak. The protein in my CSF isn’t high, the headache has lasted for over 9 months when a leak should resolve on it’s own much, much faster.

And most importantly, the other patch didn’t stop the pain. I think that the brief partial relief of that patch was almost entirely because shooting that much blood into my epidural space caused my pressure to increase. Which makes sense when you realize that as soon as the back pain from the pressure went down, the headache came back. It basically makes perfect sense.

I have intracranial hypotension, but I do not have a spinal fluid leak. My brain is what’s wrong. I’m not producing the adequate amount of spinal fluid, and that’s why my head hurts.

And that’s really why I’m saying no. Of course, I also don’t want to give up my only 4 days of vacation between semesters to an incredibly painful procedure. I don’t want to spend the thousands of dollars that this procedure costs. I don’t want to deal with the side effects and extra pain that isn’t helping me in any way.

And if I’m being completely honest, I don’t want to exhaust this option. I don’t want another treatment to fail. Because it means that there’s almost nothing left we can do.

And yet I’ve spent hours today, in tears, because the alternative isn’t good either.

My insurance only allows one referral per specialty per year, and I’ve already used up my neurologist and neurosurgeon this year. Going back to the old neurologist is not an option because she’s already thrown her hands up in confusion with my case. And going back to the neurosurgeon right now isn’t really an option either. He has given me 3 choices, and frankly, none of them work for me right now. It’s not his fault, he’s doing everything he can.

So what this boils down to is that I’m giving up. For now.

I am not saying that I’ll never try again. I’m not saying that I’ve given up all hope of ever having a pain-free life.

But what I am saying is that I need a break. The treatments are becoming almost as bad as the headaches. And when they don’t improve the headache, then it’s just extra pain for no reason. I cannot bear more physical or emotional pain right now. I just can’t.

I know several of you are mad at me, disappointed with me. And I get it. Yes, I would fight harder for others I love, no, I wouldn’t let them quit. Yes, that makes me a raving hypocrite, I’m aware of this.

But I’m tired. I can’t fight anymore. I don’t have the energy, I don’t have the sanity, I just can’t.

And I hope that you can understand that if I thought there was another option that didn’t take even more of me right now, I’d do it. But there isn’t.

Yes, I am very intentionally closing this door to this treatment. And now I’m just praying that somewhere, somehow, a window of relief will open soon.

I was more than thrilled when someone finally came into the waiting room with me, and even more so when I discovered that she was hilarious. A few minutes after she arrived nurse came over to get her paperwork and asked her to verify her date of birth. After she responded that it was 12/30/20, she looked the nurse straight in the eye and said, “would you like to know the date of my last period too?” The shock that registered on the nurse’s face was priceless.

Her jokes with the office staff gave me a few moments of much needed laughter, a few minutes where I wasn’t drowning in my own thoughts and worries.

When I was finally called back, the nurse asked me a few questions. She seemed sad for me, but I’m getting used to that. Uttering the phrase “8.5 month old headache” has that effect on people. It’s not that I don’t appreciate the sympathy, it’s that lately it’s gotten tougher and tougher for me to cope with the pain, both because I’m so tired and because things are getting worse instead of better. And frankly, sympathy makes it worse.

After the nurse left I waited a little while longer for the neurosurgeon to come in.

He asked a few questions about what happened after the last blood patch, and then it was my turn to ask him questions. I tried to be adult about it, but my question was the most childish one I’ve ever asked. Before I had time to stop myself, I blurted out my question. “Why me?”

I asked why I get massive spinal fluid leaks from lumbar punctures when they’re relatively rare, when other people really don’t. I asked why my body isn’t fixing itself like so many other peoples’ do with spinal fluid leaks. I asked why we can’t seem to find an answer to this when this is his specialty.

I didn’t expect him to have an answer, and he didn’t. He said I may just have poor quality in the covering of the spinal cord/canal, he said it may just be completely random. It might all be chance.

And so we got onto the next order of business- what the hell we can do now. He gave me 3 choices for now: a blood patch, a myelogram likely followed with a blood patch, or a 2 day infusion following by a myelogram followed by a blood patch.

I asked him what he thought, knowing that all I really had time and money for right now is the first choice, and thankfully he agreed. But he threw in a disclaimer. He said that if this blood patch doesn’t work, it may be time to consider that we have it all wrong. He had previously suggested that perhaps I just wasn’t producing enough fluid, but later rescinded that diagnosis, even after the negative myelogram.

And now we’re back there.

He said that there are just a number of things that are pointing to the possibility that this is all because my body isn’t producing CSF the way it’s supposed to, the way it used to. And do you know what the treatment is for that? Well, neither did he. Because basically it never happens, so there isn’t treatment protocol to follow. He told me he would do some research and suggested that I do the same, but I’ve come up with nothing so far.

I’m trying to keep my chin up and hope that this blood patch works and all this worry, all this stress and sadness is for nothing, but I’m having trouble. The signs all point to this not being a leak. The signs point to this being my body being what’s wrong. And more than that, they point to a solutionless problem. They point to pain that cannot be fixed, symptoms that cannot be cured.

I’ve been sitting on this for 5 days and I still can’t really wade my way through it. I went from being secretly hopeful that he really did have a solution like the nurse made it sound like, to being completely demolished by the idea that there isn’t a treatment at all. I went from my perfect dream scenario to one of my very worst nightmares, all within a few moments.

And so that’s what happened. That’s the whole story, unedited. But what’s left unwritten is all that’s going on in my head. The disappointment, the frustration, the pain, the sadness. The emotions I can’t give words to. They come in waves, ones that crash the hardest in the quiet moments, in the really painful times. But even when things are busy and I’m at my happiest, it’s all still there in the background, the tide quietly falling, waiting to rise again.

I’m tired of treading water, tired of swimming through this. I’m tired of being brave and strong, when all I really want to be is me again.

And then at 8:03 on Tuesday morning I got a call back. The nurse said the neurosurgeon wanted to see me this week. He wanted to discuss treatment options.

OptionS.

As usual, I’m fighting myself on this. This week has been such an incredibly terrible week in terms of headaches. I haven’t been able to accomplish 90% of what I wanted to, and the 10% I did accomplish was of a quality that never would’ve been acceptable to me in the past. And so there’s a part of me that wants to be hopeful. There’s a part of me that wants to think that perhaps this time we’ll figure out the answer, that this time we’ll stop the pain for good.

And then there’s the rest of me. The part that is bitter, tired, and in pain. It’s the part of me that has sobbed tears of frustration, of anger over this situation. It’s the part that swore I was done with hope. I know it sounds pessimistic. But the only way to preserve myself, the only way to not be crushed by reality is to not expect big things. To not hope for anything better because the let down is so great.

Tomorrow I have to face a future, maybe a big let down, I don’t know yet. I’m prepared to ask a lot of questions, to see what my options are, to get opinions from this doctor, who is an expert in this field.

But I’m afraid. I’m afraid that his opinion is that the only thing I can do is the multiple day in the hospital, extremely expensive test/treatment that may or may not work. I’m even more afraid that his opinion is that there’s nothing more to be done.

I’m just afraid.

I’m afraid of my life.

I’m afraid of my future.

I’m afraid of pain.

And I’m afraid that my life and my future are going to be completely full of it.

And then I uttered the magic words. Face tingling.

Wow. You’d have thought I said that I had a bomb strapped to my chest that I would detonate in a kitten farm if they didn’t deal with me in that moment. There was a conference with the neurosurgeon right then and there, wherein they decided that I didn’t just need to be seen, I needed a brain MRI first. I was told someone would call me back to schedule that day.

I finally called them today (the nurse was really confused because she swore someone called me) and I got an appointment for an MRI at noon on Tuesday and an appointment with the neurosurgeon at 1:30 the same day. We’re doing it wham-bam-thank-you-ma’am style this time. No waiting for results, just image and appointment.

I fully expect this MRI to come back clear, I’m not worried, except maybe about the cost. The MRIs always come back clear, and so before we scheduled I questioned the need to have another one. They assured me that it was time to do another one of my brain because it’s been a while, so I gave in and agreed. What’s another few thousand dollars between friends?

Here’s how it’s going to go- I’m going to have the MRI, I’m going to walk to the doctor’s office. He’s going to hem and haw a little and then say that everything looks normal. And then we’re going to sit there, awkwardly, in the silent void, while he thinks of things to suggest and I think of how frustrating this process is.

Aside from this MRI, I think we’re done with tests. We just sort of ran out of them.

We know I have low pressure, in fact, we know I have pressure that is getting lower and lower. It started at 8, which is moderately low and at last check it was 4, which is outside of the norm low. It’s not fixing itself and the headaches sure as hell aren’t improving. I now have dizziness as a constant companion and the ear ringing is at an all time annoyance peak.

So I have this low pressure, but we’ve done every test there is to do and I don’t have a spinal fluid leak, which is literally the only documented cause of intracranial hypotension. Go ahead, google it. I have. Over and over. There’s nothing else. I have a condition but I don’t have the only documented cause. Isn’t that special?

And now it’s time to treat it. I honestly have no earthly idea of what the treatments could include, because all the literature seems to indicate that I’m an anomaly (which is pretty much my favorite thing to be). But there must be something. There has to be some drug, some diet, some change I can make to increase my pressure and I’m ready to try just about anything.

When I told my husband that I knew he was right and that it was time to stop having tests done I sobbed and sobbed because it felt like defeat. It felt like I was giving up and letting my pain control everything. It felt like, if we quit looking I was accepting that this was my life, forever.

But I’m not.

Because I’m not walking away, I’m not accepting defeat or this fate. I’m just trying to find a way to control it. It doesn’t matter if it’s caused by a leak or my body being defective. It’s just time to fix it, however, with whatever, and at any cost.

And that will be my mantra on Tuesday.

It’s time to try something, anything, because I’m just not willing to lose another 7 months of my life to pain.

I truly don’t know if I can continue on like this and I’m scared to think about the alternative.

I called the neurosurgeon promptly at 9 and left a message with the nurse practitioner, explaining that I went to the ER and had the blood patch which didn’t really work. I gave her my cell phone to call, because I don’t know, I guess I thought I was going somewhere. Or because I’m stupid. Whatever.

At 10:55, my phone made a noise. A noise indicating that while it didn’t ring, I had a voicemail.

Of course it was from the nurse practitioner and of course when I called her back less than 2 minutes later she didn’t answer. I love my iPhone, but I hate AT&T coverage with a conviction that borders on sacrilegious. If Apple announces tomorrow that their iPhones will be useable on the Verizon network, I will go out, pay whatever enormous fee AT&T wants and run for my life.

Ahem. Anyways.

And so I waited. And waited. And cried. And called. And waited. And called. And waited.

At 3, I got a call from the nurse practitioner. The neurosurgeon wants to do another blood patch, a much higher volume one (for those who missed the blood patch explanation last time, it’s when they take blood from your own veins and inject it into the area just outside your spinal canal (the epidural space) and then it clots and closes the hole where the spinal fluid is leaking) to seal this leak for good.

But, this can’t happen until:

a) I got an get a FULL history and physical. Um. What the hell? It’s my own blood. Are you afraid I’m going to give MYSELF something? REALLY? I understand checking my clotting factors, but a full physical? So I have to ride for a solid hour in the car tomorrow morning to get to my student health center to get a physical. And let’s not forget that we’re doing this because I can’t even sit up for more than about 2 minutes at a time, but yea, let’s go ahead and do a fucking physical.

and

b) We wait a few days. Because the blood that was shot into my epidural space yesterday has to absorb some so that there’s room to shoot more in (more needles in my spine. HOORAY!). And if we don’t give it time, the blood might not go to the right place and then this big fucking circus will be for nothing. Which you know, only sounds EXACTLY like something that would happen to me.

So the nurse is going to see if she can schedule it for Friday.

FRIDAY.

In case you were keeping track, that’ll be six consecutive school days I’ll have to miss if they can even get it scheduled for Friday. If not, we might be waiting until Monday. If we’re waiting until Monday, I just might lose my mind. Oh wait, too late.

My twitter stream, much like my attitude, is a little toxic today, and I apologize for that. I’m doing the best that I can. But right now the best that I can is being bitter and in pain. I’m tired of always having the unexpected complications, I’m tired of the worst case scenario always being the only scenario.

I’m tired.

A very nice anesthesiologist (Dr. Balls, I swear to God), did the blood patch and I immediately felt better. He gave me a few minutes lying down to recover and then he sat the bed up. For the first minute, I was elated. The second minute, it stopped feeling so great. The third minute it fucking hurt.

I got them to lay the bed flat, thinking that I just needed more time. I napped flat for about an hour and then sat up. The pain wasn’t as instantaneous, but it was there. I thought maybe it was a little better.

We hung around the hospital a little while longer and eventually they decided that there just wasn’t anything more to be done. As I waited for my mom to bring the car, the pain came screaming back, every bit as terrible as it was in the morning, before I had the latest needle shoved into my intervertebral space.

The car ride home was 30 minutes of pure hell.

And I’ve been lying flat on my couch since then. When I sit up, it feels like the world is going to end. When I lie back down, it takes some time, but it does calm down, it is bearable.

Today I wasted HOURS, I wasted pain, I wasted my mom’s time, I had a needle shoved into my back and it was all for nothing. And now I’m going to have to miss another day of classes, go to another hospital (I’ll be speaking with my neurosurgeon tomorrow and he’ll be fixing this, damnit) and have the same fucking procedure done again tomorrow.

I am miserable.

I am disheartened.

I am upset.

I am in pain beyond my worst nightmares.

For the first time ever, I wish I just had my normal headache. I wish I could have even the normal, shitty version of my life back.

I wish.

Much to my dismay, it went perfectly. The lumbar puncture was pretty uncomfortable, but I didn’t have a reaction to the contrast, I didn’t have a seizure and we made it out relatively unscathed. All things worth celebrating for sure.

But wait, there’s more.

When they did the lumbar puncture, they measured my opening pressure. The only other time they measured it, it was borderline low at 8. But that time my “fabulous” neurologist didn’t actually write anything down, so we had no record of it. It was basically my word and the new neurosurgeon who’s unassociated with the old neurologist really had no idea what to think.

Friday it was 4.

FOUR.

8 is barely low, 8 is the lower cut off for normal range opening pressure (on the scale these doctors use). On Friday they did the puncture under fluoroscopy so there was no doubt about it being user error or crappy techniques. And I measured an opening pressure of 4.

I am not crazy.

Did you hear that? I AM NOT CRAZY.

Friends, that is called vindication.

However, vindication evidently comes at a steep cost. Because by around 8pm on Saturday, I noticed that my head didn’t feel normal. I was getting up a little more since my 24 hours of flat lying had passed, but it seemed like the pain was growing. I tried to shrug it off. Last time I got a spinal headache it was well beyond 48 hours after the puncture and I was barely at 30 hours post puncture then.

Yea, well, my body doesn’t really give a shit how many hours it’s been. I have a spinal headache.

And I know I bitched about how bad it was last time and I know I complain about how much my head usually hurts, but holy shit, this is by far the worst headache pain I’ve ever had. In fact, it exceeds the worst pain I ever thought imaginable. When I stand up, it feels like my whole head is in a vice. A vice dipped in scalding hot battery acid. Scalding hot battery acid that weighs 800 pounds and pushes my head down to the floor.

It’s bad. It’s really really truly really bad.

I didn’t sleep much last night because of it. I couldn’t lie on a pillow, but in my sleep I kept grabbing it. It took much longer for the pain to go away when I went back to flat, which made it hard to find any rest at all. I couldn’t even have my computer screen on because the light was too bright.

When I got up this morning to pee, I thought I might hurl, the pain was so awful. And so, when the clock struck 9, I called my neurosurgeon’s office. They patched me through to the neurosurgeon on-call and I told him what was going on. And his response, in the most dismissive tone I’ve ever heard was, “well, then you should probably go to an ER.”

No compassion. No concern. No help. Just go to the nearest ER and see if they had an interventional radiologist around on a Sunday morning who could squeeze me in for an epidural blood patch. No worries about how I can’t even sit in a freaking waiting room because the pain makes sitting up a freaking nightmare. No worries about making sure I’m okay. Just go to an ER and leave him alone, essentially.

I talked it over with my sister, my husband and my mom and we came to the conclusion that it would be best to give it one more day. There were a lot of factors, but mostly we figured the ER would be busy and there was a good chance that there wouldn’t be a qualified radiologist around to do it.

So my mom is on her way to Los Angeles now. Tomorrow I will call my neurosurgeon’s nurse and see if it would be possible to schedule a blood patch at their hospital so the waiting could be minimized. If not, we’ll go to the hospital a few miles away and wait it out and hopefully get this fixed. I am beyond frustrated to be missing so damn much school already. It’s not fair and it sucks. But more than that, I can’t tolerate this pain.

I’m pretty strong, I have a pretty high tolerance, but this is just horrific. This is pain that I hardly believed existed.

This is hell.

But despite the pain, despite the guilt over missing school and wasting more of my family’s time, I have evidence that something is wrong. I have proof that it’s not all in my imagination. I have a documented objective sign that we can’t give up yet.

I may be in hell, but I have hope again. And that will see me through.