A funny thing happened on Friday. Okay, it wasn’t funny, not even a little bit.

I went to a movie with my husband, a movie I thoroughly enjoyed. When the movie ended, I grabbed my phone to see who had called me in the middle of it and the screen just seemed painfully bright. And though I had had a headache all day, it suddenly became more apparent. More really seriously noticeably unpleasant.

Over the next 20 minutes the headache went from ho-hum to holy crap. And by holy crap, I mean literally, the worst headache of my life.

I tried laying flat, hoping that maybe this was a sign that I had an active CSF leak (yes, I realize how crazy that sounds, but laying flat relieves those and I really, really wanted relief). I tried migraine medication because I thought maybe it was a weird migraine. Neither of those did anything. No change, just horrendous pain.

The pain was where it usually is, it was just so much worse.

It was so much worse that I warned my husband that we might be spending the night in the ER because I was scared of what might be going on. I don’t do ERs for headaches, and I don’t take narcotics for them either because they don’t help, but at that point I’d have taken anything that was handed to me.

Thankfully, it didn’t come to that. Eventually I went to sleep and woke up in the morning feeling worlds better. I spent most of Saturday and Sunday laying low, I was scared it would come back. Like a mini-bout of PTSD. It was unpleasant, but compared to the pain on Friday, it was awesome.

I’m trying hard to focus on school, to make it through this week so that I can move on to vacation and relaxing. But these headaches are genuinely starting to worry me. Not because I think anything is horribly wrong, because I don’t. I don’t think that there’s a dark scary underlying cause. But I’m scared because, as my PT put it, this isn’t sustainable. If the headaches keep getting bigger and worse instead of better, I am not going to be able to do the things I need to do.

It’s starting to dramatically impact my quality of life.

I don’t know the next steps. I’m still waiting to get insurance approval for the scan that was ordered, I haven’t started the vitamin A because I want to be done with finals first. And many people have asked if I’ve called my neurologist, but for what? To say, hey, it hurts worse now! Though I’m sure she’d love to spend time chatting, I just don’t see how that would help anything. I just, I don’t know what to do. And I feel increasingly helpless.

I feel passive in my own life. And it sucks.

I know that in the grand scheme of life there are far worse things. But I feel like the grand scheme of my life is changing in a way I do not want it to, and that feels like a pretty bad thing.

8 Responses to “Sustainable”

  • Samantha Jo Campen:

    Oh honey. I’m so sorry. I’ve had headaches/migraines/sinus trouble since second grade. I know. I know how much they suck and can leave you incapacitated.

    I seriously think of you whenever I have a headache and truly wish you relief.



  • purplebreath:

    It seems like you’ve done everything within your power. Keep resting. Love you.


  • Lynda M O:

    I am sorry that you have this huge head pain. I hold you up to the Universal Healing Power.


  • Sue G:

    You and I are so much alike. The more helpless we feel, the more vulnerable, the more we try to control the things we can control (like when to start the vitamin A for you and like the perfect time to have the hip surgery I needed for me). The problem with that is that we start eliminating the available solutions–or at least postpone them. For me, the decisions I made this past year put me in the hospital with a shattered acetabulum and emergency surgery.

    Please, please, please pay attention to what your body is trying to tell you. I love you. I don’t know why but I do. And I don’t mean to be pushy or bossy. I just want the very best outcome with the very least amount of intervention possible for you.

    And now that I lectured you I guess I will have to come clean with the doctor today and tell him there has been a change in my eyesight. Geez, thanks a whole lot, Katie. I really didn’t want to open up that can of worms for myself!!!! Bad girl.


    Katie Reply:

    @Sue G, First of all, TSK TSK TSK. A vision change is not to be kept a secret! But if it makes you feel better I got a STERN lecture from my PT about not going to the ER with the worst headache of my life.

    Control is very hard to come by these days. I am not a fan. I hope you’re doing alright. Please take care of yourself.


  • JeannieD:

    Probably because you have adapted so much to chronic pain, you do not realize how much you are minimizing a huge event. You know that any big change in any condition is worth seeing a doctor over. Something that involves your brain should be looked at immediately. Anyway, I’m glad you got a lecture. I’m not trying to add to it only to echo it. Please tell Slappy that those of us who care about you (yes, even people you have never met) need him to take more control in situations like these. You are so wanting to keep everything status quo, and not miss anything or fail anything that you may put yourself at risk. Please take good care. Remember, safety first.


  • Danielle:

    I love the way you have put this into words. I have been there recently, and I have looked for a way to describle it to people, andyou did it flawlessly. <3 Namaste, new friend.


  • Viridianne:

    Hey Katie, just wondering if there are any updates regarding this post and your possible low pressure? Did the vitamin A work to lower your pressure and/or make things more visible on mri? As someone with chiari, I must say when your said your neuro said maybe you never had chiari, I felt like I was sitting beside you in the office…sounds like something that could happen to me…you never know going in if your visit is going to be no big deal or, hello, tee total game changer that you now have to (no pun intended) wrap your brain around. Since I haven’t opted for surgery yet, I just can’t imagine what that must have felt like to hear her say that! I would just hear ‘so you may have had surgery for no reason’ and I think my head would’ve just popped off and rolled in the floor! Again Katie, you’re my new hero! This is another example! Would love to to hear from you! : )


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I'm Katie, a 30-year-old, wife, mom, former teacher-turned PT, who also had brain surgery in November of 2007. This blog chronicles my daily life, from mundane to crazy, often with far too much detail. Sit down, get comfortable and stay for a while.
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