Sunday, January 13, 2008

(For those interested, I did stay home from work today and I'm currently doing everything in my power to stop this headache hangover from becoming a headache. I'll update later, for now, this entry is still exactly how I'm feeling about this crap.)

When I began this website, I had no intention of making it all about my health and honestly I've tried really hard not to do that. I have another site where I whine about what hurts and what's not good, and for the most part, that works for me. But right now I need to vent and I need to use stronger language than I do on that site. If venting and/or swearing are not your thing, just stop reading now.

My head hurt yesterday. A lot. Lots of pain and it hurt until I fell asleep for the night. I had a terrible night of sleep, and woke up feeling like I had a headache hangover, which is not too abnormal the day after a headache. Just one of the many pleasurable sides of this. Then, at around 4 this afternoon, got slammed with another headache. I tried for a good hour to pretend it wasn't there. To blame it on being hungry, or neck positioning. But I knew all along that I was kidding myself. This is a good old fashioned back of the head, classic Chiari headache.

And it's just not fucking fair. It's not. Because I went through this surgery, I did everything I was supposed to. I took time off work, I recovered slowly, I'm still not lifting anything heavy. I'm doing physical therapy. I just don't understand.

I knew all along that this surgery was not a guaranteed cure for these headaches. Hell, it was hardly a suggested cure. It was merely the last option. And it has made my quality of life immeasurably better. I'm not denying that or trying to make light of it. But my head hurts so damn much that it's clouded my ability to see the good.

And the pain isn't alone, no, it comes with a real healthy dose of arm numbness, jello-y legs and a big heaping pile of freaking the hell out. Because everytime the headache surges I ask myself 42,000 questions about why it's happening. Is my pressure high? Did something happen with the duraplasty? Is this just the beginning of the decline? Have I experienced all the days of feeling good that I get? And what the hell did I do to get here? How did this happen? Why did this happen?

And yes, I realize, this is a headache that I'm talking about, not cancer, not death, not some uncurable tragic condition, but the pain is unreal. It's like the whole back of my head and down my neck is in a vice. And with each heartbeat the pain and pressure surge, so much that I can see my heartbeat in my eyes. This is not a run of the mill headache. It's a reminder of the life I have led for several years. It's a flashback on what I thought I had moved past. And it feels like a warning about how freaking wrong this could all go.

So what do I do? Do I not go to work tomorrow? Chalk all this up to overdoing it? Do I call the doctor? Do I run to an urgent care center and beg for an MRI? Do I research Intercranial Hypertension until my already bulging eyeballs pop right out of my mother fucking head? No. I stay home and fret because none of the other things I've listed will help.

I know that staying home from work won't be the answer. I know that calling the doctor will, at best, get me an appointment Wednesday afternoon. I know that an urgent care will just be one giant bumblefuck of an experience. And quite frankly, my brain is not doing so well with the reading right now. So here I sit, wanting to scream out in frustration and knowing that even if someone hears me, there's nothing they can do.

I just don't know what to do or where to go. I don't know how to pick up the pieces of my shattered delusions of good health. I just don't. And I don't want to. I want to tape it all back together and be the way I was last week, hell, the way I was two days ago.

I don't think it's unreasonable to want to feel well, but clearly someone else does. If this is a part of a grand plan or if this is supposed to be some way of showing me how strong I really am, I'd really like someone to explain it to me, because it sure as hell doesn't feel that way.


Wonderful World of Weiners said...

Katie, Vent all you want - you have every right to - and I'm the perfect person to vent to right now - I am in quite the mood myself worrying about CJ.

Feel free to come by my blog and vent til your head feels better!


Anonymous said...

I get migraines, so I know about splitting, turn-the-fucking-lights-out, turn-the-a/c-to-60, and shut-the-fuck up headaches. But I doubt they compare to yours. And, unlike migraines these days, there's no easy pill for you to take.

I agree with Hallie--you have every right to vent, to be angry and to question why this has happened to you. I wish I could give you some advise, tell you of some great doc I know that can fix it or some new research I read about. But I can't. All I can do is say I am sorry that you are suffering. And I hope you feel better soon.

And, hell, take tomorrow off. Play Wii all day and get some strength up. Or sleep all day. Or watch bad tv.

Want me to bring you a king cake? I will.

Laurie said...


I completely understand your frustration. I am having an increase in my symptoms after having tethered cord surgery. I like you followed doctors orders and took it easy months following surgery but that did not help. Now I am back to having the same symptoms I had before I even began seeing doctor for these conditions in 2006 (now they are even worse).I did not have a decompression because I have EDS so I had TC surgery first in hopes that would improve my symptoms. Now I am facing a cranio-cervical fusion. I have 3 children. I just don't see how a fusion for me is possible. But I also know I need to get back to living. My symptoms have also gotten worse in the last week and even though one week ago was bad I'm wishing I could feel the way I felt then. It seems so unfair that we have to suffer so much.

Tonight I said to my husband I know it could be worse I could have cancer. He said to me is cancer really worse? This may upset some and I know it is awful to say and I don't know much about cancer patients, but in my experience with family members with cancer, which have been brain, skin, breast, and stomach cancer, they get better with treatment or like my Aunt Pat, (rest her soul) she went on to a better place and her suffering ended.

I feel like I also have a lot of venting to do. I don't know if it is the beginning of the New Year and hearing everyone making new plans to improve their lives are if it's my new symptoms. It could also be the fact that my three sons are now being affected. This is not fair at all! I know life is not fair, but come on God, give some of us a break here!

I know we need to find a way to be strong but at 1:37 A:M when I am in so much pain I cannot sleep it is, as I am sure you know tough to be strong.

Thank you for allowing me to vent also. Please know you are not alone and never give up. Maybe a trip to The Chiari Institute is needed, maybe you have other issues going on. I wish you the best of luck.


the queen said...

Oh, that is miserable. I really am sorry and feel somewhat responsible. (Stupid left-side sleeping.) Maybe you won't go back to the number of headaches you had before? Maybe the surgery was effective in reducing the number of headaches, at least, even if they are the same headaches and the same cause? I know that's no consolation in the middle of a headache, though.

kim-d said...

Awww, Katie, you vent all you want and swear all you want. This now being Monday, I can only hope you chose to stay home from work. And I'm just so sorry that there's nothing I can do to help you. Friends are supposed to help friends, and there is nothing I can do for you except be here for you. Which, I am and I will be, always. I don't care what health crisis a person has to deal it cancer, chiari, MS, depression...whatever YOUR health crisis is, is the one that's most important to you. AND THAT IS OKAY. That is the way it should be; do not ever feel like you need to minimize your situation. Never do that. I personally would rather have just about anything else other than a headache, so I cannot even imagine what you must feel like. I mean, yours are NOT ordinary headaches...

So, although there is not a thing I can do to help you, I still want you to know I would if I could.

Veronica said...

I've been suffering with severe headaches since I was 12 years old (I'm 34 now). The doctors can't agree on what type of headaches I get. I keep trying to tell them I get 3 different headaches but they know better (eye roll).

Imitrex seems to be working for me right now but I'm told it will stop working eventualy. My insurance is actually pressuring my doctor to stop prescribing it to me because it is so expensive. I had a headache so bad one day I truly wanted to die to end the pain. It was the scariest day of my life.

Lanny said...

Katie, I'm so sorry!