Hour 184

Thursday, September 25, 2008

I'm just going to put this out here now. If you're tired of reading about my head, you're going to want to click the red box/circle in the corner because as long as my head continues to suck the life out of me, it's also going to continue to suck the life out of my blog. Sorry, it's just kind of the way it works. As long as my world continues to be void of humor, so will my writing.

As my three sentence blog from 6 this morning indicated (by the way, if I haven't already made it known, I'm not a morning person), I did take the Percocet last night. I did not want to, I was creeped out by it, especially since I was home alone (Slappy was on call) and I've had anaphylactic reactions to other narcotics, but I guess 7 days of a headache will wear down just about all defenses. I was a little surprised myself.

And then more so when I woke up this morning with the same. fucking. headache. I was drowsy, then couldn't sleep initially, then had some crazy dreams and then no relief. I mean, I don't feel an ounce better. Not even a little bit. Not more well rested. Not less crabby (shut up). Nothing. I feel like the back of my head is going to explode. I feel like my heart is beating in my ears and flashing in my eyes. It's awesome. Or wait, no, I forget, I think it's actually, yes, that's right, it's the freaking opposite of awesome. I remember now.

Last night took on a moment of especially creepy when the one pre-surgery neurological symptom that had been absent, nystagmus, came as if on cue as I settled down to chill at my computer. I had it fairly frequently pre-surgery, but it came in short bursts. A few minutes here, a few minutes there, and then it went away.

This would not stop. Five minutes passed, still, my eyes jerked from side to side. Then seven minutes. Eight. After twelve minutes of the side to side movements, I laid completely flat on my bed, closed my eyes, (prayed) and just waited. After a few minutes I got up and it stopped. It hasn't started up since, but I've had a few instances where I get the sensation as if it's about to begin and I'll just stop when I'm going and rest my head and it seems to stave it off, at least psychologically if nothing else.

I have come up with 2 completely plausible theories because I can think of nothing other than the pain in my head. Trust me, if you had pain like this, it would consume your entire life as well. I promise.

Theory #1: Intracranial Hypertension (Pseudotumor Cerebri): Basically like high blood pressure in your brain (and blood pressure being spinal fluid pressure). Is pretty common among Chiari patients. I have pretty much every single symptom. It creeped me out when I read one article that said, "Tinnitus - often synchronous with the pulse." Holy. crap.

Theory #2: CSF Leak Returns (with a vengence): In February the neurosurgeon found a csf leak on an MRI. It had sealed itself, but it had happened at some point. My theory is this: I flew to and fro California less than 2 weeks ago, to the tune of a lot of pressure changes and pretty vast sums of head pain. If I had a weak spot in my duraplasty, it could've sprung another leak, which could either be causing pressure headaches, or it could've already sealed and the pool of csf could've created a pseudomeningocele and that could be putting pressure on my brain.

In case you were wondering, yes, I do have too much free time on my hands. It's what happens when suddenly you can't concentrate on anything because holy shit, your head is going to explode.

And now we wait. And wait and wait. There's absolutely nothing, literally, that can be done until the MRI is read next week. I mean, if the pain increases dramatically I can go back to the emergency room and sit in the waiting room for another 6 hours or I can call my neurologist back, but mostly the only thing I can get myself at this point is a weekend stay at the hospital, which will do nothing but cost me a lot of money I don't have.

So here I sit. In bed, incapacitated, hoping beyond all hope that whatever the hell this is either is a) fixable, or b) fucking goes away. Either way, it's really time for this to stop.


Anonymous said...

Each day when I come in and turn on my Google reader I check to see if you’ve updated. Your Blog is the first one I want to read, to check on your health. Each time I hope that things have improved, that your post is not so filled with pain. I just wanted to let you know that there are people out here wishing the best for you and hoping that relief is headed to you soon. Take care.

Anonymous said...

I cannot even imagine how much these headaches must suck and how strong you must be to deal with them. And that is something I am so grateful for.

I hope the pain disappears for you soon.

lace1070 said...

Katie ~ Praying for relief from your headache ~ praying for the doctors to have wisdom for a solution ~ hugs ~ Lace

Flea said...

I hope you don't mind, but I talked to a group of friends about you last night. They're church friends. They're praying for you now as well. I figure the more people talking to God on your behalf, the better.

LauraMae said...

I haven't a clue what to say, but I hope every day that I will read that you've found relief. I mean seriously--WTF. Just awful. I am going to keep on praying for you girl.

The Floydster said...

My prayers are with you also. I'm so sorry you're suffering.

Ness said...

I told my daughter about you. She cried and said she never wanted another person to go through the 5 month headache like she did. She asked if I told you about pseudotumor cerebri and I said I did. I see you now list it as a possibility. Can I just tell you that since the shunt surgery, my daughter had a headache, much less intensity, for about 3 days and now it is totally gone? Please encourage them to do a spinal tap and measure your pressure. It could probably be done before or after the MRI as long as you're there anyway. I don't mean to repeat myself but I know what my daughter went through and I want you to have every chance to get rid of this headache and if the tap can rule in or rule out the pseudotumor cerebri then it's worth it. We made many, many ER trips for pain relief during the past 5 months and they even did one tap during an ER visit. You are in my prayers, dear Katie.

Anonymous said...

Katie, I am so sorry you are going through this. I have no idea how it must be to be in this much pain. You are in my thoughts and prayers. I have had the eye problem and it was caused by a virus. Don't know if that's possible with you, but maybe you have multiple unrelated things going on.(Either way, it sucks) Again, I am so sorry for your pain and pray it subsides.

Anonymous said...


All I can say is that every day that I read this blog I hope and pray that it says the headache is gone. I, like Ness can sympathize since I too have a daughter who has gone through the headache from hell for the last too many years of her life. Unfortunately pain meds become a persons good friend when you have tried everything else that is out there and NOTHING takes the pain away. Don't give up hope yet. Although it does seem like it, ther are still options out there for your docotrs to work with. I hope they are willing to use them quickly!! Until then, know that there are pople who are concerned about you and are wishing nothing but your pain to go away. Hugs and pain relief being sent to you.

Kathy - mom to Kerri (also a Chiari Patient)

Anonymous said...

Ugh - CSF Leak. Now that brings back nightmares about the brain tumor ordeal with my mom. However, given a choice between that & the Intracranial Hypertension I'd guess the leak might be easier to address & fix.

Whatever it is, they had best fix it soon or they're gonna have to answer to us. Maybe you should tell them you have a team of bloggers behind you who are ready to jump all over them if they don't take care of you.