Dr. Appointment and Blog Updates

Wednesday, September 24, 2008

(First, a quick note about the blog template change. I kind of like it. It is a little hallucinogenic and I think it's kind of like the great equalizer. I mean, my head hurts all the time and now my blog makes your head hurt. Now we're all together in it. I kid. But really, it's the easiest 3 column template I could find, so I'm going to keep it for a little while. More on this another time, but I'll work on getting all my "page elements" back up throughout the day. Comments for the posts are now that the top of the post, which is new I realize. You'll get used to it, I promise. Nevermind, I changed it again. Even I had a hard time reading my own blog. Hopefully this is easier to read on all apparatuses. Apparati? Whatever. It should be more boring easier to read)

I'm back from the doctor.


It went pretty much as I expected it would. I was slightly concerned she'd be irritated that I'd gone to the emergency room and that'd they'd called her at 11:30 at night, but thankfully she wasn't. Apparently on the 7th day of a headache, doctor's have sympathy on you for waking them up at night. I also apparently looked like I wasn't feeling well. Imagine that.

She asked a bunch of questions about the headache: did anything I've taken make it better? (hell freaking no) Have I had any other symptoms? (dizziness, ringing in my ears, ability to see my heartbeat in my eyes, some nausea) Have I been able to do normal activities with the pain? (not very successfully) And a few others I don't really recall. She did a quick neuro exam, the only thing remarkable was that my left eye isn't dilating quite as quickly as my right, but the difference is VERY slight and when she repeated it she didn't notice the difference, so we're probably being a little hypersensitive.

What she said is what I was afraid of. Frankly, this happens. Some Chiari patients do well after surgery and then for no apparent reason have a return of headaches. They do not know why and they do not really have successful treatment. I cannot tell you what it feels like to have a doctor tell you that while she does think that an MRI is the right thing to do (Monday at 1pm), that she thinks it's going to show no change from the one in February and there's probably not going to be anything she can do.

It's not like I didn't know this was a possibility, because I did. I always knew it was. But I guess my thought was always, well, if I have the surgery and the headaches come back, they won't be worse than before. Well, guess what, they fucking are. This 7 day headache is worse than any I ever had pre-surgery. And I guess that's why I'm almost hoping that something, of a benign or treatable nature, shows up on that MRI. Because if I am simply doomed to a life of pain because of something I thought we'd fixed, then I truly do not know what to do with myself.

This isn't the kind of grin-and-bear it pain I used to live with. It's not shrug it off and move on pain. It's not sleep it off pain. It's pain that follows me every single waking hour. It's pain that is there when I wake up to pee in the middle of the night. It's pain that creeps into my dreams that invades my every thought.

Perhaps you think it's crazy to wish for something to show up on an MRI, but perhaps if you'd had a headache for 7 days with no relief, or if you constantly felt like your feet were going to flip over your head, you'd understand that it's not a wish to be ill, it's a wish that the illness that you have would present in a way that could be fixed. It's that there is a solution to what you know is an existing problem. It's that the wrongness could have a name so that it could have an answer. My neurologist agreed, there's no question that what's going on is not acceptable, there's just not really much that can be done.

So, against both of our wishes, she has given me Percocet to try and break the cycle of headaches, and as I said, an appointment for an MRI on Monday afternoon. If the Percocet doesn't work and the MRI comes back normal, then frankly, I don't know what I'm going to do at all. Because if 7 days of these headaches causes me this much trauma and this is what the rest of my life is going to be like, then I'm not exaggerating when I say that I really, truly, quit.


Cranky Amy said...

Oh, dear lord. I have to say, when you said you were going back for the MRI, I was hoping something would be on it also, so I don't think you are nuts for wanting that. At least that way there is something to try to fix. Hang in there, honey, we are praying for you.

Anonymous said...

Start smoking pot. I am only kinda kidding. Man...maybe a second opinion? I can't imagine going through this.

Anonymous said...

For sure a second opinion. And a third and a fourth. But maybe have the MRI results in hand first.

And no, the new template doesn't give me a headache. But it does make me see spots. Ouch.

Anna in IL

PS - Maybe a quick call to the allergist? And is there any chance this is all related to the new medicine she put you on? Or did it start before then? I can't remember, and I don't want to risk my eyesight to go back and look.

Daisy, Just Daisy said...


Anything we can do/send/bitch about for you?

Anonymous said...

forget those who diss the template (if there are any). i love it.

as for the 7 day headache and return of the pain in general - i am SO sorry. my other half has hellacious migraine cycles, so i kinda know where you're coming from and i certainly understand why you want something to show up on the MRI. i'll keep my fingers crossed that there's something benign causing the headache that they can fix and fix quickly.

Flea said...

I agree. I hope the MRI shows something. Chris said the same thing when he went for knee surgery - that they'd damn well better find something so they could fix it and make the pain stop.

Sounds like your doctor, from what you already know about your condition, is probably on track, huh? Freakin' eh. I hope the Percocet helps till Monday.

Anonymous said...

*sigh* what is there for us to say? I will only wish for something on that MRI if it's something fixable, m'kay?

I think the percocet is a good idea. I know how you feel about narcotics. I know how dangerous this can be.

Gosh, I'm just really speechless about all of this. Go to Bourbon Street, slam back a hurricane and yeah ... start smoking weed.

Overflowing Brain said...

Thanks all. Will seek a second opinion depending upon the MRI results.

The Topamax is likely not the cause of headaches. Ironically, the side effect of Topamax is that it causes headaches to disappear (it's primarily a seizure medication) which is why I'm taking it, and it has virtually zero documented cases of headaches as a side effect.

Thanks again. Here's to hoping that Percocet is what's been missing in my life.

Ness said...

I can truly appreciate your sentiments. My daughter said over and over in the last 5 months that, if at 21, these headaches were going to be with her for the rest of her life, she didn't want to live. I wish they would do a lumbar puncture and check your spinal fluid pressure. With all your brain and head have been through, it's not impossible that your intracranial/spinal fluid pressure is high. At any rate, you remain in my prayers for resolution.

Kathleen said...

Hi wandered over here from somewhere and I just want you to know that I am (a virtual stranger) that I am praying daily for you.

Maybe a Purple Haze might help?

the queen said...

Oh this suuuucks. I have another friend with headaches, triggered by eating. Maybe there's a trigger? And yes, I would try every imaginable pain reliever. legal or not.
That reminds me, another friend had cluster headaches - peyote saved her. Tiny little bits of peyote on a schedule.

Kristine said...

Oh sweetie, that really does suck. Chronic pain is so undertreated in this country. Don't be afraid of narcotics if you really need them.

I'm fairly new to your blog, so I'm not sure what you have tried in the past. If you haven't seen a pain specialist you might want to consider that in conjunction with your neurologist. Also, have you tried any alternative medicine such as acupuncture?

Just some unsolicited thoughts.

Lipstick Jungle said...

Its completely understandable that you would want to find something on the MRI to fight for. The fight you have had for the last 7 days seems fruitless and endless.

I am sorry the Percocet didnt work. I had great hopes for you. Percocet is what I take (injected) when I have a runaway migrane. It does cause the oddest and most annoying dreams/nightmares, but it has always worked.

I will pray that something turns around for you. Maybe another dose or two (when they are due) will knock down the wall.

GL Katie!