Wednesday, September 30, 2009

More Stuff That Happens in my Head

*** This head-related blog post is being interrupted for a few blog-related announcements. *** I have figured out why blogger wouldn't let me comment on my own blog and others and the problem has something to do with embedding the comment form. I've fixed mine, so, now I will stop ignoring you guys, but I still can't comment on other people's embedded comments through blogger. Any suggestions? *** Also, I have added a blogroll to the bottom of my sidebar! Seriously, scroll down a little and check it out. I read some amazing people. Most of them are pain-related, but not all, because it doesn't have to be all about the ouch all the time. Even though it usually is. If you want to be on or off my blogroll, just let me know!*** Now, back to your regularly scheduled head-related blog post. ***

My latest reflections on all the weird symptoms I've experienced:

I've had months-long bouts of nausea, sometimes from motion (Oh! No looking to the left today? Got it.) but usually unprovoked. I haven't vomited at all, I just generally feeling kind of sick. The sea bands I got are about 50/50. Ginger ale has been my best friend. I just hate drinking all that sugar. I'm working on alternatives. Dried ginger? Can I extract my own ginger juice? Do I want to?

The brain skips/twitches/zaps have been happening off and on. I'm googling it as much as I can, and so far, I got squat. It's similar to the feeling of "shooting rockets", or just drifting off to sleep and jerking awake suddenly, except it's only in my head (my body doesn't jerk at all (well, it does, but in unrelated situations, and we'll get to that later)) and I am fully awake and not sleep deprived or tired in any way. Similar reports come from people going through withdrawal from some drugs. I don't even drink caffeine right now. I take a soma about three times a month. I am smoking a fair amount of marijuana, so that could be it. But, when I used to smoke it recreationally, I never had any twitches in my brain. So, maybe not.

I've had a touch of night-time anxiety every now and then. Nothing too bad, but if I don't have my usual items in place (cup of water, phone, fan, etc.), I get a little nervous. I'm not sure where it's coming from, maybe just a little fear that I'll have trouble sleeping. Which is silly, because however unhappy not sleeping makes me, it's really not a frequent problem and I need not worry every night for something that only happens every few weeks or so.

Infrequently, and only with severe and sustained head pain, I have been totally unable to focus my eyes without covering one of them. I can see plainly with one eye, but with two, it's like they are hopelessly crossed.

I've developed a twitch. It seems to correspond with either a high pain level or a sustained, unchanging headache. So, if my pain has been at a steady 8/10 for a few hours, my right shoulder jumps. It's almost always my right shoulder, unless it is restrained in some way, then it jumps to any available body part. I'm pretty sure it's just a weird reaction to the pain, but I'm not sure. Anyone else get this?

I've been reading up on allodynia and central sensitization. I haven't been able to wear my hair in a ponytail since the headaches started. I often feel very physically sensitive otherwise: like a hard chair will be more than just mildly uncomfortable, or fitted clothes feel constricting and suffocating, or I can't stand the feel of movement against my skin, (so, no, you may not stroke my arm, you may only hold it completely still, and if you move I will shove you away involuntarily) because while it's not exactly painful, it does hurt. It's like chinese water torture. Is this allodynia? I'm still not sure.

I'm also unsure if my body's reactions to stimulus (noises being cacophonous, lights causing pain and nausea) are central sensitization, or a natural part of chronic migraines or both. For example, if I am exposed to an irritating noise, like gunfire on a WWII documentary (to pick a totally random example), I can pinpoint the moment it goes from an "irritating noise" to a "trigger". Something changes in my head and don't just hear it anymore as much as feel it, too. It can become a sort of brain overwhelm and if I can't block it out, I descend into pain and tears. It doesn't have to be noise, though, it could be lights, or smell, (Oh god, especially smell!) any stimulus, really. I can't escape it and I'm sure it's getting worse. Evolving migraine? Central sensitization? Part of me worries that it's psychosis. (Part of me worries that everything is psychosis and I'm in my own twisted version of the Matrix. (I have an active, and idle, imagination.))

The pain has been pretty constant. It is persistently gnawing on the back of my head and/or ripping at the sides, and/or throbbing behind my eyes and/or stabbing in my forehead. It often travels down my neck, stiffening my joints and tensing my muscles, making my shoulders rock hard and impervious to massage, and my back tighten up into knots, aching the length of my spine. I respond with ice on my head, heat on my back, muscle relaxers, marijuana and only in times of grave panic, narcotics. Zoning out on television helps, but nothing too sad or violent, because my emotions can go CRAZAZAZY when my head hurts, and any expression of emotion seems to be a trigger lately, so we keep it light.

My MIDAS score is depressing. I recently took it again, for a potential new neuro, and I didn't bother to add it. I know it's 21+, Grade IV, Severe Disability. I don't like to think about it.

My most frustrating trigger right now is exertion. Bending over, climbing stairs, walking at any speed above a dawdle, and even thinking about going outside for a walk result in a horizontal-making headache. I have better days than others, especially since I've been getting my greens in bulk, but my activity level is too low, even on my best days.

I'm starting to become more in tune with my head, my triggers, and my reactions. The experience hasn't been fun, but with the experience comes the knowledge, and my past pain contributes to my present ability to cope.

If only the learning curve wasn't so steep.


2 comments:

WinnyNinny PooPoo said...

Stephanie: Cluster Headache sufferers sometimes describe weird sensations like yours, some even say it feels like water running all of a sudden in their brain.

I have problems with nausea, and candied ginger sometimes works [you can buy in the spice section of the super market], but phenergan works better and helps with the headache pain. I have more than one problem that causes nausea so you might have that checked out - it might not be all your headache.

Sedation and sleep deprivation and severe pain all make me have the jimmy legs where I can't hold my legs still so I sympathize with the twitches! And the headache I have is very exercise intolerant. On a bad day walking across the room is too much!

Hang in there! Sounds like you are starting to sense your headache patterns! :)

MaxJerz said...

Have you ever tried Ginger Altoids? They're my favorite non-drug remedy for nausea. (I also use Zofran when Altoids aren't enough.)

-MJ