Saturday, October 19, 2013

Time For An I Want To Live Moment!

But first, a quick update: Cymbalta and I may be friends after all. It appears that I was premature in my accusation of menstrual hijinks. All systems are still go. I'm still not on the med combo I should be on, but I haven't taken the step backward I thought I'd taken. So that's good.

I told you last week that a friend has recommended a psychopharmacologist, and that sounds like the best way to get the best information about the right drugs to be taking, given my particular combination of monkeys and monsters.

Also, in biofeedback this week, I dropped into deep relaxation for about 10 minutes and slowed my breathing to 6 breaths per minute, and raised the temperature of my fingers from 78 degrees to 89 degrees! Holy moly! Just like that! No conscious direction required, just relax, focus on the breath, and boom, open your eyes, look at the monitor, and you're 11 degrees warmer!

If I'd had a migraine at the time, that baby would have been TOAST!

So. I Want To Live. 

It's been a while since I've talked about much besides migraines and medication, so I thought I'd take a moment to talk about something else that's been going on in my life lately, and a pretty big thing I've learned from it. 

You've had something to do with this learning, after all, so I should let you in on it.

A week from today, I will be officiating at my youngest sister's wedding. I'm the oldest of four sisters. We share a pretty special relationship, the four of us. We are very close. They are all fantastic, smart, funny, kind, wonderful women, and I love them dearly.

Here, this is us at our cousin's wedding that I told you about recently:

That's Liz, the bride-to-be, on the left, then Miranda, Karin, and me. In birth order, 4, 2, 3 and 1, respectively.  Karin is actually the tallest of us all but she's crouching down because she was wearing magnificent heels and didn't want to dwarf me  (the shortest). Extroverts on the left, introverts on the right. Ha ha.

And here's another one of us from a few years ago, at my daughters' first Christmas, because then I get to show off my sisters and my daughters in one amazing photo:

I love this one of all of us. It's also one of the few pictures that makes me go, "Oh. Right. My daughters really ARE identical!"

Anyway, next week. Officiating the wedding. I get to spend the next week with these wonderful people and their wonderful families and my sister's wonderful friends, putting together this amazing event. It's going to be so much fun, and such a special time for all of us.

My sister and her fiance asked me to officiate last Christmas, and after thinking about what I'd say in my speech for a long time, and then having sort of a busy and then sort of a rough several months, I finally got started on it in August and really got focused on it in September after my cousin's gorgeous wedding, and I finished it up this week and really feel like I said what I wanted to say.

I went ahead and wrote the rest of the ceremony as well, so the whole thing, except for three or four borrowed-and-doctored sentences, will be my original work, and I'm very proud of it. I feel like I'm offering my sister and brother-in-law something from my heart for their big day, and that's such a lovely thing to be able to give them.

And here's my I Want To Live moment: I've realized, through the process of writing this wedding ceremony and finding myself not only comfortable with writing it, but surprisingly comfortable with the idea of delivering it in front of a crowd (not, in the past, my forte), that these past couple of years of writing and working through my PTSR have given me a level of confidence that I didn't know I'd gained.

I feel... like I know what I'm doing. 

I feel... like I have something to say, and like I know I can say it in a compelling way.

I feel... like an authority on my own perspective, and like my perspective is valid enough to present without disclaimer.

I feel... sort of like a boss.

In the past, before I started all of this work and before I started the blog, I knew, sort of, that I could write, but I didn't really feel like I had the right to it. I didn't feel like I could presume to speak for anything or anyone. 

Even myself. 

I thought that in order to claim any ground to stand on, you had to have credentials. You couldn't just call yourself an expert in something without the PhD to prove it! You had to have the research publications and documented evidence and vetted references and all the rest.

After writing this wedding ceremony and realizing that my lack of dread and  terror over performing it comes from the fact that I believe in it, and I am proud of it, therefore, I feel confident in claiming the authority to present it as my point of view, I understand that somehow, somewhere along the way, I've discovered something I remember thinking I'd never find. In fact, I wrote about it extensively last year, in this post, when I realized what I'd really lost in the accident: a sense of personal boundary and identity; the Fortress of the Self.

I understand now, with startling ease, that any ground I choose to stand on is mine. That I am an authority on my own thoughts and beliefs, and that I am able to present them in a compelling enough way that others want to listen.

I find myself standing here, suddenly, with the knowledge that I do, indeed, have something to say, and that you are out there, interested in hearing it. 

And here's the kicker: that doesn't scare me anymore!

It crept up on me without my notice, and now it feels as natural as breathing. That's part of the trick of it, I think, and also part of the power. It's instinctive now, not artifice, and finally, finally, occupying the place it should always have been in my mind and body. 

I've got a lot of work to do to make it real outside of myself, but inside of myself, maybe for the first time in my life, I think something that should always have been true is finally, actually, really-for-reals true.

I am a writer.

Me. A writer. On the inside. It's not what I do. It's who I am.

For the first time ever, I can say that out loud without feeling like a fraud. 

I've chosen my ground, and I'm standing on it, and by god, this here ground is MINE!

Ladies and gentlemen of the jury, behold: I WANT TO LIVE! 

Saturday, October 12, 2013


This week, I started the psychological portion of my migraine therapy at the Northern California Headache Clinic.

I am learning biofeedback.

I'm pretty excited about this. Biofeedback is something I've been interested in learning since I was a kid. My mother always wanted me to learn it, in part because she thought I was a hypochondriac and thought it would give me a way to work through my anxiety or whatever was causing my symptoms.

Turns out, she may have been partly right-- biofeedback has been shown to be particularly effective in treating migraines. As it happens, it's also effective in treating anxiety, depression, and PTSD, so I'm thinking this will be a really great skill for me.

So far, all I've done is get three fingers hooked up to a computer, and slow my breaths to match a chart of my breathing to a metered chart on the screen.

I will go back for 6-8 sessions to learn the whole technique, and then I should be able to use it at home to do things like raise the internal temperature of my fingers (which, if I raise it by 3 degrees, has been proven to ward off migraines-- for realz! One of the symptoms of migraine is that your fingers get cold because the blood rushes to your head, so if you can force the blood back to your fingers, you can stop the migraine before it starts. Who knew?!).

Dr. Oz has also recommended Neurofeedback, which is biofeedback for the brain, as a particularly effective tool for anxiety. I plan to begin a course for that as soon as I finish regular biofeedback. I'm going to learn both techniques-- I figure I'll arm myself with the most effective non-medicinal tools while I'm doing all these medical tweaks. The sooner I can become independent of these meds, the happier I'll be.

Speaking of the meds, Cymbalta and I are not friends.

It's messing with my period. That seems unbelievably inappropriate to me, and has me completely freaked out. I would like to maintain the illusion that I am not poisoning my entire system with this shit, thank you. So when unrelated functions start freaking out, so do I. Not cool, Cymbalta. Not cool.

However, it sure is making my back feel better.

Then again, I just feel... sick. All the time. This stuff makes me feel sick. It sucks. Except for the part where it makes my back feel batter than it has in years-- if not decades-- it sucks. 

So it's back to the drawing board, to tweak and sample and keep on trying to find the right fit. Ugh.


I need to find a new cocktail. Don't know what or how, but I need to. A friend of mine has recommended a psychopharmacologist, which seems like a really great idea, so I may try that instead of an MD or psychiatrist for my meds going forward.

I just want to get back to normal and be off meds for good.

Anyway, that's what's going on. Good implications for migraines, depression, anxiety, and PTSD with the bio- and neuro-feedback. I'll keep you posted. These two things together may spell the real end of the medical drama for me, eventually. 

In the meantime, I'm still med-shopping and suffering the consequences of an incorrect combo.

Working on it. Always working on it.

Wish me luck. I'll let you know how it goes.

Saturday, October 5, 2013

Frailty, Anxiety... Clarity

I think I've figured something out, and I think it's important. And I think it bodes well for me.

Very well. Perhaps immeasurably so, if I'm right.

But yes, I'm going to make you wait a minute for it. Because that's how I roll: MEAN!

First, a bit of an update.

Did I tell you I had an MRI a few weeks ago? I don't think I did. Well, I did. I've had a few over the years-- pretty standard procedure for we of the history-of-massive-head-injury-and-chronic-migraine set, as one might presume.

They always tell me that there is no significant increase in risk of stroke or cancer or tumors or anything like that with a massive head injury (although they know now that there is an increased risk of stroke in the months after a TBI, which I almost certainly had back then, before such things were diagnosed that way. Glad to have dodged that bullet.). Same with migraines. They give us these tests to rule out other causes for the symptoms that we are experiencing, not to find complications of the conditions we know we have. 

But it's always a little weird and scary anyway. One's inner hypochondriac tends to speak up rather forcefully when one's head is locked in a cage inside a giant, rattling, clacking, clanging, beeping, screeching tube. 

(And seriously: what's with those MRIs, anyway?! Have any of you had one recently? The noises! What purpose could they possibly serve? It's like a sound check for every single weapon and/or emergency alarm effect ever used in any sci-fi movie or TV show ever made. Over and over. Paired with rumbling and shaking and clicking and clacking and banging and clanging and dancing and prancing and all the other reindeer.)

Way primitive for such a high-tech procedure.



I did okay, though. It was funny, they kept asking me if I was claustrophobic-- my doctor, when he told me I needed to get the test; the nurse who called me to schedule it; the receptionist who checked me in. Everyone. And every time, I answered, "Yes, I am extremely claustrophobic."

Was I willing to do this test?


And that was it. End of subject. I kept hoping they'd offer me something soothing to ease my way-- they usually give you a valium or something, sheesh-- but nope, nothing, nada. Pssh.

Which was fine, as I couldn't have taken it anyway. I had to drive myself there and then home again immediately afterward to pick up my kids at a friend's house. But it's the principle of the thing.

So there was little claustrophobic ol' me, head locked up like Hannibal Lecter, rolled into the tube about as far as my waist. My hands were folded over my abdomen, and if I steepled my fingers, they touched the ceiling, so it was about 4" above my nose. 

Close quarters.

I was in there for about 20 minutes. Loud noises, as I said. And I did fine. No big deal. They check in with you frequently, in between 2-3 minute bursts of noise, and they keep lots of cool, fresh, moving air in the room so you don't feel stifled.

So anyway, I did the test, and had a couple of weeks before my next appointment with the doc, during which I might have let myself get a little nervous about the findings if it weren't for my finely-honed dissociative abilities, so instead I immediately forgot all about it.

PTSR, you are so good to me sometimes. ;>

I went and saw the doc on Tuesday, and he told me that he'd gotten the results (it took me a minute to remember what the hell he was talking about, so thoroughly had I deleted the information), and that there was nothing of concern in the findings: no tumors, nothing that needed another look. There was, however, a good deal of scarring on the brain and evidence of the injury. He could see where all of that had taken place.

I wonder what, if any, implications scarring on the brain will or could have. I'm going to ask him next time. I never think of good questions in the moment-- I need to process things for a while first. This is a really irritating quality in a person. When that person is me. 

I also wonder if I can get copies of those brain scans. I want to see them. I see the doc again in November, and I'll ask. If I can, I'll post them here. Cool, right? 

You can see my braaaaaaaains!

Another week on Cymbalta and Topomax, and I'm feeling a bit less muddled, but I suspect I haven't found the right med balance yet. I'm still out of sorts and not quite right. Since I haven't been on the full dosage for a month yet, the doctor and I agreed to wait until my next appointment before we change the levels, but I have a feeling I'll be increasing my dose.

I am experiencing two contradictory things: I think I'm sleeping better at night (I haven't been wearing my Fitbit lately to measure my sleep effectiveness. Gotta get that thing back on so I can see!), and I have still been ridiculously, overwhelmingly tired during the day.

I told the doctor this the other day, and he thought it was odd-- that neither drug should make me sleep better, and neither should make me tired, beyond the initial ramp-up-period sluggishness. 

I didn't really have a response to that. I know how I feel, and that's how I feel.

But then, yesterday, I thought of something that makes a lot of sense.

This is the thing I figured out:

We now know that the Wellbutrin was causing me constant, low- to mid-grade anxiety for about a year and a half, and that element has now been removed. 

What if it was that constant agitation that was keeping me from getting better sleep? What if it was the Wellbutrin that was causing my poor sleep, and also my agitation during the day that kept me from feeling the overwhelming exhaustion that I'm feeling now?

So now that it's gone, my body is really feeling that vast sleep deficit?

AND, my body is actually finally able to start making up for it?

I have taken NAPS lately, people! NAPS! ME! Like, THREE OF THEM!

I am not a napper. But lately, I just can't help myself, I can't keep my eyes open, and it has been helping. I've been going to bed a little bit earlier and actually falling asleep, and I've been staying asleep, and the Cymbalta has been helping my back pain which has made sleeping more comfortable, and I've been a teeny bit more refreshed in the morning.

What if removing the Wellbutrin solves the sleep problem?

And if it does, here's a better question, and one I can't wait to experience the answers to: