The Beat Goes On

Most recent update on my body: my hormones, which went all kinds of wacky following the Effexor fiasco (as I call it) have since resolved into a menstrual miasma at an age a little to early to write off as ordinary early menopause. A recent uterine biopsy relieved any concerns about cancer, but revealed that I am (and I'm quoting my OBGYN) "raggedy in there." After much pressure and resistance, I gave in to the combined urgings of him and Dr. O to try birth control pills. Tonight, my long dormant tardive dyskinesia has found new life. Go figure. I look like Inspector Dreyfus in the Pink Panther Strikes again, my right eye twitching and my right hand twisting reflexively. My left foot is getting a little action too.

I keep encountering ongoing pressure from my kids teachers to put them on medications to help them "focus." When I explain that a psychotropic drug once almost killed me, they back off a little, but they always seem a little surprised that I'm not jumping on the Ritalin/Conerta/Adderall bandwagon that has "obviously helped so many children." I was tempted to turn in one teacher for trying to prescribe medication for my daughter, really not her job. My kids manage in school... in fact, my son has proven quite gifted this year, and all the the things he's struggled with have come together, not because he took a pill, but because he worked for it. I couldn't be prouder.

Found the Dr. Beggin website today. Worth a viewing. Wish he was more persuasive.

Still Going....... (and Notes on Seratonin Syndrome)

My Energizer brain, whether powered by hormones or just the ongoing weirdness that is, well, my brain, won't let me get sleepy again. I'll have to resort to my sedative of choice soon, Buffy the Vampire Slayer. It has no undesirable side effects, and I can "go off of it" whenever I want to.

I got into it when I was first sick, and there has always been something about it that helps quiet and focus my mind when other techniques fail me. There has been many a night in the past four years when I've only been able to fall asleep with it on. Maybe it's because the house and the "family" and the coping with extremely bizarre and often scary challenges in a humorous way all seem comfortingly familiar. I know what it is to live on a Hellmouth.

I first learned that I had Serotonin Syndrome when, after all my neurologist and psychiatrist shrugging sessions, I found the Mayo Clinic website actually has a Q&A forum. I wrote in, describing my various symptoms, and the circumstances under which they developed, and the doctor who was doing the forum said "Serotonin Syndrome" with an implied "duh" at the end. (I still have the emails). He naturally said I needed to consult with my doctors for an accurate diagnosis, but at that point I was inclined to take his word for it. I learned that Serotonin Syndrome can actually be fatal, and I had to acknowledge that at least I'd survived. The thing is that, even now, anything that stimulates Serotonin is still problematic for me, even sex. Sex has always made me stay awake a bit longer than my husband (the natural difference between the way women and men respond), but since 2003 I have to be really careful about when I "do it" or I'm up all night. Since I still prefer evening sex, it complicates the matter even further. If I'm actually stupid enough to eat chocolate and have sex on the same night, I can pretty much guarantee a heart roller coaster. At least then I know the cause, unlike all those nights when I have an episode for no apparent reason at all.

I'm still pondering the many drugs that people go through, trying to find the right one, and I feel it's worth noting that -- from where I stand -- the herbal stuff is just as problematic. Whether it's St. John's wort or Guarine, it all affects me just like the prescription ones do. With the exception of my very brief attempt to placate Dr. O's ongoing desire to cure me with drugs by taking one dose of Propranolol last month, I've been pretty much chemical free for three years... nothing stronger than Tylenol or Tums. Okay, and occasionally Ibuprofen. Really, on the whole, I think that's a good thing; it's given my system a little time to heal, regenerate, although I still feel like my nerves were just sort of stripped, I'm still so sensitized to so many things. I still can feel the weather changing when a storm front comes in. My husband thinks I'm just being poetic or something, but it is actually a physiological, experiential phenomenon for me... I can feel it coming. Maybe I should just hire myself out as a human barometer.

As for the lawsuit, I was looking up prospects again, and was struck by how many other people are doing the same. One blog comment to that effect had 955 hits, 538 hits on another, etc. Everybody's wondering, but nobody's doing. I can't help feeling a little frustrated by this, not just because none of us underdog formerly/currently depressed/anxious people seems to be able to summon the strength to really get the ball rolling. Either that or there aren't any lawyers out there who will take us "psychos" seriously, or are just afraid they'll have a hard time proving anything in court with such "unstable" clients. Or possibly, on the conspiracy theory end of the spectrum, the pharmaceutical companies have become really good at quashing any potential threats to their hegemony. There are obviously a lot of people who have been adversely affected by this drug, and I'm at a loss as to how it has just managed to fly under the radar. There was even a site that mentioned a teen suicide - you'd think that might garner some attention (not that I want to seem elated by that).

I don't know... just don't get why nobody's suing. Some firm in Oklahoma, I think it was, Caroline, Patel and Something, hung out a promising shingle back in 2005, but apparently nothing came of it. I emailed them and even called them, and the secretary sounded very bored with the whole thing. How far can a suit go with a bored secretary, er, administrative assistant? Where's my Erin Brokovich?

Well, Buffy beckons.

A Great Article

Check out this link:

http://www.nytimes.com/2007/05/06/magazine/06antidepressant-t.html?_r=2&ei=5087%0A&em=
&en=cdeb03773a3deee0&ex=1178596800&pagewanted=all&oref=slogin&oref=slogin

Flashback - Here's a Lower Place

(from a journal entry in March 2004)
I have to write about this because there just isn't anybody to tell anymore. People just get tired of you being miserable, and they just don't want to hear it anymore, but I still have problems, and nobody seems to be able to do anything about it, and sometimes I just don't know how to take it anymore.

Tonight I got up, my body tremoring, my mind racing, and I tried to do some yoga. While I was stretching, my mouth just started producing a lot of saliva, and I couldn't help drooling. When I tried to close my lips to hold in the spit, my mouth started twitching, and I just couldn't control it. Then, when I went to stand up, my bladder just sort of refused to hold it in too. Could I be less dignified?

(from a journal entry in June 2004)
I have this crazy eye twitch that comes and goes. I wish I could joke about it, but it just seems like one more straw on the camel's back. But that final one, really that came a couple of weeks back. Money has been so tight that there hasn't been much fun in the kids' lives, so I scrounged around the house and finally came up with 99 cents to go rent a kid video for them at Hastings. We got there, picked out the video, stood in line, and found out that my husband had got the last movie back late and we had a late fee. I had no money to pay for it. As we walked out of the store, the kids crying because they couldn't see the movie, me crying because I couldn't get a measly 99 cent movie for them, I thought, we must be the most pathetic sight in the world. I just sat with them on the bench in front of the store, all three of us tear-streaked and whimpering, and all I could think was that there was not a soul who would stop and help us out with a two dollar late fee. What a world we live in.

Finding the Rhythm

I'm still trying to get oriented after last month's illness marathon. Between the strep, the ear infections, the stomach bug and all, the kids and I missed a total of three weeks of school and work. We're all pretty much caught up now, but it seems to take me a little longer than it used to, once upon a time. Trying to get all the plates spinning at the same time again takes some doing, and one of the greatest tragedies of my "damage" is that I always question myself, question if it's just life or something permanently flawed in my brain. I think it must be easier for other people, because they seem to manage more, or seem somehow more heroic in their pathos. Me? I just manage to deal.

I've been surfing a little on the Web, looking at other people's experiences with Effexor. This blog was interesting:

http://www.medicalnewstoday.com/youropinions.php?opinionid=19018&p=2'

I'm perpetually struck by the ongoing pharmaceutical cornucopia that these people have endured, and continue to endure. I suppose I'm lucky in that I don't have much choice anymore about expermenting. I can't even overindulge in chocolate anymore without having pretty immediate consequences (tremors, heart palpitations, moodiness). It promotes clean living, I suppose. I've notices I feel a lot less neurologically fragile when I'm eating a lot of salads and fresh fruit, less fatty and starchy things. And the yoga really is the best thing I've found to quell the occasional intense nights. Would that I could better manage other stressors in my life, but one can only do so much about other people and commitments. It's always a balancing act, isn't it?

Right now I'm having some interesting hormonal craziness... that is to say my cycle is all over the place. The Effexor Event wreaked merry havoc with all my other autonomic functions for a while, but that part of my life had achieved some equilibrium for a change, until recently. Bad ultrasound: Doctor O's talking biopsy, and my husband is freaking out (after all, his Mom died not two years ago from cancer "from the waist down"). I'm feeling strangely detached, sort of clinically wondering what would happen if I had to have surgery and couldn't take pain meds. After all, my last close encounter with Morphine was not a happy memory. Hopefully, it's just something like endometriosis, or I'm just getting old.

Just a reflective note on the causality of my Effexor experience, still fantasizing from time to time about a law suit (sigh). I know that much of the current dysfunction of my brain is caused by the overdose of the Zoloft which I took the day after my withdrawal symptoms kicked in. I know (I'll explain how later) that this caused me to develop a rather pronounced case of "Serotonin Syndrome." But it is significant, and ultimately definitive in my mind, that I never would have overdosed on the Zoloft if I hadn't had such and extreme psychological reaction the the Effexor withdrawals, which -- among other things -- seriously impaired my ability to accurately assess how much medication I ought to be taking. I still think it ought to have a black label. "Warning: withdrawals from this are so severe that you might want to die or kill someone if you stop taking it. Don't." Which of course would be bully for the company because then anyone who started taking it could never stop... endless dinero.

Lab Rats Aplenty

At Dr. E’s request, I started getting some personal counseling and attending a class in Dialectic Behavioral Therapy - DBT - so that I could learn better coping strategies for dealing with the distress I was forced to live with for the time being. I found myself in a room with several women that I would have, not long before, thought were very different from me. These women struggled with bipolar disorder, various personality disorders, addictions, run-ins with the law, abusive relationships, you name it. These were people that some might have considered the dregs of society, cast-offs from polite circles. In the passage of time, I was to discover that we were not so very different, not me and them, and not anybody else.
I felt a renewed sense of anger at the pharmaceutical companies, and the medical profession, as I watched these women who went from drug to drug - and I mean the legally prescribed ones - hoping for something to make their pain go away. I listened to the ways that the drugs failed them, the days spent in bed because they felt too dopey to do anything, the anxious days, the hopeful days when they thought something could actually help them, and the terrible crashes when those hopes were dashed. I empathized with them as I wondered how anyone could be expected to keep up appearances with such a barrage of chemicals going through your system for years and years. I kept thinking how much we, as a society, had failed them, how much we had failed ourselves.
I felt it wasn’t just the drug companies, but also the societal expectation of quick fixes in our modern world. If something is broken, you fix it. If something hurts, you take a pill. If the pill doesn’t work, then we don’t want to have to deal with the mess. We want everything neat and tidy, and if it’s not, it gets shoved into the closet where nobody has to look at it. Or in the nearest mental institution, if that’s were the mess can best be hidden. I was grateful that had not been my lot, but also mindful of how easily it might have been.
I also became mindful of just how easy it is to compartmentalize people into set ideas of what sums up their personalities. Even amongst those few professionals and laypeople who really understood the difference between schizophrenia and multiple personality disorder, which was rare enough, there seemed to be a tendency to label a person - depressed, narcissistic, passive/aggressive. I became both fascinated and appalled at the readiness to stuff a person into her niche and leave her there. Nobody said anything to me about being anything other than depressed, having some anxiety, but because I was analyzing myself so much, I wondered if they didn’t think I had borderline personality disorder or co-dependent tendencies or Munchausen's syndrome. I thought, even if these were on the mark, which I didn’t think was really the case, there was so much more to me than that. I had gotten through so much hardship in life just out of sheer tenacity and a strong sense of my center. Where had that all gone, and why? I kept coming back to the impact of the Effexor.

... and a Happy New Year

Another racing heart episode on New Years Eve found me at the ER again, by myself. My husband refused to drive me. The nurses scolded me for driving myself. By sheer luck, they actually caught the phenomenon early enough to record it on EKG. Sure enough, my heart was going at a good clip in what appeared to be a state of atrial fibrillation. My heart rhythm was definitely out of whack. The ER doctor told me the problem was common in 50 or 60 year olds, but pretty rare in 36 year olds. Upon follow up, Dr. O referred me to a cardiologist. He hooked me up to a “King of Hearts” monitor for 24 hours, which returned nothing conclusive, except that my heart occasionally did a little hopscotch. Nothing life threatening, just extremely disconcerting. I wasn't dying, it just felt like it. This did, however, push Dr. O to prescribe Atenolol, a beta-blocker, for me in an attempt to kept my heart rhythm and blood pressure regulated. It was supposed to maybe help with my anxiety as well.
My first few days on Atenolol were unpleasant, as it made me dopey, and my experience with other dopiness agents over the last few months made me simultaneously really anxious about feeling dopey, which was really a strange combination of things to feel. After a tearful conversation with my Dad, who had been on Atenolol for his heart, I stuck it out. After a couple of weeks it seemed to be helping some. I bought a heart monitor/blood pressure cuff to keep an eye on my progress. There were times when I felt my heart was racing again, but the monitor would reassure me that all was well, even if I was skipping a beat here or there, or fluttering a bit. On another tearful day, I had to make the decision not to go back to school for the semester, and not to accept the re-offered teaching assistantship. It was a painful choice; I knew the assistantship would not likely be offered again, and I felt beaten. But I knew I just wasn’t strong enough. I was barely staying on top of the housework and childcare.