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mental health mondays :: talk about it tuesday

a few weeks ago, i was contacted by the american recall center, who are conducting a campaign to help start a conversation about medicines: personal experiences, side effects, any details that people should have before starting [or stopping]. more like space was invited to participate in talk about your medicines, with the focus for this blog clearly being on the drugs being used to treat mental disorders. i've expended a lot of pixels here talking about the different types of medications that are available to treat various conditions although, as i'm fond of stressing i'm not a professional and i don't know what i'm talking about in any scientific sense. that said, i do like to research such things and if i can make it easier to understand for anybody else, then i consider it a job well done.

one thing i've never done on the blog, however, is talk about myself. as much as i've written about the state of psychiatry, the prevalence of mental health issues, the treatments for disorders, i've never actually spoken about what's wrong with me. i'm guessing that most of you have figured out that i do speak about this from the point of view of experience, but i've never been specific. there are a few reasons for that; i wanted to make the focus more objective; i wanted the information i offered on medicine and disorders to be just that- information, rather than a diary of my own struggles; i didn't want to proselytize and assume that whatever worked for me was going to work for others [or that what didn't work for me wouldn't]. but by leaving myself entirely out of the equation, i've realised that i'm potentially hiding some personal biases. more importantly, if i'm not comfortable talking about my own particular flavour of crazy, i'm passively reinforcing the idea that it's something you're not supposed to talk about. or, in other words, undermining everything i've been trying to do.

so for any of you who have ever read this blog and thought "what's her problem?" i'm here to tell you not just what it is, but also what i've tried to do to fix it.

ARE YOU READY TO JUMP INTO MY BRAIN?



the first thing i should say is that your mental health is always going to be in a certain state of flux. even when you know what's wrong with you, it's important to pay attention to the signals your body might be sending that things are changing.

the second thing that i want to say is that doctors can be amazing and they can also be pretty obtuse, much like everyone else in the world and in pretty much the same ratio. it can take a long, frustrating time on the med-go-round to find the solution for your particular shade of grey matter and it can take just as long to pin a name on the disorder donkey.

although i've always [no joke, since childhood] been aware that something was off about me, i didn't receive what i consider to be a comprehensive diagnosis until about five years ago. during that time, i spent a lot of effort trying to cure myself, trying to ignore my problems and occasionally entrusting myself to medical expertise and the drug-of-the-month club.

after a lot of struggling, profiling, interviews, prescriptions and mistakes, i was diagnosed as bipolar type ii. well, at first i was diagnosed as type i, then as type ii, but the consensus seemed to be that i was pretty much balanced on the line between them. my unbalance is well-balanced.

complicating things, i also have a form of dissociative disorder, which is completely separate and can't be treated by drugs, although it can occasionally screw with how they function.

for the last couple of years, i've been taking a cocktail that seems to keep everything in check:

effexor

my experience :: it worked extremely rapidly and pretty effectively. all of a sudden, everything was normal, except that i wasn't freaking out over everything, i wasn't angry all the time and i went through periods of feeling calm for the first time... ever.

on the side :: i can't deny that i felt a little weird at first. my stomach was "squelchy": not sore, not nauseous, not bloated, but just off. there was also a tendency to sweat and fart unexpectedly, which i could have lived without and which i also experienced for a few days every time i had to increase my dosage. i started off taking it in the morning because i was scared it was going to make me sleepy and no one told me until years after i'd started taking it that effexor will mess up your sleep patterns worse than a lightning storm and a hit of lsd. although you can feel a little dizzy at first, it won't make you sleepy. most people i've talked to seem to find the opposite- it tends to make you a little agitated. oh, and i didn't cry for the first four years i was taking it, which is a symptom i've heard of from other people as well.

if i miss a dose, it triggers my vertigo automatically.

what i wish someone had told me :: that effexor can trigger manias in bipolar people, so it would be better to rule out bipolar before you start on effexor. my g.p. decided i was anxious and, even though i asked, wouldn't send me to a psychiatrist for a second opinion, so she just wrote me a prescription for effexor. a few months after i first started taking it, i started feeling really damned happy all the time, which i didn't share with my doctor because i didn't think it was a problem. after five or six months, i started to wonder if two hours sleep a night or less wasn't a tad unhealthy and why i seemed unable to shut up, ever, among other slightly alarming symptoms. effexor won't stop rapid cycling in bipolar people and it may make the situation weirder/ worse.

unfortunately, the rumours about effexor being nearly impossible to kick are, in my experience, absolutely true. even lowering the dosage was frightening. because of this, and no matter how much subsequent doctors have tried to change things, i'm sort of stuck. every drug regimen i've tried has needed to include effexor or lives are at risk.

lamictal

my experience :: gentle as a lamb. i can't deny it does something to level out my moods and that i generally feel a little better with than without it, but i don't sense a huge difference. i've recently had the distinct impression- based on missing occasional doses- that it's masking the fact the effexor is starting to lose its effectiveness. [that's something a lot of people don't tell you: psychiatric medications sometimes just fade like old batteries and then you have to change them.]

on the side :: i got a small rash on my neck the week i started taking it, which is one of the things that the drug is known for. it went away after a week and has never returned. i'm saying this because it has been associated with a much more serious rash [warning! medical photo at top of page!], so there's a tendency for people to freak out if they see one. sometimes a rash is just a rash. talk to your doctor about it, but don't panic.

the major thing that i've noticed about this drug is headaches. i get headaches when i take it. i get headaches if i miss a dose. i get headaches if i'm late taking it. and nothing seems to help them. they're not excruciating, but they're painful enough that i notice them. apparently, that's just something that happens. woe is me.

what i wish someone had told me :: that the drug is a diva. any variation- taking a dose late or early, or before a meal, or after a meal, or with a meal that's different than most of the meals you've eaten lately, or... well, virtually anything can cause it to get angry and give you headaches. 

perphenazine

my experience :: generally relaxing, but just a little bit unpredictable [more on that later]. it's been around since the fall of rome [not literally], so it's well-known and well understood. it's not a cure for a dissociative disorder, but it can make some of the issues associated with them a little easier to control. plus, of course, it's calming without being numbing.

on the side :: so... sleepy... well, some of the time. it's unpredictability means that i can awake in the morning [this one you do want to take at night] feeling refreshed, while other times i'm lucky if i wake up before sunset. all neuroleptics are sedating- it's one of their main functions- and as those go, it's not the worst by a long stretch. but the inconsistency does make it a bit of a bugger to stick with.

what i wish someone had told me :: that bipolar disorder can cause you to have "paradoxical reactions" to any drugs [meaning you have the exact opposite reaction to what's expected], including the ones that are being used to help you. that seems to be what's responsible for its inconsistency with me. i didn't experience this with other medications i'd taken for teh crazies, so it was kind of surprising the first time this drug kept me awake giggling all night.

ativan

my experience :: i might as well be eating blueberries. prescribed to me to deal with times when all the rest of the menu isn't able to contain the panic and anxiety, it's a total failure as a fail-safe.

on the side :: i guess the benefit of it having no effect is that it has no side effects either.

what i wish someone had told me :: that if a panic attack is strong enough to have breached the wall that is my normal regimen, throwing this bantam-weight at it will not help.

to arrive at this, there are at least a half dozen medications that were tried and didn't work, for many reasons. and there was a lot of confusion about what exactly was being treated. but i'm glad i kept at it. i like it that my brain doesn't just occasionally panic because i'm not panicking about anything. i'm glad that i feel some modicum of control over what i'm thinking and feeling. but i'm also aware that i need to be vigilant about what it takes to maintain that and honest about what is and isn't working.

i've also found that talking to others is a great way to find out whether my experiences are normal [always a tricky word] or not and to find out what others have experienced. it's been oddly reassuring to find out just how many people i know have been on the medical train at some point and i really do believe that talking more about this will help remove the stigma associated with seeking treatment for mental health. if by writing about it i can help, that's great. if i can learn, that's great too. 

that's my story thus far. would you like to talk about yours?

you might want to check out the following posts as well:

stopping your crazy meds
the problem of non-compliance
the dreaded weight gain
the mental health mondays guide to anti-manics
the mental health mondays guide to antidepressants
bonkers for benzos

Comments

Subway Dreaming said…
Thanks for sharing this, it is very interesting. I know it's very personal, so I appreciate you posting this for us to read.
Kate MacDonald said…
Thank you! I'm just hoping that people get something out of it, that it might help other people.

as long as you're here, why not read more?

dj kali & mr. dna @ casa del popolo post-punk night

last night was a blast! a big thank you to dj tyg for letting us guest star on her monthly night, because we had a great time. my set was a little more reminiscent of the sets that i used to do at katacombes [i.e., less prone to strange meanderings than what you normally hear at the caustic lounge]. i actually invited someone to the night with the promise "don't worry, it'll be normal". which also gives you an idea of what to expect at the caustic lounge. behold my marketing genius.

mr. dna started off putting the "punk" into the night [which i think technically means i was responsible for the post, which doesn't sound quite so exciting]. i'd say that he definitely had the edge in the bouncy energy department.

many thanks to those who stopped in throughout the night to share in the tunes, the booze and the remarkably tasty nachos and a special thank you to the ska boss who stuck it out until the end of the night and gave our weary bones a ride home…

making faces :: i'll get you, my pretty

a word to the wise: never dis "the wizard of oz" in my presence. it was the first film i ever saw in a theatre. [in rerelease, not when it originally came out. although i'd bet you'd all want to know my anti-aging secrets...] i grew up with a record of the film [basically key points of dialogue and all the musical numbers] that i listened to almost every day for years. the only thing that got me through elementary school was the idea that i might be sucked up into a tornado and launched into a technicolour dimension full of talking animals and fabulous shoes. i'll be honest- i never could figure out what dorothy found so damned appealing about going back to dust-bowl era kansas to live in poverty, when she could have just stayed on in oz with all her friends, safe from the witch who wanted to euthanise her dog. especially since the emerald city was in need of an overseer. but the movie has played a pivotal role in my life and do not take kindly to its detractors.

it continues... [part one]

so we're back at it with the democratic debates. last night saw cnn take their first crack at presenting ten candidates on one stage after msnbc led the charge last month. a lot of people were critical of the first debate because it seemed there were moments when moderators got such tunnel vision about keeping things moving that they stopped thinking about what was happening on stage. [the prime example being kamala harris having to insist that she be allowed to speak on the issue of racism, being the only person of colour on stage.] the other problem that many identified was that the time given to candidates wasn't even close to equal. i feel like cnn wasn't a lot better with the former, although they avoided any serious gaffes, and that they did an excellent job of fixing the latter. [that said, some of the outlying candidates might be wishing they hadn't had as much time as they did.] as with last time, i'll start off with a few general observations.

how importa…