Monday, May 25, 2009

General Discussion and the Haldol Dilemma © Megan Snider

Between the desire
And the spasm
Between the potency
and the existence
Between the essence
And the descent
Falls the Shadow
--Eliot, "The Hollow Men"

I Tiresias, though blind, throbbing between two lives
-- Eliot, "The Wasteland"

I feel like I should issue some sort of retraction for my blog the other day. It is not uncharacteristic of me to share my feelings, it is just uncharacteristic of me to put them on display. Certainly having muscle spasms and tremors wasn't my proudest moment. I still remember lying on the E.R. with my back arched and my hands fixed into little claws, my neck bent back, and my eyes glued in an upward direction; I would not claim that as my most wonderful moment. Then the doctor walks in-- a male-- and says, "Well, Megan?"

I was evaluated by two male doctors, face and body twitching and spasming, with my hair pulled back into a messy ponytail. I'm not sure which hurt worse, imagining what I must have looked like or remembering how those sensations felt.

Muscle pain is quite unique. What I had was muscle rigor, contracting, and stiff muscles. And the pain was quite indescribable. When your muscles clench, it isn't like how they bunch together when your reach for something or move; it was full exertion and rigor of the muscle for countless seconds punctuated by small pauses. My teeth were literally grinding against each other and making noise. I'm still in pain today, but it's alright.

I wanted to share with you that my reaction actually began over the course of hours. When the symptoms became unbearable, I went to my room to hide and wait for it to be over. Things like that don't blow over by themselves, though. I am sure I could have driven myself to the hospital somehow, but I was lucky to have my family take me.

I am writing this as a warning. You see, I had been on Haldol prior to this incident. I was on Haldol previously without Artane for a few days. I always have facial twitches with Haldol, but I couldn't feel them, so I felt it was not too much of a bother. Nothing happened then. But something happened this time. My point is not to write for sympathy. Sympathy is wasteful sometimes and a plea for sympathy is rather pathetic. I am writing because I want someone, maybe just one person, to learn from what's going on in the world of psychiatric "care".

I hesitate to call it "care" because it would be deemed cruelty to administer a drug that causes convulsions and muscle rigidity upon a lab animal, but I suppose it is okay to do this to the mentally ill. We hesitate to carry out cosmetic testing on bunny rabbits, but we'll let kids lick anti-psychotics out of our hands.

Believe me, I'm not anti-drug. I am anti-horrible-side-effect. It's difficult because, as a person with diagnosed illnesses, all I want is to get better. That's all anyone wants. But it seems like no one is sure what to do yet. We know so frighteningly little about the brain. We give things names that we can't even explain.

What I want out of this tiny little room of words is just education and a place where people can communicate without being judged.

My second bout of Haldol was fine. I was actually going to write a blog about how much it seemed to be helping the day I went into convulsions. And, to some degree, Haldol is a good drug. But no one should have to go through that sort of physical pain because some doctors are ill-equipped to treat their patients or too quick to diagnose.

Here's what you should do: the minute you feel ticking to start or little spasms and they have a spark of a tingle to them or hurt a little, start on your way to the hospital. As minutes go by, it gets worse. The doctors will probably shoot you up with Benadryl and then give you a prescription for 25 to 50 milligrams of Benadryl and 5 millagrams of Artane (trihexyphenidyl) to take 3 times a day as needed. I'm asking you that if you take Haldol, keep BOTH Benadryl (regular over-the-counter) AND Artane in your medicine cabinet.

Tardive dyskinesia is defined as repetitive involuntary movement or spasms in response to high dosages of anti-psychotics. Artance states in its drug fact sheet that it only treats tremors and not Tardive dyskinesia. I am unsure where we draw the line between Tardive dyskinesia and muscle rigidity or spasming. I'm not a doctor, but by the time I die I might be.

Does anyone remember the push for Abilify as the new miracle antipsychotic? The new third generation push behind it entailed ad campaigns and colorful Internet banners. You can get Tardive dyskinesia from Abilify. So, I'm wondering where all this "new and safe" hype is coming from.

Oh, I must point out two things before I forget-- the reference from "The Hollow Men" is not about Tardive dyskinesia. (Ha ha.) Also, the quote from "The Wasteland" referring to Tiresias, throbbing between two lives, is an allusion to the fact that he is both male and female. At least, that's how I was taught the poem. The interesting metaphor there is that a lot of people live two lives. If you're mentally ill, you basically have to.

I remember sitting in an office at college with one of the doctors. This doctor had been a good friend of mine and I mentioned that the therapist had mentioned Schizophrenia in my diagnosis and I remember the college professor simply gasping, "Oh, my God!/ Jeez!" or something to that effect. And I remember being disappointed by that reaction. I suppose it was warranted, but the remark burns the existence of stigma in response to mental illness right into the middle of your forehead.

Now, I'm not sure if that is an official diagnosis. No one wants it to be. But, then again, no one wants to have cancer, either. But cancer is treated with kindness. If someone acts silly no one yells, "Hey! What's wrong with you? Do you have cancer?" at him. They yell, "Hey! What's wrong with you? Are you crazy?"

It's unlikely for me to approach writing in a casual way. I think writing is art and should be applied quite carefully. That is why I want to reject my last two blogs. But, on the other hand, they preserve raw emotion and that is just every bit as important as finding the right words.

Modern writing has changed so much with men like Eliot and Cummings that it really is hard to classify anymore. Maybe communication has gone that way, too. Maybe all of our voices are just tiny imitations of what we read and like and think about. And what of Mr. Beckett's contribution to the arts? That's a tough absurdist cookie, right there. A lot of mental illness has to do with trying to communicate what is unspeakable. In a way, the great writers communicated what hurt, sometimes why it hurt, and how to fix it without even making much literal sense at all.

© Megan Snider

Talk about a co-morbidity: That's genius and that's illness.
Read Eliot's "The Hollow Men" here:
(Mr. Kurtz-- he dead...LOLFTWBBQ)
Read Eliot's "The Wasteland" here:


  1. Wonderful entry, Megan. So much information. While reading along, I was a making a mental note to tell you what I know about Abilify, and then you covered it yourself.

    There's a humility to your writing that's refreshing, but you should be unapologetic. Isn't writing (blogs, commentary, essay) about documenting the world as you see it and feel it? There is nothing about your entries that suggest a need for sympathy; it reads like an information piece, and you provide the reader with valuable insights. Thank you for that.

    I'm the parent of a teenage son with Borderline Personality Disorder (along with kidney failure), who takes Abilify and Paxil... but sleeps all the time, has coping issues, and precarious quality of life. Like a lot of parents, I'm on the eternal search for answers, better treatment, fewer side effects, hope, understanding, etc., etc. As such, I cannot overstate the value of reading your experiences, Megan. Anyone reading you can see that your intent is to document and inform -- we're all hungry to hear of real-life experiences.

    I encourage you to keep writing. Your intent is clear and your perceptions are insightful. Most appreciated.

  2. Thank you so much for your nice words. I know that my parents also struggle with me. I know that sometimes they cannot understand me and I cannot understand them.

    I've gone into several depressions where I literally did not leave my bed for days.

    The problem with the medicine is that it's a trade-- you always trade something to feel a little better for a little while.

    You take a pill to cure panic attacks that makes you drowsy and then you STILL end up having panic attacks and, on top of that, you're ehxausted from the pills and can't fight the scary sensations that accompany the attack.

    I remember that there was a big push for Paxil too a while ago. I wanted to try it, but my regular doctor advised against it. It was suppossed to be some super drug for anxiety and other related things. It's interesting how mental illness overlaps so much.

    The mental health world is so tragic because it's so hard to get help-- and all of us-- parents, friends, and sufferers-- want help.

    I remember my last appointment with the therapist. I probably should not mention this, but I'm going to because it shocked me.

    First, I went into his office, he flipped through my file, asked me if I had Medicade or insurance (no, I don't) and then scribbled down some generic presriptions.

    I was there for less than 15 minutes, The last thing he said to me is, "I hope you get better."

    I went to the front desk and they told me the doctor wanted to see me in six months. Imagine that!

    The whole thing was like a slap in the face.

    (SIX MONTHS!!)

    It took me three days to have full body and facial ticks, tremors, and convulsions.

    Doesn't the therapist realize that within six months, I could drastically change? Look what happened over three days!

    The medicine we need is dangerous and never fully cures the anomalies in the brain. I don't think the brain ever fully heals. I think you learn to function better slowly, but that weight is always on you; that fear is always dogging your feet.

    It will be interesting for me to talk to you because I can hear the other side of the story-- the caregiver role instead of the patient role.

    I think my current internet job is a blessing because I had to quit my job because of my panic attacks.

    Sometimes I feel like mental health professionals are just observing the mentally ill like animals in cages and poking them with sticks through the bars. It helps, but it's not enough.

    And, of course, there's always that need to hide what's wrong with you. When people hear the word "psychosis" they think "psychotic". When people hear "Schizophrenia" they think "Paranoid, Unstable".

    I don't want to be pessimistic, but on the other hand, I can't say any pill is a cure-all. I wish there was one for every mental illness and diagnosis because the world quickly becomes a scary place when mental illness finally explodes and engulfs your brain.

    Keep hoping. Just be careful about everything that is being prescribed and diagnosed. Doctors are certainly not gods and a lot of time they are very removed from the situation you're going through and don't react or prescribe things correctly.

    Thanks for sharing your information with me. It takes a lot of guts, but it also shows understanding and acceptance of the illness rather than denial and suppression. There's one move in the right direction.

    I wish for just one day that everyone in the world would contract a mental illness-- just for one day-- to see what we're dealing with here. I also think people should have to care for a mentally ill person just for one day as well to see what that is like.

    Until that magically happens, I guess I'll just keep adding entries to my blog.

    I'm sorry the entry is so long. I always got in trouble in high-school for writing too much.
    Can you imagine that? (Ha ha.)

    I wish you and your son find the right doctor nd the right treatment. Something has to be out there somewhere. The problem is finding it.