Tardive Dyskinesia II: What it Looks Like © Megan Snider

"This shaking keeps me steady. I should know.What falls away is always. And is near.I wake to sleep, and take my waking slow. I learn by going where I have to go."
--Roethke "The Waking" (click to read)

First off, let's start with what it looks like.

Here are some videos exposing the effects of dystonia and dykinesia. Dystonia and dykinesia are related movement disorders. Dykinesia is usually in the face and is caused by either prolonged ingestion of antipsychotics over the years or in response to a high does of antipsychotics in one ingestion, but it can also affect the body in a way similar to Dystonia. (It happened to me.)

If these videos disturb you, then I have done my job well.

Tardive Dystonia-- In Body and Face (click to watch.) PERMANENT. ***Disturbing***
Dystonia-- In Body and Face (click to watch.) PERMANENT. ***Disturbing***
Dystonia--In Body and Face (click to watch.) PERMANENT. ***Disturbing***
Tardive Dyskinesia-- In Hands, Face, and Mouth (click to watch.) PERMANENT. ***Disturbing***

The muscle rigor, extensions, movements, and convulsions you see here are INVOLUNTARY.

With Dyskinesia, when you see someone bearing their teeth, grinding their teeth or moving their mouth it is involuntary and it is painful.

When I had Tardive Dyskinesia, I remember my mother once asking me if I was smiling in the E.R.

No, I wasn't.

© Megan Snider

IT HURTS BEYOND EXPLANATION.

Tardive Dyskinesia I: An Overveiw © Megan Snider

"This shaking keeps me steady. I should know.What falls away is always. And is near.I wake to sleep, and take my waking slow. I learn by going where I have to go."
--Roethke "The Waking" (click to read)

I'm sorry to write this blog because I've mentioned this before at least three times and I don't want to bore anyone. But, I have to write this before I start working on anything else today.

Since the blog has a maximum number of characters I am allowed to type in one post, I will write this in installments.

I will cover symptoms, causes, video links, drug reactions, and treatment issues for the condition of Tardive dyskinesia (click to read.)

You do not have to read this blog. If you or someone you loves takes ANY antipsychotic, you had better read this because it is extremely important. This CAN happen to you. It happened to me.

This is not for sympathy. This is a warning. Tardive dyskinesia CAN be PERMANENT.

Watch the videos I post and see if you want to watch yourself or someone you love go through this.

Please, take your treatment into your own hands. Research, read, understand and learn.

I don't want this to happen to anyone.

The videos made me cry-- not for myself-- but because I know what Tardive dyskinesia feels like and the only way I could deal with having it permanently would only be by brain death or morphine or suicide.

That's not an embellishment.

I will give you the facts you need to stay safe and help yourself.

I will tell you as much as I know.

© Megan Snider

What Psychiatrists Need to Know: A Patient's Perspective © Megan Snider

"Writing is a form of therapy; sometimes I wonder how all those, who do not write, compose, or paint can manage to escape the madness, the melancholia, the panic fear, which is inherent in a human condition”
--Graham Greene

Initially this blog stemmed from an experience I had with my last session of "treatment".

I had a strong desire to document the absolute frustration I feel with the mental facilities--especially in Alabama.

I know if I were back home (Iowa), I would be receiving better care.

I know that Georgia also has much better school systems and mental health organizations and programs than compared to Alabama. When I began to post, I wanted to mention some things my therapist had said to me that I found rather upsetting.

Keeping in mind that this therapist and facility is the only place I have and can afford, I think I will keep remarks to myself. Instead, I am going to compose a small, easy-to-read list of rules that every therapist should somehow be made to submit to.

1.) Patients are not case studies-- They are people.

2.) Most patients can't afford the prescription plans you decree. Patients should not be treated with money and marketing in mind. Stop under-rating and over-rating drugs. If the generic version is just as good then offer it-- don't pick another medicine out of your hat when they can't pay for one.

3.) Warn your patient of side-effects of all drugs.

4.) Talk to your patient, not to yourself for the sake of hearing your own voice.

5.) Don't assume your patient is an idiot about his or her disorder. He or she LIVES with the disorder; you can only read about it. That must be nice.

6.) Stop neglecting patients by making them guineia pigs. Prescribe the proper counter-acting drugs with drugs that may cause side effects. I had tardive dyskinesia (click for link) for three hours on Saturday. It hurts like Hell. It spreads, too. In my case it was in this progression: lips, mouth, thumbs, hands (claw posture), eyes, tongue/mouth, jaw, back, and upper torso. Take note of the fixated grimacing and grinding of teeth section in this link provided. Now imagine that for three hours.

7.) Don't make promises-- especially huge promises or downright lies

8.) Realize that you don't know what your patient experiences and you never will.

9.) Mental illness does not equate to loss of I.Q.

10.) Stop buying into the drug hypes and pushing the new, mostly scantly-documented new drugs like they will be a cure. Prescribe just what works-- not what's popular.

11.) You may or may not be smarter than your patient. Deal with it.

12.) Give patients regular appointment times and see them often-- even the poor ones.

13.) Realize your patients came to you for help, not a life-time membership in the "new scary/great drug participation plan". Give them help and follow up on them.

14.) Let your patient talk-- not you-- AND LISTEN.

15.) Make sure you don't have trouble with overlapping diagnostic criteria.

16.) Mental illness is not a small problem; it is pain every day you live with it.

17.) Don't say to your patients, "I hope you get better." Try to actually make them better.


Sign here: _______________________ Date:________

© Megan Snider

Disorder and Outlook © Megan Snider

Between the idea
And the reality
Between the motion
And the act
Falls the Shadow
For Thine is the Kingdom

Between the conception
And the creation
Between the emotion
And the response
Falls the Shadow

Life is very long

Between the desire
And the spasm
Between the potency
And the existence
Between the essence
And the descent
Falls the Shadow

For Thine is the Kingdom
For Thine is
Life is
For Thine is the

This is the way the world ends
This is the way the world ends
This is the way the world ends
Not with a bang but a whimper.

--Eliot's "The Hollow Men"

NOTE: I simply can't get this poem to format right in the editing. I encourage you to read the poem by clicking on the link at the end of this passage. You can't conceptualize what Eliot is communicating correctly with this current format and I apologize.

I think sometimes we see and accept surfaces too easily. Let me ask you something; what do you think the above excerpt from Eliot's "The Hollow Men" is about?

I have known this poem all my life.
When I was little, my mother quoted Eliot to me.
When I learned to read poetry, I read Eliot.
Like all poets, sometimes you think you know what they're saying and sometime later you doubt that assertion.

I was sitting in a class and we were going over this poem and suddenly I realized I knew what this part was about.

I knew what it meant for me.
I don't know what it means for you.
I don't know what it meant for T.S. Eliot.
But, I know what it means for me.

If someone read this who had no knowledge of poetry, it would seem like gibberish.

To a mentally ill person it would probably be an echo of an earlier thought-- disorganized and disturbed--bothered by something.

I believe in this passage the speaker is trying to affirm something, but he can't.

Do you see the stuttering in the lines and the break in thought?

"For thine is the...For thine is the...For thine is the kingdom...Life is very long..."

This may be modern poetry, but it also reads a lot like classical disordered thinking in psychiatric care. I'm not making assertions against Eliot, but I know he did suffer at least one breakdown in his lifetime.
A line in "The Wasteland" confirms this.
Eliot writes so ingeniously:

"'On Margate Sands.
I can connect
Nothing with nothing.
The broken fingernails of dirty hands.
My people humble people who expect
Nothing.'"

We can't be sure who the speaker is because if you examine this section, you will see it is in quotes. I cannot tell you who said this, but I can tell you about "Margate Sands". David Seabrook, wrote a book about Eliot called All the Devils are Here. In his book, Mr Seabrook, asserts that Eliot, who was then working at a branch of Lloyd’s in London, went to Margate to recover from a nervous breakdown. (Click on the text for a link to the article.)

A breakdown is just a generic euphemism for mental illness.
(Score one point for my team.)
Eliot's wife was also mentally ill, by the way.

I want to assert three things about this poem:
Disordered thought effects religion
Disordered thought may fuel genius
Disordered thought effects outlook

The thing that really takes the hammer to my heart is the stuttering we looked at earlier. The repetitive "For thine is the..."

This speaker wants to pray...But he can't.

Mental illness skewers and dissects man's relationship with god and humanity.

How do you go about fixing things that are so broken?

...A religion that is swallowed and brought back up and swallowed again...

The church and those eyes of the congregation that can't seem to connect the idea that I no longer believe the god I believe in can really help me.

It reminds me of Eliot again:

"And I have known the eyes already, known them all—
The eyes that fix you in a formulated phrase,
And when I am formulated, sprawling on a pin
When I am pinned and wriggling on the wall,
Then how should I begin
To spit out all the butt-ends of my days and ways?
And how should I presume?"
--Eliot "The Love Song of J. Alfred Prufrock"


You may want to argue that I stretch that out of context and you would be right. I won't defend my use and misuse of poetry. But, it's the same thing as arguing over the lyrics of a song. Who is to tell me what that word or that sound or that phrase means to me?

I have been unable to pray for a long time now.

I want to, but I can't.

I'm to the point where I really don't think anything can help.

I'm at the "For thine is the...For thine is the.."


And I don't think I'm the only one saying this.



What is the last line of the poem?

Look at it:


"This is the way the world ends
This is the way the world ends
This is the way the world ends
Not with a bang but a whimper."
--Eliot "The Hollow Men"

The acceptance of mental illness and the consequent loss of aspirations does not come with a huge forceful explosion. It was rather a moment where the shoulders slope and the mouth slackens and the words break apart into useless syllables. It's like slowly losing your vision over the years and coming to finally realize you can't define shapes any longer.

The first thing I was told in response to my mental illness was, I quote:

"With the onset of mental illness, many people begin to realize that their dreams are no longer possible."


And I whimpered.

© Megan Snider

Read Eliot's "The Hollow Men" here: http://poetry.poetryx.com/poems/784/
Read Eliot's "The Love Song of J. Alfred Prufrock" here: http://www.bartleby.com/198/1.html

Sketches of Clinical Depression © Megan Snider

But thy strong
Hours indignant work'd their wills,
And beat me down and marr'd and wasted me,
And tho' they could not end me,
left me maim'd
(...)
And all I was in ashes.
(...)
Upon thy glimmering thresholds,
when the steam
Floats up from those dim fields about the homes
Of happy men that have the power to die,
And grassy barrows of the happier dead.
Release me, and restore me to the ground;
Thou seest all things, thou wilt see my grave:
Thou wilt renew thy beauty morn by morn;
I earth in earth forget these empty courts,
And thee returning on thy silver wheels.
--Tennyson, "Tithonus"

This poem, about an immortal, is immortal. One of Tennyson's absolute masterpieces. It also happens to be a glance behind the black curtain of Depression. It is not intended this way, I am sure. It is an epic recounting of an older tale.

For the sake of documentation, I will release yet another one of my man-created labels for mental illness. I have recurrent Major (Clinical) Depression with Psychotic features. Now, remember what Psychosis is-- it's not a psychopath-- it's a break from reality. This break is caused by panic attacks. But that will be a later entry.

Depression is hard to describe without being too cliche. On the surface it looks like a numbness, a loss of ability and function. This is partly true. Depression seeps so easily into the cracks in your psyche. Depression does have a voice, but it is flat and listless, tired of the eternal life that is too long just as Tithonus decrees.

I recently changed the personal message on my cell phone. It used to be in German because I love the German language. I switched it back to English. When I replayed it, I was shocked by my own voice-- no affect, no rising tone. It was beyond tired; it didn't even sound defeated; it didn't really sound like anything. It sounded like nothing. People with Depression are surrounded by nothing. In one of my poems I wrote the line, "Forever never finding(...)" I think that might be an apt comparison to Depression.

I wanted to put off the Depression blog because I knew it would be difficult to write.

Scientifically speaking, researches have discovered that during depressive episodes, the hippocampus actually shrinks in size from neuron damage. The claim is that with treatment, the normal size will return and everyone will live in a fairytale forever after and so on. Amen. Unfortunately, my Depression is drug-resistant. My brain has been fried by almost every anti-depressant made in the U.S.A.

So, where do you go from there? There exists these thoughts, these issues of wanting to be pulled to the grave or to be put down like a sick animal or to go to sleep and never wake up.

I actually hate the sound of birds chirping in the morning.

Depression is not a facade; it is not put on. If Depression were a mask I had been putting on for all these years, then I would have pulled it off decades ago.

Melancholy is appropriate for a writer, I suppose, to some degree.

Once you scrape past that surface of numbness, you expose the twisted nerves pulsating and on fire with memory, regret, guilt, and even anger.

Perhaps numbness is not quite potent enough of a word-- hopelessness would be much better.
The mentally ill believe the depressed thoughts they have-- all the black scenarios, the threats of harm, and the prospect of a future that stretches out before you as a vast, vast...wasteland.

You learn little tricks to shove your desires away, little techniques to suppress wishes and hopes that you believe can never come to fruition.

On of the most interesting line of a song lyric I heard was in the Goo Goo Doll's song "Name" where he sings, "Don't (sic) it make you sad to know that life is more than who you are?"

If good intentions and will were enough to tame the world wild world in my brain and fulfill my dreams, then I would certainly meet those obligations. Unfortunately, life is made up of strife, struggle, pettiness and put downs. After a while, you no longer want to participate in this stage of actors playing out their roles in life. So you hide in you bed, you stay at home, you neglect your personal appearance, and you basically rot.

Depression is not a matter of "having a stiff upper lip" or "marching on" or "pulling up the bootstraps" or (as the Germans would say), "Kopf Hoch".

There's no way you can fool yourself into being happy when your brain is turned inside out by chemical imbalances. Would you tell a man on his deathbed that hope would restore him to life again? Would you tell him that if he only tried harder, he would be able to survive for many more years? These kind of comments and thoughts trivialize Depression and mental illness. Tithonus, in the poem, begs that the gods take back their gift. Is life a gift? Can you wish it back? Depression certainly makes you want to do so.

Rumination is also a part of depression-- never letting go of those old scars, those old souveniers you always carry with you. Yet again, I must quote a Goo Goo Dolls song that says, "And even though the moment's passed me by, I still can't look away."

I think that is how a lot of depressed people feel. The constant things that hurt us keep on being regurgitated but never truly purged. In this respect, maybe the gift that Tithonus wanted to rid himself of was not immortality, but the memory of mortality.

© Megan Snider

Read Tennyson's epic Tithonus here:
http://charon.sfsu.edu/TENNYSON/TITHONUS.HTML

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:http://poetry.poetryx.com/poems/784/
(Mr. Kurtz-- he dead...LOLFTWBBQ)
Read Eliot's "The Wasteland" here: http://www.brainhospice.com/EndStageLandmarks.html

Vitamin H © Megan Snider

My nerves feel like twisted molten metal wreckages melted in furnaces engulfed in the hottest degree burning fire...All because of Haldol. Halopreidol, Vitamin H, Haldol is an antypsychotic used for the control of schizophrenia, bipolar and basically anything else your doctor sees fit. Haldol is usually prescribed with Artane, a medicine that blocks tics, tremors and muscle spasms, since Haldol produces all three just fine on its own. I assume you know where this is going. I get up, pop some Haldol, and get to work on a few articles to rake in a little cash.

Now, as things usually go, I don't make it a habit to divulge too much personal information. It just somehow doesn't sit right with me. I tell my friends-- well, when I can get a hold of them-- everything. But I don't blog everything.

By 5:00 P.M. today I was sitting in an E.R. having facial and body tremors. It started in my neck hours earlier and I thought it was just strain from looking up at a computer screen all day. It had been hiding in my mouth, at the corners, and now was making me sneer, and I knew at that moment something wasn't right because I couldn't stop doing it. It was a compulsion-- a painful compulsion that I had to carry through over and over.

Before long I lost the fine motor control over my tongue and starting calling out for my mom to come help me. Which sounded a lot like someone saying, "Mamb, mamb..." and I thought of the mentally handicapped with their various tremors and twitches and wondered if the Hell I was in now felt anything akin to their lives. My voice sounded like a little kid trying to spit out consonants; it wasn't funny, though. I felt scared-- literally scared stiff-- and totally helpless.

On the car ride to the E.R. my tongue was flopping out and I again remembered all the Christmases spent with my mother's mentally disabled and handicapped brothers. Maybe that was an inappropriate thought, but it was there nonetheless.

I'll save you the trouble of scanning the text for my treatment. The thousand dollar cure-- what was it? IT WAS A SHOT FULL OF BENADRYL.

© Megan Snider

I'll write more in the morning. Maybe I'll feel better.