Thursday, August 14, 2014

The Irony of it All: Tardive Dyskinesia

Laura came by our home tonight to visit after taking her final exam.  She looked a bit frazzled and shell shocked, so I assumed it was likely just after test stress relief. We started talking about her medications and setting up an appointment to talk to her doctor about titrating her dosages to a lower dose.  She reached her hand out to pick up something and what I saw... I was completely unprepared for.  I have seen her hands shake before, bit this was not a shaky hand-- this was a full tremmor.  Not only was her hand tremmoring, her jaw and neck were having tick like twitches. It looked eerily like someone with Parkinson's disease.

Now the irony of that statement is that earlier a friend and I were discussing the recent suicide of actor Robin Williams. I questioned whether he might have been taking psychotropic meds and if this could have contributed to his suicidal decision. She had responded that new media coverage had reported that Williams had recently been diagnosed with Parkinson's disease. I had shared with her there there is research now showing that long time use of psychotropic medications is related to a greater risk of neurological diseases such as Parkinson's, dementia and Alzheimer's disease.

Within hours of that conversation my daughter is standing in front of me with Parkinson's-like tremors that has me really freaked out. I called her doctor's emergency after-hours line and asked for a call back!!

She was asking me if I had anything for a headache so I gave her some naproxen and then went back to searching the side effects of the one med that is most concerning us, Geodon, while we were waiting for the doctor to call us back.

This is what I discovered about Geodon on the National Institute of Mental Health (NAMI) website:


What are possible side effects of Geodon®?
Common Side Effects
·         Headache, anxiety, upset stomach
·         Feeling dizzy, drowsy or restless

Remember that headache she was asking for pain relief for?  Laura has suffered with migraine-like headaches for years. She is highly medicated for ANXIETY (a side effect of this med!!) She is always nauseous, but we sort of wrote it off to the cocktail of meds she was on and thought it was just something she would have to adjust to. :-(

Now if anyone knows my precious girl.... she is ....well....just NOT graceful!! My beloved Laura is just klutzy, two left feet-- she is often dizzy and uncoordinated.  (Can you hear my Mother GUILT tugging at my heart?)  It was right there in black and white! These are the MOST COMMON side effects of the meds.

I took a deep breathe and began to read further.... now on to the SERIOUS side effects of this medication:


      Serious Side Effects
·         Some people may develop muscle related side effects while taking ziprasidone. The technical terms for these are extra-pyramidal effects (EPS) and tardive dyskinesia (TD). Symptoms of EPS include restlessness, tremor, and stiffness. TD symptoms include slow or jerky movements that one cannot control, often starting in the mouth with tongue rolling or chewing movements.


The doctor finally returned our call and we explained what we were seeing in the video above and how these symptoms had just started to occur over the last 3 days. He asked why she did not call sooner-- and she said she was afraid if she mentioned she was having side effects that he would up the dose.  He instructed her to stop taking the Geodon  IMMEDIATELY. No titrating down, Stop immediately! He asked us to call the office first thing Monday morning (as they are closed on Friday) and they will work her in ASAP. I asked him if he would be willing to take her off everything except the ones we knew were working well, and before all these others symptoms started.  He said he would like to do that as well!  OK-- my faith is a little bit restored that her doctor was actually listening to my concerns of what I was seeing.  It did not hurt that I mentioned I was an LPC and was very familiar with bipolar and mental illness. He agreed with my observations and concerns :-)

Heart-breaking as this is-- I think we have just hit a major MILESTONE!  Her psychiatrist has listened to every one of our concerns and seems to be willing to go back to ground zero where she was stable and functioning well! 

I am looking forward to see what will happen at that appointment and how it may change Laura's life for the better! I am breathing a huge sigh of relief tonight!!

Sunday, August 10, 2014

What Life is Like on Psychotropic Medications: In Laura's Own Words

As Laura and I begin to document her journey, today I am posting something Laura has written in her own words about what life is like for her as she lives through the side effects of her psychotropic medications. ~ Dawn

What Life is Like on Psychotropic Medications


by Laura Irons

Drugs. Everything in my life seems to come down to drugs. The ones I hate, I have to take under threat of hospitalization. The ones I like, I have to abstain from for reasons like health/prison time.
I’ve come to find that my body and brain are mostly fueled by chemicals. The medications ruin my appetite, so I don’t eat much. The amphetamines and anti-depressants wake me up every morning. The anti-anxiety meds keep me calm throughout the day. The anti-psychotics, tranquilizers, sleeping pills and mood stabilizers put me to sleep every night.

It’s a scary feeling to go to sleep with that much medicine in your system. I’ll explain. The medicines’ effects kick in one by one. First, your mind slows down in a barely perceptible way. Your limbs feel heavy. Your body is sluggish. 

Next are the physical effects. You have to sit down because your limbs are rubbery. You don’t lie down because your mind is still buzzing from the amphetamines (most ADD meds are amphetamines). You’re too awake to fall asleep. Your mouth dries out and your body takes on more weight, but you try to fight it off. Half an hour passes.

Each movement feels like moving through water. Your muscles protest everything you try to do. It sucks if you’re hungry or in need of something. By this stage, you’re too uncoordinated to leave whatever spot you’re in right now. Your mouth is too dry to eat and your mind is starting to slow way down.

Next, the mood stabilizers kick in. These are only observable if you know the effects well enough. Your mind becomes foggy and you begin to space out. You forget if you needed anything. Even if you do, it’s not worth the effort.

By now the tranquilizers have taken full effect. All you can really do is lay there. I hope you’re comfortable with the room’s temperature and your body’s current state, because it’s too late to change anything. Your mind is probably racing to compensate for your body’s uselessness. Your mouth might as well be full of sand.

Next, the anti psychotics kick in. This is the part that shuts your mind down (but not all the way). Slowly, you lose the ability to talk in coherent sentences. Your thoughts become jumbled and your brain feels overworked and exhausted. Your eyes close involuntarily, but your brain still hasn’t shut down. It’s time to take the sleeping pills.

You lay there for a while. You don’t know how long. For me, it’s usually about an hour. You’re in a state of sleep paralysis while your mind is struggling to function through the chemicals. You’re fully aware of being involuntarily drugged. Your body is out of commission and your brain is on the fritz.
If you’re anything like me, your mind will now begin to torture you. First come the bad memories from your past (never the good ones). Next are the unanswerable questions (Why have I survived when those close to me have died? Why am I here? Do I have a purpose at all? When will I understand those around me? When will I understand myself? Will I ever feel alive? Will I be ready when life actually gets better?). 

After that comes the fun part. Your brain will become a sadistic machine torturing you with your own past, present, future, hopes, and fears. Anything you can think of will become warped. Your mind is responding to the paralysis in your body with a sort of panic. Your body is out of control, so your thoughts are filled with unconscious fears. You’re left paralyzed, drowning in the turbulent sea of your sick subconscious.

The last stage is the blackness. I call it this because there’s nothing else to it but blackness. You’re not conscious, but you’re not asleep. Your body is drugged into paralysis and your mind is drugged past coherent thoughts. A vague idea or concept may whisper through your headspace, but you can’t catch it. You don’t even try.

There’s not a concrete thought in your mind. You’re unable to move, even if you’re uncomfortable. You feel the weird sensation of weightlessness that comes with total muscle relaxation. You simultaneously feel like you’re sinking down, deep down, under water.

One by one, your senses turn off. Your eyes don’t register any light that may be outside your eyelids. Your body is numb to all sensation. Your ears process sound as if listening from under water. Your mouth is too dry to taste anything. All you can smell is your own breathing.

Your mind stays awake. Why? Hell if I know. But for a brief period of time after the medications take you out, your mind observes your body shutting down and remains conscious enough to experience the feeling of not experiencing any feelings. It’s why I call the final stage the blackness. You’re devoid of all feeling and sensation, sinking deeper into your bed with your eyes glued shut and your brain malfunctioning. It’s just you and the darkness now.

If you’re lucky, the sleeping pills will kick in before you start to wonder if this is what death feels like. Once you start wondering about that, you can’t stop, and you won’t sleep at all.

Saturday, August 9, 2014

Saving Laura: The Perfect Storm

The last few weeks have been very eye-opening for me as I have helped my daughter file for disability. She has given me permission to write about our journey and what we have discovered along the way.  First, I have to say I NEVER would have imagined having to help my daughter apply for disability at the age of 20. To look at her she seems perfectly fine and able-bodied. But looks are quite deceiving.

As we watched my daughter’s mental health begin to deteriorate we were scrambling for answers and help. To completely understand how we got to the place of filing for disability for a 20 year old woman in the prime of her life, we have to go back a few years and put some context to how we got to this place.

At the age of 10 my daughter was sexually assaulted by a member of our church.  We did not find this out until age 13 when we discovered she had been cutting herself. We began to seek counseling for her cutting. We wanted to see if we could determine what was going on inside our daughter that was causing her to hurt herself. During her course of counseling we discovered a journal in her room that was never meant to be found. It was discovered under a china hutch-like Murphy bed that was bolted to the wall. The journal was found behind the cabinet and under the 6 inch space in which you had to contort your hand to just to reach the space. The journal began to tell a story that would forever change the course of all our lives. With this new information, the cutting finally had some context that made sense. When the counselor confronted her with knowledge of the sexual abuse, Laura curled into a fetal position on the floor and just cried. The counselor asked her if she felt she would hurt herself if she went home and she said she felt suicidal—so for her safety we had her admitted to a local psychiatric hospital for observation.

While at the hospital the doctor diagnosed her with depression and began her on some antidepressants.  Laura continued in counseling with an individual therapist to start working through some of the trauma, now that ”the cat was out of the bag.”  It was a long and emotional rollercoaster for her.  The school year came around and she began having trouble concentrating in school (which is not unusual for victims of trauma) but the school recommended we get her evaluated for ADHD.  So off to the doctor we went again. By asking a few subjective questions, the doctor declared she had ADHD and we left the office with a prescription for an ADHD medication (which are amphetamine based meds,) So by the age of 14 my daughter was now on 2 psychotropic medications.  

The next few years were rocky—as most teen years tend to be with all the issues of puberty, hormones and body changes.  We asked the counselor if this could be side effects of the meds and she assured us the meds were safe and this was just likely normal adolescent behavior. But the rollercoaster ride my daughter and my family was on seemed to be on steroids! We began to wonder if this could be side effects of the medications and questioned the doctor greatly about this. The doctor assured us the medications were perfectly safe and she likely just needed an increase in the dosage. So her dosages were taken to the next level… and so did the turbulence of the roller coaster ride.

By age 17 my daughter had gone through a turbulent pregnancy and had been off her meds for the safety of the baby.  Soon after she gave birth, and in the thick of being a single mom with post partum baby blues, and somewhat socially isolated since she did not have a car at the time, her world went into a dark, dark depression.  Her ob-gyn prescribed a new antidepressant which we had hopes would help her get over the hump of the baby blues. The meds had some very unexpected side effects that we were not prepared for.  She was experiencing insomnia on a level I’d never seen before. She would go up to 2 days with no sleep and she would have tremors. One night she felt off-balanced and fell and hit her head on our ceramic kitchen tile floor and ended up with a concussion. Thank God she was not holding the baby!  A few nights later she came into our bedroom about 3:00 a.m. and she was sobbing uncontrollably and saying “Something isn’t right! I don’t know what’s wrong, but something isn’t right!” She was sobbing so hard her body was literally shaking.  We called her ob-gyn the next morning who instructed us to make an appointment with a psychiatrist. We did ASAP!

Upon going to the psychiatrist’s appointment, the nurse practitioner ran her through a series of screening questions about mood swings (as if any postpartum mom didn’t experience those on some level!). Laura responded to the answers truthfully about her mood swings after the birth and the frequent crying spells and feelings of loneliness and depression.  Next, we saw the actual psychiatrist for less than 10 minutes who emphatically declared Laura had bipolar disorder. He took out his prescription pad and we left with yet more scripts for psychotropic medications.

Being a mental health professional, I sat down with her when we got home to look over the side effects of the medications and we discussed needing to be aware of them and when/if we would need to contact the doctor if there were any concerns. The concern that immediately jumped off the page at me was this particular bipolar medication could cause “a cardiac event” if doses were missed. So I sat there and told her EMPHATICALLY that she could not risk missing even one dose and she could not stop the meds without medical help. I explained the importance of communication with her doctor about any of the side effects—and sooner than later! (Little did I know that would put in place the ingredients for the perfect storm that would soon sound sirens on the life of our family.)

Every time Laura started experiencing symptoms or changes that concerned her, she would call her doctor and he would immediately up the dose. If the dose had to be adjusted more than twice then they would add a new med to the cocktail she was already taking. This perfect storm was now raging daily. We never knew what to expect or what we would find when we got home. Some days she would sleep 16-20 hours a day. Other days she could go 2 days without any sleep at all. She was on meds to wake her up, meds to make her concentrate, meds to make her happy, meds to make her calm down, meds to make her go to sleep and her world was just spiraling out of control and she had no words anymore to express to us what was going on because every time she would call the doctor he would add one more med to the mix.  

Then there was the day we got the call from my sister. Laura had been living with her as she was trying to start a new life. When I picked up the phone, as I saw my sisters name on caller ID, all I could hear was sobbing and I could barely make out any words she was saying. I began to raise my voice at her—“SLOW DOWN!! I CAN’T UNDERSTAND YOU!!” Then it was clear as day!” I can’t wake her up. She won’t respond. I don’t know if she is breathing! And there is an empty bottle of Seroquel on the floor next to her.”  I told her to call 911 and I literally walked out of my counseling practice in DFW and got in my car to head for Austin!

Life was never the same once the first doctor prescribed her the antidepressant. That made her foggy-headed and unable to concentrate, so then came the ADHD med which was amphetamine-based. After taking that for a while she was wired! Then the doctor diagnosed her with anxiety so he added in benzodiazepines.  When she was at the place of normal postpartum depression they diagnosed her with bipolar disorder which added in mood stabilizers and anti-psychotics to the mix.  The more I began to research the side effects it was frightening how many of the meds had suicidality as a side effect of the medication!  

Shortly after Laura was discharged from the hospital she moved back home. After the suicide attempt we were all terrified. So we requested she keep seeing her psychiatrist so he could monitor her better and keep her safe. Oh how I wish I knew then what I know now….. I now know that I was basically sending a lamb to the slaughter. But I truly thought I was doing everything I could do to help my daughter.

So within a year of her returning home, her life had degenerated to such a place we were filing for disability since she was completely unable to work. Her fear of being around people had gone far beyond a normal “phobia”—she was paralyzed by the fear and now a prisoner in her own home. She was afraid to drive places and would have panic attacks multiple times a day. We would help her set appointments for counseling sessions, but many of the meds had her sleeping schedules so off-kiltered that she was either a walking zombie or could not wake up with any level of functionality at all and she would miss the appointments.

Soon we began hearing her tell how she was afraid because she was meeting people who knew her but she had no idea who they were. She would lose days of time. She could not remember what day of the week it was, or even what month it was. She would suddenly become alert and find herself in places she did not know how she got there.

And that is when she was diagnosed with Dissociative Identity Disorder. As a therapist, I know a little about this condition. It is typically trauma-based and is a coping mechanism for the person to be able to process the trauma on their own terms. So the psyche splinters into multiple personalities in order to process. That is when Laura introduced us to Amy, Ashley, Amber, Sophie, and “The Other”. 

Amy is the fierce gatekeeper and protector of Laura—the others fall in line with Amy’s orders. Each is a part of Laura—just different expressions of how she can handle the trauma of all that has transpired from the original trauma at age 10 to the psychiatric trauma of the meds and side effects today at age 20. 

And if that was not enough for her to deal with, in February of this year Laura's fiance had decided to take advantage of a time when Laura was depressed and wanting to cut again. Instead of helping her get some professional help, he waited until she was passed out on her medications and took an exact o-knife to her legs and cut into the flesh of her legs up to 18 and 20 inch vertical incisions -- multiple incisions-- that, in the end would need stitches, but due to the amount of blood loss he became too afraid to call for an ambulance. She never got stitches. She drifted in and out of consciousness and woke to her roommate trying to help clean the blood off her.  The friend was also too afraid to get Laura medical attention and she almost bled-out from severe blood loss.  The roommate attempted to hold the flesh of Laura’s legs together with butterfly tape. The tape snapped and would not hold the flesh together. She needed stitches but her friends were too afraid to call for help for fear the fiance would go to jail. As we look in retrospect, that was the straw that broke the camel’s back. She had a complete breakdown and went to the hospital, one more time, for suicidal ideations and depression. It was in that hospital stay where she found the courage to end the relationship and file assault charges on the ex-fiance.

I am just a mom that has resurrected that mother-bear instinct as I have heard my daughter call us for help. When she cries, she tells me, “My brain just doesn’t work right”.  And I cry too—because she is absolutely right. Her brain us under chemical assault and it is largely my fault. I trusted psychiatry. I trusted the doctors. I had no idea the doctors had a bottom-line affair with Big Pharma and they were strange bed-fellows. At no time was my daughter a consideration in that sorted relationship. Every time she reported a side effect they warn you about in the packaging instruction, the doctor only upped the dose or added one more med to the mix.  I am now a mom on a mission. It is time to SAVE LAURA! I am armed with hours of prayer, hours of research and a providential GOD who is guiding me to doctors who are able to help remedy the chemical poison that is holding her hostage. My God is able! I WILL see her FREE by the power of God through Jesus Christ.  Every now and then I see glimpses of my Laura in there…. And she is literally having moments of clarity where she sees us, and with tears running down her cheek, she simply begs , “HELP ME!”

If you know and love our family, please pray! We are on a journey to wholeness and wellness for our Laura Ashley!!