Medication review: Clozapine

Note: this is an account of my personal experience with the drug. Any side effects mentioned below may never happen to you. Please don’t use my personal experience as the reason for not taking your medication. Always consult your psychiatrist regarding any medication changes.

Clozapine is generally regarded as the gold standard for antipsychotics. When someone has a schizophrenic disorder that isn’t resolved by other antipsychotics, Clozapine usually comes to the rescue. The main reason why Clozapine is not used as first-line treatment is because of the serious side effects that accompany the drug. Death is a rare, but real concern on Clozapine, because of its ability to induce agranulocytosis, aka a dramatic and catastrophic reduction in white blood cell count. Clozapine can also cause heart issues.

Before being allowed onto Clozapine, I had to undergo a full blood test and also heart tests. The heart tests involved an ECG, which is a test of the electrical activity generated by the heart as it contracts. I also had an echocardiogram, which is when sound waves are used to give a moving picture of the heart. Once it was shown I had a normal white blood cell count and a good heart, my doctor registered me onto the Clozapine registry, and I was able to start.

I was required to have weekly blood tests, and that would have persisted for three months. Afterwards, I was expected to have monthly blood tests.

Clozapine was quite sedating for me, which was fine because it helped me sleep. I had a slight drooling problem, which is apparently a common side effect, and I felt dizzy and nauseous in the beginning. The latter two side effects eventually went away after about a week.

The main issue I had with Clozapine was it consistently sent my white blood cell count bouncing. Being naturally on the lower side of normal, Clozapine sent it into the low ranges multiple times. Eventually, I had to stop because my white blood cell count went to 1.5 [normal is 2.0 - 7.0].

Overall, Clozapine is a very good drug, but you must be prepared and able to have weekly blood draws and it helps if your body plays nice. Personally, I think it is not a drug for someone with a naturally low white blood cell count.

 

-Sam A Robryn

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Medication review: Invega

Note: this is an account of my personal experience with the drug. Any side effects mentioned below may never happen to you. Please don’t use my personal experience as the reason for not taking your medication. Always consult your psychiatrist regarding any medication changes.

Invega was my second attempt at an anti-psychotic. Invega was chosen because I was experiencing psychosis – I was believing that there were secret messages written into newspaper articles and other print material, that made derogatory comments about me. While a part of me recognised that such thoughts were erroneous [why anyone, let alone several authors, would even know about my existence, let alone bother to encode messages to me?] yet, I felt compelled to scan the newspaper every morning for messages. Invariably I will find a few of these “messages” and become upset, to the point where I couldn’t read a newspaper for its intended use – to disseminate information.

I started on 3mg of Invega, and my psychiatrist intended raising it to 6mg.

Initially, 3mg of Invega worked very well. My beliefs quickly subsided, and it was with a great deal of relief that I re-discovered the ability to read newspapers and articles. Being an avid reader, I had missed the sensation of reading.

Unfortunately, I discovered that Invega was sending my anxiety skyrocketing. I was ruminating over the most petty topics. Worst of all, I was ruminating about past events, and about what would have happened if I made a different choice to what I had made. It was maddeningly pointless, yet I couldn’t stop. I became an anxious wreck who paced the house constantly.

I upped my dose to 6mg and my anxiety reached such a level that I thought I would implode from nervous energy. I immediately called up my psychiatrist who told me to return to 3mg.

So, I continued taking 3mg for several more weeks. During that time, people started remarking that I appeared to have lost all facial expressions. I discovered an inability to handwrite, to the point where I had to ask my mother if she could fill a form out for me because it was too difficult to form legible capital letters.

Worst of all, I lost the ability to hold meaningful conversations. While I comprehended conversation directed at me, I found it very difficult to formulate responses. I found myself constantly hunting for words, and my mind was the equivalent of a desert – dry, empty and without much happening. By the time I did formulate a response to something, I would discover that the conversation had moved on. It was very uncharacteristic of me, a person whom others knew of as one who usually had much to say with any given topic.

I knew there was something drastically wrong when I was having a coffee with some friends, and could not formulate meaningful responses to the conversation.

I went to my psychiatrist again and told him of my issues. He did a brief physical examination, and concluded that I was experiencing Parkinsonian symptoms. He also took me off Invega.

I have no idea why I responded the way I did with Invega. I was only on a starter’s dose of the drug, yet it was able to dramatically affect my functioning. The only explanation my psychiatrist came with was that I was very sensitive to Invega, and made a note that I should never take it again.

 

-Sam A Robryn

Medication review: Abilify

Note: this is an account of my personal experience with the drug. Any side effects mentioned below may never happen to you. Please don’t use my personal experience as the reason for not taking your medication. Always consult your psychiatrist regarding any medication changes.

Abilify was my first anti-psychotic. It was prescribed to me by my first psychiatrist, after I plucked up the courage to tell him of some of my other “interesting” experiences, such as the sensation of being monitored by malevolent beings, thought broadcasting, etc.

The starting dose was 15mg, and I was recommended to take it in the morning, as apparently it can be quite activating.

The first morning rolled in. I woke up, took 15mg, jumped into the shower, had breakfast and continued my merry way.

By lunchtime, I was so tired that I just barely managed the drive home. I crashed for about two hours as I was absolutely exhausted.

I thought that it may have been just the first day of Abilify, so I repeated the routine the next morning. While I remained awake enough to remain in the office for the whole day, I did slip off and slept for an hour in the car. Realising that this was an untenable daytime routine, I decided to switch to night-time dosage. Once I did, I found myself having a good night’s sleep and would wake up feeling refreshed.

For a few weeks, I remained on 15mg. Slowly, I realised a strange, restless feeling that would overcome me at various times. I felt the urge to pace, and if I couldn’t pace, then I found myself tapping my feet and moving in my seat. Sitting still was an effort that became almost impossible with time. I found myself filled with this strange energy that would not dissipate with exercise. Instead, it felt as though movement fed the sensation, so that the more I moved, the greater the urge was to continue moving.

I also felt very touch-sensitive in certain areas. I already have a sensitivity in the region around my collarbone and neck, and the sensitivity was amplified while I was on 15mg Abilify. The slightest touch of the area by a piece of clothing was like fire.

Eventually, I reduced the dosage to 7.5mg. My feeling of restlessness [later described as "akathesia"] disappeared, as did my sensitivity.

Life went well on 7.5mg for a few months, until I noticed that I was having some strange symptoms. I began to scan the newspapers for derogatory messages in articles, and while a part of me recognised the belief as false, most of me believed it was true. Every day, I would scan the newspapers and inevitably I would find a “message” and become upset.

By then, I had changed psychiatrists [to my current one] and he started raising my Abilify. I went back to 15mg, but did not notice a return of akathesia. In fact, I noticed absolutely nothing from Abilify except the feeling of emptiness. My newspaper scanning continued.

I went to 23.5mg, and I still noticed absolutely nothing from Abilify. My newspaper scanning began to intensify, and I was beginning to scan all print material. It was at that point where my psychiatrist decided that Abilify was no longer effective, and I changed to a different drug.

Abilify ultimately didn’t help when I became symptomatic. Aside from giving me a good night’s sleep, there wasn’t many positives. I also think that starting on 15mg resulted in akathesia, which is apparently a common side effect with Abilify. It seems that titrating upwards can help avoid akathesia – once I became accustomed to 7.5mg, there was no akathesia when my dosage was raised.

 

-Sam A Robryn

Helping Your Child Cope With His or Her Bipolar Diagnosis

I also did a post on Helping Your Schizophrenic Child. There is a lot of good information there that can also help if you have a Bipolar child. I suggest reading over it and seeing if any of the suggestions there can help you here as well.

This can be quite difficult. A lot of it depends on the child’s age, maturity level and exactly how much your child is able to understand. I would suggest the weather explanation that I used to explain to my children about my own Bipolar Diagnosis. You can find that here at Explaining Bipolar To Children. This is the best way that I know how to help a child understand how Bipolar actually works. There are also many books out there pertaining to this as well. DBSA offers a free, printable, pdf booklet on explaining to children about Bipolar as well. I actually just printed this booklet out and used it with my daughter and she was able to understand clearer about what she is going through

I must add here that although we are working on a Psychosis NOS diagnosis with her, she does have mood issues as well. Within time her current diagnosis may change to the same as mine….Bipolar Disorder and that is why I’m focusing on that topic with her. Bipolar can and does have psychosis, so it would not be surprising to any of us if her diagnosis were to be changed in the future.

The links I entered above are great starting points and can offer you loads of information in regards to how Bipolar works. But they don’t tell you how to answer those hard questions that are sure to follow after you explain to your child what illness he or she has.

Some questions you may be faced with:

“Will it ever go away?” You really have no definite answer here. Right now, that answer is no. But advances in medicine, science and technology may one day turn this answer into a yes. Explain here to your child how medication and therapy can help them to control and manage their symptoms, but right now there is no cure for it.

“Is it contagious? How did I get this?” No, it is absolutely not contagious, no one can catch Bipolar Disorder because someone sneezed on them. How to answer the second part of this question is easier than you think. A simple response, “Just as you got your blue eyes from Daddy, your nose from Nanny, you got the Bipolar from Mommy. It’s just one of those things that runs in families.” 

“How will the medication help me?” Sounds simple to answer this, but it’s not. After explaining how the medication will help them with their moods, will help them sleep and in some cases help them to not hear or see those scary things anymore, you may end up with more questions. Questions about well….how? The how question is actually easier than you’d think. Just let them know that the medication will help the their brain work a little better so that it can help the rest of their body work better too. This seemed to pacify my daughter.

First and foremost before you do any answering of any questions, make sure your child knows and understands that their illness is NOT their fault and they did nothing to cause this to happen to them. 

If the booklets above don’t help your child understand how Bipolar can make them feel, you are going to have to try to fill in the blanks. But they should do a pretty good job. The books are very easy for young children to understand. I imagine even my 5-year-old could understand what the book is trying to explain to them.

Ways to help your child cope:

• Make sure they understand that they are not alone. That there are other children suffering from the same disorder as they are. Share your own story with them if you feel comfortable. Gitty knowing Mommy has days like she has, has made it a bit easier for her to come and talk to me. She knows I understand. At the same time, I’ve become the person she takes her anger out on, probably because she knows I don’t take it personally. It’s not her……..it’s her illness.
• Encourage your children to talk to you and your spouse about how they are feeling. If you know what kind of feelings your child is having, the better you can help them cope with those feelings.
• Give your child a journal and tell him/her it is their own private space to write down how they feel or draw pictures about how they feel. This can be wonderful therapy for anyone. Sometimes just writing about their day can make them feel better.
• Make sure your child understands the importance of being honest with doctor’s. Their doctors’ can not help them if they don’t know how your child is feeling.
• Most importantly, make sure your child knows that if they feel like hurting themselves they must tell you or another trusted adult right away. That you won’t be angry with them and that this is a symptom of their illness and it needs medical attention. Stress this as much as possible without downplaying the importance of this.

Ways to help your child manage his/her illness:

• Help your child to chart her moods. If she’s old enough, after learning, she can do this on her own.
• Be in control of your child’s medication. I wouldn’t suggest allowing a Bipolar child to control their medication at all. It’s just too much of a risk to take in doing this.
• Teach your child coping mechanisms: walking away when she feels angry, writing in her journal, humming to herself, going to a quiet space when she feels agitated or angry, punching pillows instead of walls to release some of her aggression.
• Help your child set small, achievable goals and reward them accordingly.
• Let your child know there are still consequences for actions. This is hard for some parents’ to understand. How do you punish something that is not their fault, but that argument isn’t going to hold up when your child is an adult and punches a guy on the street and goes in front of a judge. There will still be consequences for his or her actions then, just as there should be now. Use this opportunity to teach your child a different way of handling the situation.

Bipolar children are and can be very successful. Help them understand this by pointing out famous people who have overcome their Bipolar Disorder and redirected their energies into something they love. Here’s a brief list you can use until you have time to find more on your own.

1. Abraham Lincoln (President)
2. Jim Carey (Actor)
3. Marilyn Monroe (Actress)
4. Vincent Van Gogh (Painter/Artist)
5. Edgar Poe (Writer)
6. Issac Newton (Scientist)
7. Ludwig Van Beethoven (Musician)
8. Mark Twain (Writer)

Help your child find their inner talent, their skill, the thing that they are passionate about. Then, provide them with the resources necessary so they may continue being passionate about whatever they chose. This may be a place of solace for them, a place for them to unwind, something to do to take their mind off of the illness they have to contend with every day of their lives. Encourage them, tell them how awesome of a job they are doing and last, but absolutely not least, SHOW THEM YOU LOVE THEM! 

*I also suggest keeping a mood journal of your child yourself. This will give a different perspective from the way she observers herself. Writing down any behavior issues, outbursts or meltdowns will help the doctor see it from both sides. I would suggest right from the beginning compiling a folder with all your child’s information in it. Medical, Psychiatric, Insurance, notes you’ve taken, records from the doctor, even a daily or weekly journal of what’s been happening. You can bring this information with you to all doctor appointments and in the event a hospitalization is necessary.* 

Websites Worth Visiting:
bpchildren.org
thebalancedmind.org

Until next time….

Becca ♥

DBSA News!!!

So….while we wait for me to do some research on the topics I listed Here. Which by the way I need some votes on. In the meantime, I thought I’d share some news.

I emailed the director to our local DBSA and will be attending my first meeting on May 2nd! I explained that although I was not in a position to donate financially, I am more than willing to donate any time volunteering. She immediately emailed me back and told me that she’d like me to come up with some fundraiser ideas. This immediately prompted me into action mode and I sent her about five different ideas that I think could work. I even came up with a few more after I had already sent the email, but I’m sure we will have a chance to discuss it further.

So….it’s starting. I’m getting the chance I’ve been looking for. The chance to advocate within our community to help those with Mental Illnesses and I’m extremely excited about it! May 2nd can’t come here soon enough for me! It will be nice to connect with other’s on a personal level, like myself. To hear their stories and know I’m truly not alone. I want to help and give back to the support group as much as I can.

We’ve decided I’ll attend the first meeting alone. Give me a chance to feel the group out, make sure it’s the right fit for me and if everything is a go, then I’ll take Hubs with me for future meetings! I do have a really good feeling about this though and it’s something I’ve been wanting to be a part of for a very long time!

Wish me luck!

Becca♥