Clozapine (Clozaril) Labs & Registration

Friday was the beginning of the Clozaril rechallenge (generic is Clozapine) process. I had my blood work done; there was some difficulty getting the lab to send the results to my doctor and my pharmacy. It was partially my fault, I did give them the wrong fax number for the pharmacy, but it took 4 phone calls to try to fix the mistake. Even when they finally said the problem was resolved, it turns out that it wasn’t; the pharmacy never received the results. Luckily, I ended up talking to one of the nicest and most caring pharmacists since my father and aunt. He was happy to call the lab himself and request my results so that I could get my prescription. Once he got my lab results, he realized that I had to be registered again in the Clozapine Database because I hadn’t taken the medication since this past summer; all patients need to be registered by both their pharmacist and their doctor. My pharmacist told me he would call me once the registration is complete so I can get my prescription filled. There aren’t many pharmacists that are as polite and happy to help as he was.

Sometime tomorrow I should receive a phone call from the pharmacy letting me know I can bring in my prescription. I admit that I am nervous. I’m not nervous that I will end up with some of the horrible side effects of Clozapine such as neutropenia, which is an abnormally low level of white blood cells, making the patient susceptible to infections. This is why there are so many protocols with Clozapine. I feel like I should be nervous about it, but I’m not. What I am nervous about is the fact that I don’t know if this will work or not. I’m trying to remain positive; I keep saying that this time it will work, I won’t get a fever, I won’t have to go to the hospital, and there won’t be any problems. I’ve been so nervous about this rechallenge, my anxiety level has been much higher than normal; I’m anxious even sitting at home in my comfort zone.

Is this weird that I’m more concerned the medication won’t work than I am concerned that the med will cause serious side effects? I think it’s just because I don’t know how much longer I can live like this. I have had suicidal ideations for more than 5 months. My hallucinations keep getting worse making the paranoia intolerable. And in my mind, the worst part of it all is that I won’t do anything about it. I can’t take my own life, no matter how much I think about it. I know that technically that’s a good thing, but if you lived in my mind for even a day, you would understand. Every day I put a smile on my face and do my best to pretend everything is okay, but inside I’m a disaster. I want to live and be happy to be alive. I need this medication to be the answer. I’ve taken pretty much every other medication and I still do ECTs. I currently take 7 other psychiatric medications, 2 additional meds to treat side effects, and 3 other medications for physical conditions. I just need to catch a break, I’m hoping that will happen with this Clozapine rechallenge. We’re all about to find out.

Wellness Recovery Action Plans

I decided to complete the WRAP (Wellness Recovery Action Plan) paperwork. I did one years ago when I lived with my mother, and it was very helpful. It could probably help out my husband as well. WRAP helps people figure out and integrate wellness tools and healthy strategies into their lives. It helps both those with mental health illnesses and their caregivers. It asks open-ended questions and statements such as how are you when you feel well, what do you do to stay well, what are your triggers, what do you do when your triggers emerge, what are your early warning signs, and what are signs that you’re about to break down. These questions are just the beginning of the documents. It will take a while to complete. I will probably ask my husband and mother to help me complete my WRAP.

I think it can be a vital part to the maintenance and recovery of those with mental illnesses to have this type of information documented. The thing I like the most about the WRAP is that it helps us create a crisis plan; informing our loved ones and caregivers exactly what we do and don’t want, such as meds we do and don’t want to take, what hospitals we do and don’t want to go to, and who we are willing to let take control in a crisis situation. Completing the WRAP documents gives those of us with mental health illnesses a voice; we get to make decisions when we are well about how we want to be treated when we are sick.

The WRAP that I chose is from NAMI (National Alliance on Mental Illness) in Austin, TX. It can be found using the link below. By Googling ‘Wellness Recovery Action Plan’, you can find many different options, and if you choose to do one, simply choose the one that’s right for you. It’s not easy to complete; it takes time in order to be thorough. It has helped me and my mother before, I’m sure it will be helpful again.

Click to access Developing-a-WRAP-Plan.pdf

Blood Work Starts Now

As my husband left for work this morning, he brought the mail inside. One of the envelopes was from my psychiatrist. It contained a weekly standing order for blood work to monitor the Clozaril along with a prescription that I can give to my pharmacy once I hear back from my doctor about my blood work.

I wasn’t nervous until just now. In fact, I was slightly excited to start Clozaril because I was hoping it would help level me out and particularly get rid of my hallucinations. I was thinking that it could be the solution I’ve been waiting for. However, now that it’s time to start the process, my heart started to pound, chest pains developed, my breathing quickened, I became sweaty, I started rocking back and forth when sitting, and I couldn’t remain still when standing. Basically, it was a minor anxiety attack. I didn’t know where my fears were coming from. I don’t like anything new, but this isn’t new. This is a rechallenge. I tried it for the first time last summer with no success.

I still want to believe that it will work out, but right now, I’m not so sure. I worry that my Ashkenazi genes will cause problems again. My mind is going a million miles an hour, and it’s going to some bad places. I keep thinking that if this doesn’t work, then there’s no hope left for me. Technically, I know that’s not true, but sometimes fear takes over the mind. There are still a few other options, even though I really don’t like them, they are there. And there is always research being done resulting in new medications and treatments that are often very successful. Will I ever be a part of the success when it comes to treating my bipolar disorder? It’s been a long time that I’ve been unstable; it just makes me question a lot of things.

I simply needed to get all of these thoughts out of my head so I don’t continue to obsess over all of it. I think this has helped clear my mind even just a little. At this point, I feel calm enough to drive, and that’s all I needed. I have stopped shaking and I can breathe better. I don’t have to leave for another 40 minutes. I’m going to take that time to continue calming myself.

Living With Anxiety

Living with any type of anxiety disorder is one of the hardest things a person with mental illnesses can deal with; at least that’s how it is for me. There are many forms of anxiety disorders including Generalized Anxiety Disorder (GAD), Panic Disorder, Social Anxiety/Phobias, Obsessive Compulsive Disorder (OCD), and Post Traumatic Stress Disorder (PTSD). Personally, I live and struggle with PTSD due to an abusive relationship that occurred 13 years ago. No matter how much I try to get past everything, I still have flashbacks, fears of anyone I don’t know (especially men), I have a hard time relaxing, I frighten very easily, I avoid anything new, I struggle to sleep, when I do sleep I have nightmares, and I have portions of the abusive time that are mostly a blackout. These are only some of the symptoms I deal with; it’s a huge battle that I fight every day. Sometimes I feel absurd because of how much my anxiety runs my life. I do the best that I can to continue to live my life, but it doesn’t feel like it’s enough.

One of my biggest difficulties is that I do not like having anyone behind me. I’m constantly looking over my shoulder to see if I’m ‘safe’, just so I have a moment to breathe. This makes running errands, such as grocery shopping, very strenuous. It doesn’t really matter where I am, as long as I’m outside of my house, this is a major issue. I wish I had eyes in the back of my head. Also, my therapist tells me that I behave certain ways in all types of relationships, such as giving without thinking of myself, because of the past abusive relationship. I even had over a year long period where I could not handle touching others. Now, I can shake hands with someone if necessary without having an anxiety attack, but it still terrifies me. If I know a person well enough, such as family or close friends, I am even able to hug them. This is a huge amount of progress.

Living with anxiety is about knowing your own boundaries; what helps you, and what makes things worse. Since I don’t like people behind me, my husband generally walks behind me in public, this helps me feel safe because I know he wouldn’t let anyone hurt me. Sometimes when we’re in public, he will hold onto my belt loop or vise versa, also helping me feel safe and comfortable. Benzodiazepines, such as Valium, are very useful, but I try to only take them when absolutely necessary. Everything I do, even just getting mail from the mailbox, has potential for an anxiety attack. I can’t just walk outside without thinking of all the possibilities. I look out the window first to see if anyone is coming, when the coast is clear I go as quickly as possible to the mailbox hoping that I can go unseen.

I am always trying to find new ways to help deal with my anxiety. Knowing my triggers and boundaries is a huge part of managing my anxiety. I do the best that I can every day and try not to let my anxiety run my life. That’s easier said than done, however; it’s easier for me because I have so much support from my loved ones. I control what I can and try to prepare myself for the rest. I have thought about getting a therapy dog. One that could sense when I’m having an anxiety or panic attack and help calm me down, or sense my nerves and stand watch to make me feel safer. Therapy dogs can do so much good; it’s something I want to look into for the future as another tool to manage my PTSD.

I Finally Accept Who I Am Instead Of Hiding It

I’ve been living with bipolar disorder since I was 14 years old, in 1999. It has never been easy, but I’ve made it through with the help of my family and friends. I turned to drugs at age 12, which probably triggered the beginning of my episodes. I started seeing a psychiatrist and began taking medication in 1999. The best thing I had going for me was that I was always honest; I told on myself any time I did something I shouldn’t have. I have always felt the need to be honest. I was truthful about how I was taking care of myself. I always took my medications as prescribed, I went to every doctor’s appointment, and was honest with my psychiatrist/psychologist about the drugs I was using. I was even willing to admit myself to a psychiatric unit when necessary. I did these things, but was never happy about it.

I was never really ashamed of my diagnoses, but I wasn’t willing to tell people. I know it was mostly obvious, especially since I was a cutter for many years, but it wasn’t something I wanted to shout from the rooftops. I remember feeling worried what my friends and family would think. I told my immediate and extended family, and I received unconditional support from everyone. I even had a few family members take the NAMI Family to Family classes so they could better understand what I was going through.

After I got sober in 2004, I began a life across the country. I got a great job and I even received a fantastic promotion after 1 year. I kept my mental health diagnoses mostly to myself. I was concerned of what my co-workers and my friends from the 12-step program I attended would say. I had a couple experiences where I felt looked down upon when people found out about my mental health, however, I think most of it was in my mind.

In 2009, I had an episode that was so extreme, I had to leave my job, move back in with my mother, and go on disability. At this point, I couldn’t hide anything, and I decided it would be too much work to try. As it turns out, most people didn’t even think twice about it. I even found several people that lived with the same things, these people became my friends. I became comfortable with my diagnoses; now, I don’t care who knows about my mental health. If someone thinks differently of me because of my mental health, then that’s their problem and their ignorance. It has taken a long time, but I have finally become comfortable with my diagnoses. Even though I struggle daily due to my mental health, I also feel that it has made me stronger.

It may have taken me many years to become comfortable with this part of who I am, but now that I have, I can spend my time and energy working on myself instead of trying to hide myself. Becoming secure with my diagnoses has allowed me to truly live my life. To manage my mental health I continue to take medication as prescribed, follow-through with all treatments, be honest with my friends and family, try to stay productive, find things I’m passionate about (I enjoy cooking, cleaning, and hiking), try to keep on a schedule, and try to get a good night’s sleep. None of these things are easy, but if I regularly work towards these goals, life becomes easier.

I am blessed with family and friends that support me no matter what. My husband, mother, and other family encourage me to do things that are healthy for me. If it wasn’t for them, I probably would never leave my house or see any friends. It is because of their love and support that I can accept myself for who I am. My bipolar disorder and other mental health diagnoses are only a part of who I am, they do not define me or dictate my life.

Facing My Fears

Facing fears is extremely difficult. I already have anxiety and/or panic attacks every day. Facing my fears just increases my anxiety, which I didn’t know was possible. I struggle to do anything new. I like what I am comfortable with; I shop at the same stores, I talk to the same people, I live a life of routine to help reduce my anxiety. Today has been a day filled with facing my fears. To begin, we changed our internet provider, so that meant a strange person had to come into my home to hook everything up. Of course, this happened while my husband was at work. The guy ended up being very nice and polite. I did the best I could to manage my fears and prepare myself for a stranger in my home. I made it through that; my dog, an 88 pound pit mix, helped me feel safe, but I still jumped every time I heard any door open or movement in my home.

Next, I went to a local tailor to get a pair of pants hemmed. I bought a new pair of pants at a discount store, which fit perfectly except for the length. This happened a week ago; I’ve been trying to get myself to go to the tailor for the past week, but I’ve been too afraid because it’s something new. I ended up going today; my body was shaking as I walked up to and into the store. Once I talked to the woman who worked there, I started to relax a bit. I was able to stand still as she pinned the pants at the proper length. That was a huge accomplishment.

Now, I’m supposed to go to a new support group. I was going to go with a friend, but life happens and she cannot make it tonight, which I understand. However, I still want to go. Even if I drive there but don’t require myself to go in, it would be a big step forward for me and it will make it easier to go in the future. The closer it gets to the time to leave, the more I start shaking and freaking out. I don’t know if I can do this; my heart is beating so fast I can hear it. I’ve already faced so much today, maybe I should give myself a break. However, I have been talking about going to this group for several months; it’s about time that I actually follow through. I know I need to go to a support group; it would be very beneficial for my overall mental health.

I have already faced my fears twice today, and everything worked out okay. Maybe that should tell me that this next fear to face will also work out okay. Or maybe that’s trying to tell me that I’ve done enough for one day and I shouldn’t force it. I don’t know. I need to stop shaking in order to drive there. I hope my Valium works; this is why I take it. I hope I actually get there. I suppose I’m about to find out what’s going to happen. Hopefully, this terrified feeling inside of me will dissipate.

An update about how it went going to the new support group:
I made it to the support group meeting, but I was overwhelmed when I walked in. There were more people than I expected. This group had 28 people there this evening, which is wonderful, but for me, it was scary. I pulled up a chair in the back thinking that no one would pull up a chair behind me, but I was wrong. Once someone sat down behind me, my fear kicked in even more causing an anxiety attack. My right leg started shaking uncontrollably, I started to rock back and forth, and my breathing began to struggle. I received a text from my husband, who kindly offered to come join me at the group as support once he got out of work, but I told him that I was going to be leaving shortly. I stayed for 1 hour, managing my anxiety attack through it all, and then I left at the break. The group itself was great and I did appreciate how organized the group was, but it was just too much for me. Maybe I will try it again one day with someone. For now, I am proud of myself for driving down there and staying for the first hour of the group.

Not Having Kids is a Choice I Struggle With

For multiple reasons, I cannot have children. In 2010, I decided to have my tubes tied. This was an extremely difficult decision. I made my decision because I know what I’m like when I’m manic and when I’m depressed. I have had many episodes over the years, I’ve even lost track of how many, and I came to the realization that there have been many times that I could not take care of myself; I was afraid to be responsible for a child. Also, I have always been on a lot of medication and I was scared to go off the meds during a pregnancy. With the help of my therapist, support group, mother, and friends, I made the decision to have my tubes tied. It was one of the most difficult decisions I’ve ever had to make, but I am grateful for my decision, it was the right thing to do for me. However, my heart breaks any time I see a small child.

Then in 2014, I ended up having a total hysterectomy due to ongoing medical problems. Even though I already had my tubes tied, it felt like a major loss. The surgery went well, but I have struggled emotionally with it ever since. My husband already has two kids, ages 22 and 24 (yes, I married a man that’s older than me). It works perfectly for several reasons; I can’t have children and he doesn’t want any more, we love each other, and we’re best friends (we had been best friends for years before we even started dating).

I get along great with both of his kids. His daughter, my step-daughter, had a baby this past September. I am a 31 year old, extremely proud grandma. We both love every second we spend with our beautiful granddaughter. It can be emotionally difficult for me. I frequently wish that I could have my own children, but I still know that I did the right thing for me. Every person is different; when making any decision, it’s important to make the right choices for you. I made the right decision for me, but that doesn’t take away the difficulty. Just because it was right for me, does not mean it’s easy. I was hoping it would get easier over time, but I’m still waiting for that to happen. Every time I see a baby, baby clothes, or toys, a part of me saddens. At the same time, another part of me is grateful because I know I made the right decision for myself.

At times I can feel jealous of those that are able to have children and deal with mental health disorders. I’m just not someone that can do that. I believe that the only thing that matters is that every person makes the right choices for their own life. No matter how difficult it can be to deal with, I made my right choice.

Bipolar is NOT an Adjective

I’ve been hearing it more and more often lately, people using the word bipolar improperly. In fact, it’s not just improper; it’s disrespectful and ignorant. One of the worst examples I personally heard was when someone said to me in a conversation, ‘I was so angry yesterday, I went bipolar on him.’ All I could do was think, how could someone even say that, especially when they know that I am bipolar. I didn’t even respond. I was so offended that I couldn’t react. There was another person, not diagnosed with bipolar disorder, that I was talking to, and I asked her how she was feeling. Her response also shocked me, she said, ‘I feel bipolar. I’ve been somewhat moody lately.’ These are just two of the many examples that I’ve heard. I can’t believe that people could say these things. I was so completely offended, insulted, and angry.

Bipolar disorder is a serious mental health illness. Bipolar disorder affects many millions of people worldwide. It has caused a lot of these people to go on disability due to their symptoms; I am one of those individuals. Sadly, many people diagnosed with bipolar disorder or other mental health disorders end up taking their own lives. Bipolar disorder, along with every other mental health disorder, is not something to joke about. I would have thought that it’s common sense not to use the word bipolar to describe anything, but apparently most people don’t have common sense. I strongly feel that people need to be properly educated on the seriousness of mental health disorders. People also need to learn to respect others.

We need to work on the mental health stigma using education and experience. I admit that I need to work on it too. I believe that a lot of people are not purposefully disrespectful, they are simply uninformed of the truth. When someone says something that is disgraceful to me, instead of telling that person how I feel, I hold it all in. I’m not good at expressing how I feel without having time to think it through. I’m also afraid to upset anyone, but what about my feelings? Expressing myself is something I’m working on, and maybe one day I’ll get better at it. Hopefully, everyone will get better about it. I’m not sure if we will ever live in a world without stigma, but it can’t hurt to try.

I Choose a Clozaril Rechallenge

Two weeks ago today, I say my psychiatrist, and we discussed my options for the next treatment method that we would use. This was not the first time we had this discussion. The topic began in November 2015. I kept putting off the actual decision making. My options began as IV Ketamine, MAOIs, or a Clozaril rechallenge. First, I wanted to do some research and then I wanted to discuss it with my mother and husband. Then we decided to do genetic testing and I wanted to wait for the results of that test. The genetic testing showed that I was unable to process folic acid, so I started Deplin, a prescription for L-methylfolate, which allows me to process folic acid. Deplin is known to increase the benefits received from other psychiatric medications. It takes 4 – 6 weeks to see the full effects of Deplin, so I wanted to wait to see how effective it would be for me. Today is the end of the sixth week. While I can see some improvements, such as my productivity, other aspects have had no improvement, like my auditory hallucinations, suicidal ideations, paranoia, and worthlessness to name a few.

I decided that I do need to try another form of treatment because what I’m currently using is not working well enough. I chose to do a Clozaril rechallenge. I am aware of the risks, but I feel comfortable because of the safety measures in place such as the weekly blood work. The first time I tried Clozaril, I lasted approximately 2 weeks before I got a fever and had to stop. I will pay close attention to any possible symptoms including but not limited to dizziness, sedation, blurred vision, increased sweating, nausea, flu-like symptoms, and a fever. I will contact my doctor daily to let him know how I’m doing, especially as I slowly increase my dosage. I am hopeful for this medication to help me.

If Clozaril does not work for me again, then I will have to try IV Ketamine since I am personally against taking MAOIs. I am prepared for just about any situation. I know that I need to have my blood drawn before I begin the medication. Every week I will get blood work done; it will be sent to my psychiatrist and pharmacy. I cannot get the prescription without having blood work done. This will be another adventure; I’m interested to see how it works out.

Anxiety and Panic Attacks Changing

I have been dealing with anxiety and panic attacks for many years. I go through periods where they happen more often, and then I’m lucky enough to go through some periods where they decrease. I have learned that I need to accept the fact that they are a part of my life; the more I accept them, the easier they are to get through. I’m not saying they’re easy, just easier. It’s probably because I can recognize when I’m having an attack and do some of the things that help me feel safe. For example, I try to go somewhere I can be alone or only with people I’m extremely comfortable with. If this isn’t possible, I sit or stand with my back to a corner. I’m afraid someone is going to come up behind me, but if I’m sitting in a corner, then I know it’s not a possibility. If I’m in public, my husband will walk or stand behind me when I have an attack, that way I know the only person behind me is him, and he would never let anyone hurt me. Basically, I just try to put myself in situations that allow me to be comfortable. I’ve developed many different strategies over the years to help in almost any situation.

For a little while, I thought my attacks were lessening. Some of my symptoms were not occurring as often and some of them not at all. However, I had new symptoms begin, but I thought that they were physical health problems. I would get chest pains that would last for quite a while and my left arm, hand, and fingers would become numb and tingly. I assumed it was a heart problem. I told my psychiatrist eventually, and he asked me to get checked out. I did a full cardio and neurological exam and everything came back fine, but the symptoms never went away. I opened my mind to the idea that my anxiety and panic attack symptoms could have changed. It didn’t seem right to me, but that’s when I noticed that some of my previous symptoms were gone. I no longer get dizzy, nauseous, or have hot flashes. Some of the symptoms that I’ve had for years, such as trouble breathing, trembling, and overwhelming terror still occur, except now they happen with the new symptoms of chest pains and a tingling arm. It took quite some time for me to determine any pattern with the new symptoms, but I do see now that they along with some of the old symptoms.

I didn’t think it was possible to have the types of symptoms I experience with my anxiety and panic attacks to change over time. At least now I am aware of my symptoms again. This provides me with the ability to get to a comfortable place when the symptoms first start, which in turn helps to reduce the severity of my attacks. It also helps so I don’t end up having attacks in public places, at least for the most part. I’m curious to find out if others have experienced this same type of change.

My Side of the Pole

Bipolar – Mental Health

Category: Bipolar