Clozapine Rechallenge – Day 2

Last night I took 50mg, as instructed. I had some problems falling asleep because I couldn’t breathe; I actually had to go get my inhaler and sit upright for about an hour. It’s a sign of an anxiety attack, except for the fact that I didn’t feel much anxiety. However, once I was finally able to fall asleep, I slept! I actually slept about 6 or 7 hours, and the best part is that I slept straight through the night! That almost never happens to me, I’m so excited.

Once I woke up, I noticed that I was a bit unsteady, but only if I bent over or was too active. So I’ve asked for help with things, and my husband was more than happy to assist me. I also noticed that I’m slurring some of my words, and I did wake up with a sore throat. The longer I’m awake, the better I feel. Both of these things are side effects of Clozapine. I will inform my psychiatrist, but I do not want to quit this medication so quickly. I’m prepared to tough it out.

Family Get-Togethers

My family (in-laws) likes to get together a lot, at least for every birthday and holiday. Honestly, I like that. Family is extremely important to me and they are always supportive. Only recently have I really started opening up about the depths of what’s going on with me, and I was pleasantly surprised as to how understanding and encouraging they were. They already knew about my diagnoses, but not the details about how I feel in the moment. Being more honest about my mental health state has made me feel more comfortable with them; I don’t feel like there’s anything I need to hold back anymore.

One thing I really struggle with is saying ‘No’, to anyone about anything. I don’t know why, but I would usually rather have an anxiety or panic attack than tell someone I can’t do something. I told my mother-in-law, who I am getting closer and closer with (and I love that), and she was extremely understanding. I even feel as if I could tell her ‘No’ and I wouldn’t freak out about it. It’s amazing what a little bit of honestly and openness will do.

Yesterday, I received an invitation from my husband’s aunt for a get-together that will happen tomorrow. I really want to go to this; I get along well with everyone. I’m going to call today and say I can go, but I’m a bit nervous because of the new medicine I started. I’m increasing my dose by 25mg every night; what happens if I can’t physically go at the last minute? I don’t like being the person that cancels last minute, but I can’t say how I will be feeling tomorrow evening because of this medication. It’s a different reason than I normally have for being nervous about get-togethers. Maybe I should just be completely honest and tell them everything I just wrote. Honesty is the best policy, even when it’s scary.

My husband’s family, which I consider to be my family instead of just my in-laws, is extremely important to me. Almost all of my side of the family lives in the North East, with a few people scattered around the US. However, I am the only one from my side of the family that lives in Arizona. All of my husband’s family lives near; I love that we have the ability to see them almost any time we want.

Problems Sleeping, Still

My sleep has been screwed up for the past 2 weeks. Some nights I only sleep 3 – 5 hours and others its 5 – 6 hours if I’m lucky. Only 1 night did I sleep less than 2 hours. I try to nap during the day, but it never works. I seem to be getting more done at night when I’m unable to sleep than I do during the day. I like things to be organized. Anything that can be organized alphabetically, is, including my filing cabinets, all my spices, and the apps on my phone. I also organize my spices by size and brand. Maybe that’s a bit excessive, but it makes me feel good to be organized. Being productive is something that helps me feel better, which is why I keep trying to get things done. If I can’t sleep, I think it’s better to be productive than just sit on the couch watching TV or waiting for the morning to come.

The only issue is that I feel that I need to stay quiet so I don’t wake my husband. Luckily he has ear plugs that he wears, but I’m still cautious. Just because I can’t sleep doesn’t mean he shouldn’t sleep either. I haven’t cleaned my house in 6 days. So if I can’t sleep again tonight, then I know what I’ll be doing. I’ll dust every surface, clean the kitchen, clean the bathrooms, and anything else I can find to do, I’ll just do it as quietly as possible.

I start a new medication tonight, the Clozapine that I’ve been talking about, and I’m so nervous. I keep pretending I’m okay, but I’m not, I’m a wreck inside. I’m trying to think of the positives. The first thing that comes to my mind is that one side effect is drowsiness. Normally that would be a negative aspect, but since I’m not sleeping much, the drowsiness side effect could actually work in my favor. If I end up being tired and actually sleeping, I will just have to clean the house tomorrow.

My psychiatrist is fantastic. He asked me to check in with him every day to make sure that there are no problems. It’s nice to know that he will be available every day just in case I have an issue. It’s time to take my meds; I’m anxious, but I’m ready to find out how well it goes.

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.

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.

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.

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.

Planning Ahead Helps Reduce Stress

I have a difficult time doing anything that is not in my normal schedule. Even if it’s as simple as going to a new store to go shopping, meeting someone at a restaurant I’ve never been to before, or going to a get together at a family member’s or friend’s house. I do my best to prepare myself for any situation that I will be getting myself into. Basically, all I try to do is to find out as much information as I can about the upcoming event and come up with a plan for what I can do if I have an anxiety/panic attack, if I start crying, or if I become uncomfortable in any way. Planning helps me feel safer and reduces stress when I walk into these unknown situations, but it doesn’t always solve every problem.

For example, today I went to two different family member’s houses. The first house was somewhere I had never been before. I started planning by trying to figure out who was going to be there, my husband helped me with this. Then, my mother helped me by reminding me that I can handle this. Also, if I became too uncomfortable or scared, I could always walk outside and call someone to talk me through it. Additionally, I planned on taking a Valium on my way over there to help keep me feeling relaxed and prevent an anxiety/panic attack. Furthermore, I planned on sitting by someone I’m very comfortable with and having my husband sit on the other side of me, that way no one could catch me off guard.

Nothing every goes perfectly as planned, but things almost always go better when you have a plan rather than going in unprepared. When I arrived at the first house today, I was surprised to see that there were 5 people there I didn’t know, and I had no clue these people would be there. I freaked out at first, my heart started to race, but at least I had taken a Valium, otherwise my reaction would have been much worse and more noticeable. Then I thought about my plan and I sat myself down next to a family member that I find enjoyable and is also understanding of my bipolar disorder. This kept me calm. I used these techniques help me through the day, and to my surprise, it was easier than I thought it would be. I’m sure that the people I didn’t know thought I was different because I avoided them at all costs, but oh well; all I really cared about was making it through the day without freaking out.

The second house I went to was fine; I’m already comfortable with the people there, and everything went well. I’m proud of myself for making it through the day, especially since things didn’t go as I thought they would. Planning ahead doesn’t solve every situation, but it does make it a whole lot easier. It also helps a great deal to be with someone that knows your situation and is there to support you; for me, that’s almost always my husband. He knows how to make me feel safe and comfortable. I’m extremely grateful for his love and support, as well as the love and support from my mother and other family members.

IV Ketamine vs Clozaril

I know I need another form of treatment, and my psychiatrist is respectful enough to give me a choice. However, as stated in my last post, making any decision is extremely difficult. This decision feels as if it’s nearly impossible.

At first thought, IV Ketamine terrifies me. I used to get high off of Ketamine, I’m now 11 years sober, but the possibility of dissociation is what scares me the most, it brings back traumatic memories which trigger my PTSD. I’ve already tried Clozaril once and ended up with a fever around 2 weeks. I had no other symptoms and my weekly blood work came back completely normal. Even though Clozaril is a very risky medication, it doesn’t scare me like the IV Ketamine does.

The information I found out about Clozaril after research and talking to my psychiatrist:

Giving Lithium with Clozaril can help prevent the low white blood cell count with a 94.5% success rate. I am already on Lithium, so this is beneficial to me.
The risks of this drug are increased for me because I’m Ashkenazi, which is Eastern European Jewish heritage.
Only 1-2% of patients that take Clozaril develop agranulocytosis, a blood disease that increases the susceptibility to infection. Only 1-5% of patients may have seizures, but that can be avoided by titrating the dose up slowly.
Clozaril is 60% effective for patients.
I would have to do weekly blood tests for 6 months, then do blood tests every 2 weeks for 6 months. I could then go to blood tests every 4 weeks if there were no problems. Blood tests are required to get medication.
From what I understand, my worst case scenario is: I start to get a fever or other symptoms, I call my psychiatrist, he would send me to the hospital where I would get blood work done and they would make sure my fever goes down. Then I stop the medication again and have to try something else. This is what happened last time.

The information I found out about IV Ketamine after research and talking to my psychiatrist:

The IV Ketamine trial consists of the first 2 treatments, which are done within 1 week. I would generally start to see some type of result within 24 hours. If I don’t see results after the first 2 treatments it would be considered ineffective for me.
This treatment is very effective, and patients don’t have to wait 6 weeks for medication to start working.
I would be monitored at all times by a doctor. If I had a panic attack during the infusion, he/she would be able to treat me.
I can take something for my anxiety before the treatment to help me stay calm.
Some patients experience dissociation during the infusion. Dissociation can cause a lack of control mentally and/or physically. This is the part that is a trigger for me. Just writing about it now is causing a massive anxiety attack.
Maintenance treatments are done anywhere from every 3 weeks to every 3 months. Every patient is different.

Now that I have all of this research, I should be able to make a decision, but my indecisiveness is always there. I’m leaning more towards the Clozaril rechallenge. I understand the risks and as long as I immediately tell my psychiatrist about any symptom I have, I should be okay. I know I could get a fever again and it won’t work, but then my options will be narrowed down for me. I also have several reasons not to do the IV Ketamine. First of all, it terrifies me. I’m having an anxiety attack right now just thinking about it, what will happen when it’s time for the actual treatment? It is very expensive and not covered by insurance. The first 2 treatments are $600 each, and every maintenance treatment is $400. The IV Ketamine is also new to me, and new things scare me. I’ve done the Clozaril before so I know what to be on the lookout for.

The only reason I’m considering either is because the psychiatric benefits outweigh the medical risks. Writing this post has helped me realize how scared I am of the IV Ketamine. I don’t think I could handle the treatment. I think my best option is to rechallenge the Clozaril.

My Side of the Pole

Bipolar – Mental Health

Category: Anxiety and Panic