Category: Clozaril

Clozapine Rechallenge – Day 4

Clozapine Rechallenge – Day 4

Last night I increased my dose to 75mg, per the request of my psychiatrist. I slept a couple hours in the bedroom before coming out to the couch; at that point, I was in and out for the rest of the night. At least I’m getting 6 or 7 hours of sleep each night, even if I can’t sleep through the night, it’s better than nothing.

The only side effect that I seem to have today is that my whole body is sore. Every muscle hurts, as if I just did a major workout a couple days ago, but I didn’t. It seems that this rechallenge is going pretty well. I will schedule an appointment with the lab to get my blood work done again tomorrow.

Clozapine Rechallenge – Day 3

Clozapine Rechallenge – Day 3

I told my psychiatrist yesterday about the side effects I experienced. Even though they were getting better as the day went on, he decided that he did not want me to up my dose for day three. I ended up getting dizzy and weak feeling yesterday, but I think a lot of that had to do with the combination of the medication and anxiety; I went to a birthday party for a family member and felt a bit overwhelmed. Because of the side effects I had, I took 50mg again last night as instructed.

I had some trouble sleeping, but ended up getting a total of 6 or 7 hours. I wish I could sleep straight through the night, but I guess that’s not how it is for me. When I woke up for the last time this morning, I felt normal. I don’t notice any side effects or problems at all. I can’t wait to tell my psychiatrist. This is great progress and now I’m excited to continue the Clozapine instead of being nervous. My body is adjusting, it’s a good sign.

Explaining Mental Illness to Others

Explaining Mental Illness to Others

I get a lot of comments from people who don’t know that I’m diagnosed with bipolar and PTSD, and also from those that know and simply don’t understand. One family friend simply doesn’t understand. If we are out together in a group and my husband walks away for a moment, I tend to get anxious. I start to look around; making sure that nothing frightening is going to happen while my husband stepped away momentarily. His friend starts to tell me, “Don’t be anxious. Don’t worry, nothing bad will happen. Just relax.” I try to explain to him a little about anxiety and mental health, but he doesn’t get it. I feel invalidated and ridiculous by his comments; I end up feeling as if my emotional reactions are foolish and irrational. I’m not sure if I should bother explaining it to him again. He hasn’t understood it the first 5 times, why would he get it the next time? Even though I often feel uncomfortable in these situations, I accept this guy as a part of my life. I have hope that it will get better over time.

Not everyone is like that individual. I was at a family gathering yesterday for someone’s birthday. It was very obvious that I wasn’t feeling well. I explained that it was due to a new medication. Everyone that I talked to was understanding; some people asked a few extremely personal questions, but not one person was rude or dismissive. There is another person in this family that also struggles with bipolar disorder; they are accepting of her, but they don’t seem to understand much about the illness. Various people asked me questions such as, “Why aren’t you feeling well? How long have you been on this medication? What is this med supposed to treat? Why would you be willing to take something so risky or difficult? Don’t you think you can just get better with time?” Some of these questions were legitimate, some were a bit odd. I answered everything I could, and then I decided to provide some educational information.

I talked about NAMI (National Alliance on Mental Illness) and how it can help those diagnosed with mental illness and their families and loved ones. I talked about the NAMI Family to Family classes that are provided all over the country. I explained that my mother and sister took these classes shortly after I was diagnosed and how helpful it was for them. I described how it helped my mom and sister understand how my brain worked, what they should and should not do depending on the episode, and even how to take care of themselves. The couple people I talked to about this seemed quite responsive and even intrigued. It was really nice to have people seriously interested in what I had to say instead of ignoring me, even when I’m just answering their questions.

In my experience, family has always been supportive and caring; both my family and my husband’s family really seem to care about me and my wellbeing. No one always expresses themselves properly, but I do know that what they do always comes from love. Of course there will be times when they say the wrong thing, but that happens to everybody. In those situations, I need to remember that they didn’t mean anything by it, and that it is okay for me to stand up for myself by saying that my feelings are hurt.

 

Clozapine Rechallenge – Day 2

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.

Clozapine Rechallenge – Day 1

Clozapine Rechallenge – Day 1

Last night was my first dose for the Clozapine rechallenge. I took 25mg at bedtime (10:00pm), and I fell asleep quickly, probably within about 45 minutes. That’s a huge change for me, especially since I’ve been falling asleep anywhere between 2:00am and 5:00am for the past week or two. The pharmacist told me to make sure I take this medication close to the same time every night.

Falling asleep quickly is awesome, but the rest of the night was fairly awful. I woke up after about 1 hour. Then for the rest of the night, I slept approximately 20 minutes for every hour. So I spent the night falling asleep, then waking up, and then doing that all over again many times. I came out to the couch because laying in bed, feeling exhausted, but not able to sleep, is extremely frustrating. Waking up was very difficult; my eyes had a hard time staying open, but I think I’m fully awake now. I slept a total of about 3 1/2 hours, that’s not that bad for me.

The best part is that I have no dizziness, at least not yet. The last time I tried this medication, I had a lot of problems with dizziness. I think that it’s a good sign that I don’t have any dizziness issues at this time. I’m really hoping that my body will adjust to the medication better than it did last time. In my opinion, I feel like I’m off to a good start. My psychiatrist is increasing the dose slower this time than he did before, and I’m grateful for that.

Problems Sleeping, Still

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

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

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.

 

I Choose a Clozaril Rechallenge

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.