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.

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.

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

Tag: Clozaril