Standing By My Decision – I Actually Did It!

I was very nervous about my psych appointment yesterday; I was so nervous that I even had an anxiety attack. I’m not used to telling anyone what I want, especially when it’s different from others want. Standing up for my own desires is nerve-wracking for me. I prepared for my psych appointment yesterday by writing down exactly what I wanted to say. I told my psychiatrist that I wanted to stop ECT because it has become too hard on my body and my mind. I’ve been doing ECT for close to a year and a half, and I just can’t take it anymore. I explained my reasons and to my surprise, he was okay with my choice. He explained that he respects my choice; I couldn’t ask for more than that. I’m very happy with the outcome of that appointment.

He gave me several options about what we could do moving forward. He told me I probably wouldn’t like a couple of the options, but he was going to mention them anyway. I’m glad he did mention them (without any pressure). It was nice to see all of my options at once, even though I didn’t like most of them. Together, we decided to slowly increase my Clozapine up to 400mg a night. We will increase the dose by 25mg each week until we reach our target goal of 400mg. We are increasing slowly to hopefully avoid some negative side effects such as dizziness, fevers, and drowsiness. It will take two months to reach our goal. I will see him in three months. This gives me time to get to the target dose and then allow my body to adjust to the dose for a while. I’m really hoping that this change will help. The Clozapine has helped quite a bit so far, I have a feeling that it will continue to help.

My husband pointed out to me that this is the first time that I made my own decision regarding my mental health, and stuck by it. He was proud of me. To be honest, I’m proud of myself. I know it sounds a little ridiculous to be so happy about this decision, but it’s a huge step for me.

Do You Have Negative Thoughts Like I Do?

I always do everything I’m told, and I think it’s catching up with me. I don’t want to cause any problems, but I feel like I need a vacation from my life, from myself, from my health. Just out of curiosity, I’m wondering how many people have had the same thoughts as the following:

I’m always compliant with my medications and my treatments. Sometimes I just want to say screw it all and not take my meds. I wonder how much they’re really helping anyway. What’s the point of taking all these meds without knowing that they are definitely working?
I’m an insomniac. The Clozapine has been helping me sleep for the most part lately, but I still wake up several times throughout the night. Why do I keep forcing myself to fall asleep? For some reason, I’m always hungry when I wake up. Maybe I should try to see if I get tired on my own. I’m an insomniac; I have problems sleeping, not getting tired.
Sometimes, I’m get tired of doing the reasonable or rational thing. On occasion, I just want to do whatever I feel like doing without people saying it’s because of my mental health.

These are just a few of the things that have been going on in my mind lately. I think I’m just a bit frustrated with everything, and I’m wondering if other people have similar thoughts as I do. If others do have these thinking issues, what do you do to get through them?

Psychiatry Appointment

Late tomorrow afternoon, I have an appointment with my psychiatrist. I’m really nervous about this appointment. He is going to go over my Clozapine blood level with me and change my dose. I’ not really worried about that, but I have just decided that I don’t want to do ECT anymore. I’ve been thinking about this for a while now, but I finally made my decision (I think). Right now I’m going every four weeks. So at the very least, I could just start by taking an extra month off and seeing how that goes. If it’s a disaster, then I can think about going back on it.

I wrote down on paper what I want to say to him because I don’t normally stand up for my opinions.I don’t like any type of disagreements. Since I wrote it down, then I know I will be able to say exactly what I want to say. I’m going to tell him, ‘I am no longer willing to do ETC treatments. The stress on my body, the memory loss, and the loss of words in conversations is too much for me. It has been this way for a while. I tried putting it off, but I can’t wait any longer. I’m not willing to do the Ketamine treatments at this time.’ Hopefully I can stick by what I say. There’s a better chance of that happening since I wrote down what to say.’ I’ll let you all know how it goes.

Managing My Health

Sometimes I feel like all I do is go to doctor appointments, pick up my prescriptions, and manage my prescription refills. This week, I have two doctor appointments and another appointment for blood work. That’s about how many appointments I have each week. I feel pathetic. Most of my life is spent attempting to manage my health, especially my mental health.

My current meds are: Lithium 450mg twice a day, Tegretol 200mg one in the am and two at night, Cytomel 37.5mcg in the am, Clozapine 200mg at night, Deplin 15mg at night, Mirapex 1mg three times a day, Inositol 500mg in the am, Depo Estradiol injection weekly, Depo Testosterone injection monthly, Valium 10mg twice daily as needed, Percocet 10mg as needed up to four times a day, and Zofran 4mg once daily as needed. It’s difficult to manage this many medications, but I do it pretty well. I’ve gotten used to it; I’ve developed a system so I get all my meds filled on time without missing a day.

I have an appointment with my psychiatrist on Thursday to discuss my Clozapine dosage. I’ll probably end up with more than one medication change. I’m hoping to get off the Deplin. It’s really expensive and it doesn’t appear to be making a difference. We’ll see what happens on Thursday.

Further Frustration with My Pharmacy

I’m beyond frustrated at this point. I’m so annoyed and pissed off. I’m still having problems refilling my Clozapine. Yesterday, I had to call the pharmacy 6 times. I finally found out that the problem with my prescription is because of the national database. I don’t know what problem the national Clozapine database has found. My blood work is better than it used to be, it’s finally back to normal. My doctor waited a few extra days to write my prescription because he was waiting for my Clozapine level blood test to come back. That test took a few extra days. I usually get my script on Sundays or Mondays, and this time he didn’t write my script until Thursday. Maybe that’s the problem.

I have an appointment to go do my weekly blood work today. Part of me is wondering if I should even get it done since my script from last week hasn’t been filled. I’m out of Clozapine. If I can’t get my script to be filled today, then I have no Clozapine to take. I wonder if there will be bad side effects or withdrawals. I’ve forgotten to take the medication by accident once or twice. When that happens, I usually end up feeling sick to my stomach, more like a stomach pain. I have no clue what to do. I keep calling the pharmacy, but I’m getting nowhere.

Clozapine Refill Frustrations

I started my Clozapine rechallenge on April 3rd; I have now been taking it for close to 8 weeks. My doses have increased slowing over that time. I’ve had some side effects, but nothing that can’t be managed or dealt with. Some of the side effects have gone away over time and others I’ve learned to deal with to the best of my ability.

I just had my Clozapine level taken and the results finally came back yesterday. My level came back at 80, which is very low. I’m assuming that my doctor is going to be increasing my dose, but I’m not sure. I don’t really know where he wants my Clozapine level. A low level is between 50 to 150 ng/mL, 200 to 300 ng/mL is a medium level, and 350 to 450 ng/mL is a high level. I’m pretty sure that the therapeutic level begins 100, which I haven’t reached yet.

Every week I seem to have problems with my blood work and filling my prescription. People at the pharmacy tend to lose track of my blood test results, which they need in order to fill my prescription. I have finally learned that if and when the pharmacy says they haven’t received my weekly blood work, I just need to tell them to look in my file. I thought getting my script filled would be easier now that I’ve figured out that part. However, this week’s prescription has been difficult for another reason. First, my doctor wanted to wait for the Clozapine level results so he knew how much to prescribe. I normally get my script filled on a Sunday or Monday. It’s now Thursday, so I can’t last much longer without a refill. My doctor has called the prescription in twice to the pharmacy. He said that he was on hold for 10 minutes just to leave a message. I’ve called the pharmacy 3 times today regarding this script, and it still isn’t filled.

I don’t know why it’s so difficult to get this prescription. It seems to add a great deal of anxiety to my life every week. I’m actually taking Valium just to deal with this situation. I wonder if it does more good than harm.

Vivid Dreams

Insomnia and other sleeping disorders are common among patients with bipolar disorder. I personally have suffered from insomnia. I have taken Ambien, Lunesta, Seroquel, Trazodone, and other medications over the years to get me to sleep. Right now, the Clozapine I take gets me to sleep and keeps me asleep. It is also common for individuals with bipolar disorder to have very vivid dreams, especially nightmares.

Patients diagnosed with bipolar disorder often have strange and scary dreams. Many of these patients have anxiety in their dreams. Their type of dreams may also change depending on their status, whether they are manic or depressed. My husband tells me that I am very active at night. I tend to talk a lot in my sleep and I also move around a lot. I’m not sure, but I think that this is related to the type of dream I am having.

Nightmares tend to occur more often for those diagnosed with bipolar disorder. Personally, I tend to have very vivid and scary dreams, but if I don’t talk or write about them right away, I will easily forget the dreams. For the past couple of weeks, my dreams have been extremely vivid. Everything seems so real. The dreams I’m having are mostly everyday situations. I’ve actually had a few times when I’ve confused my dreams with real life. The dreams are common occurrences such as disagreements with my husband or family members, difficulties with doctor appointments for my physical health, or problems with pets.

One of the things that suck is that I have been feeling physical pain in my dreams, specifically bladder pain like I feel from my bladder disorder. I wish I could get rid of these dreams. Isn’t it enough that I have to deal with this crap during the day? Why do I have to deal with it again in my dreams? I had a conversation with my husband in one of my dreams. I ended up using that conversation from my dreams in a real life situation. My husband had no clue what I was talking about. It took me a while to realize that what I was talking about actually came from a dream.

I think I should start keeping track of my dreams. Maybe I’ll keep a journal next to my bed. This way I can write down what my dream was about as soon as I wake up. If I wait too long, then I completely forget what it was about. I’m interested to find out how my dreams change based on what episode I’m in.

Waiting Is The Hardest Thing To Do

Right now, I’m waiting, and I’ve been waiting for days. I’m waiting for the results to my Clozapine level blood work. The results to this test will tell my doctor whether or not he wants to increase the dosage of my Clozapine. I’m currently at 200 mg every night. I did the blood work on Friday. My normal weekly blood work was completed on Friday, but the Clozapine level takes longer to come back. I just don’t know how long; I even tried to figure out how long it would take by researching it online, but I came up empty-handed. I told my psychiatrist that I’m in a depression. I informed him that I’m sleeping too much, I’m overeating, I feel worthless and empty, and I’m easily irritable. He told me to hang in there; we are waiting for the results of the Clozapine level. Once we have the results, then we can figure out our next step.

So now I’m just waiting. I’m waiting for my blood test results, I’m waiting to find out what change my psychiatrist wants to make, and I’m waiting to start feeling better. When you’re waiting for something, every moment seems to drag on and on. I’m just trying to get through this, one moment at a time, but how much longer do I have to wait? Even if my psychiatrist decides to add a new anti-depressant, we all know that it takes 4 to 6 weeks for the medication to start working, if it’s going to work at all. So that’s more waiting. No one should have to wait this long to feel better.

I’m compliant with anything I’m told to do by my doctors. However, I am getting sick and tired of it all. I wouldn’t mind the waiting, if I knew that there were going to be positive results. I also wouldn’t mind the waiting if I knew that the positive results that I was going to get would be more than just temporary. We all know that no medication to treat bipolar disorder is permanent. Every time we try a medication, our bodies react differently; we almost never react the same way twice. How a medication works varies depending on our current mental state, the medications we’re currently taking, and any treatments we’re currently undergoing.

I just wish there was an easy answer to treating bipolar depression and mania. There should be an answer, an easy way to help us, where we don’t have to spend most of our time waiting. My bipolar disorder is very gray, nothing is absolute, and everything is questionable. I wish my bipolar disorder was more black and white, I wish it had easier, faster, and more accurate answers.

It’s All Too Much

I’ve completed a few things so far today that needed to get done. I went and got my weekly blood work, this week it included a Clozapine level. I also emailed my psychiatrist to let him know how I’m doing. I let him know that I think my weakness and exhaustion is from ECT, not from Clozapine. For every step I take, it feels like I’m taking a thousand steps. Every single task I work on, even when I don’t complete them, requires a major effort. And it seems to be never-ending. Once I finish one task, there are three new ones to finish. It keeps increasing. Can’t people tell I’m not up for this right now? I know that I normally fake being okay, but I’m not even trying to fake anything right now. To fake being okay requires energy, and that is not something that I have at this time. All I can do is be myself; tired, confused, and distraught.

My husband has decided to look for a new car. Actually, my mother-in-law wants to get my husband a new car and give his current car to his brother. His immediate family is pretty much computer illiterate. His brother once told me it was amazing how I was going back and forth between two windows. So any time they want to do something, they always ask me. “Why don’t you ask Jodi? She could easily do that for you.” My only problem with that is I struggle to say no to anyone. I especially struggle to say no when I’m asked in front of a group of people. This time, it felt as if it was assumed that I would do whatever I was told to do or whatever was “asked” of me. It’s hard enough to get something done when you have one person telling you what they want, but when the decision is between two different people who aren’t in the same room, it becomes a major challenge. It is not something I want to get myself in the middle of.

Maybe I would feel a little better if I could get a few more things done that need to be done for me. Tasks such as cleaning the house would help me feel good. I even break that task down into smaller tasks so I feel productive as I’m cleaning. I already cleaned the kitchen and the bathrooms a couple of days ago. All that’s left is to dust, vacuum, and mop. I wish I could get rid of my depression. It’s making life so difficult; every little task is a massive job. I just don’t want to do it anymore.

Clozapine Side Effects

Today marks 6 weeks that I have been on Clozapine. My psychiatrist has been increasing the dose slowly. I have only been at my current dose of 200 mg a night for 2 weeks. This is the dose that my psychiatrist wants me on until we get the results of my Clozapine level from this upcoming blood work. Things were going just fine, until the past several days. There’s always some sort of problem with me and medications, it can never simply work.

One thing I noticed is that I’m starting to slur my words and sometimes I just have a hard time saying certain words, usually words that have several ‘s’ sounds strung together in a row. It doesn’t happen often, but when it does, it’s very frustrating. I feel like a little kid again with the speech impediment I had until I reached 3rd grade. I first noticed it happening about 3 or 4 days after increasing my dose to 200 mg. My initial thought was that it could be due to the Valium or Percocet. I paid close attention making sure that the slurred speech was still occurring even when I had not taken any Valium or Percocet.

Over the past few days, I noticed another side effect, drooling. It only happens when I’m sleeping, but it gets so bad that my pillow is soaked. Sorry, I know it’s gross, but it’s been happening for about 4 days now. I tend to wake up in the middle of the night and then I have nowhere to lay my head down when I try to go back to sleep. I did some research, and it turns out that drooling is a regular side effect of Clozapine. The slurred speech is also a known side effect, but it’s not very common. I wish I could fix the fact that I tend to get so many side effects from medications. I wonder if it’s because of my Ashkenazi genes.

I told my psychiatrist about these side effects. He said that we can discuss options regarding the drooling the next time I see him, which is on Wednesday. That sounds promising, at least there are options. However, he said that if the slurred speech continues or increases, then I would most likely have to reduce or get off the Clozapine. I’m not happy with that option. There’s nothing I can do about it now. If I do end up having to get off the Clozapine, then I’m sure there is a very good reason for it. Now, I just wait and see…

My Side of the Pole

Bipolar – Mental Health

Category: Clozapine