Clozapine Rechallenge – Day 16 Problems Arise

So apparently I have to go to the doctor today. It was either that or the ER, and luckily my PCP’s office had an opening. I was shocked. My psychiatrist was concerned about my most recent blood work, which took 3 times as long to complete as normal. My psychiatrist wants me to be checked for Clozapine-induced myocarditis. His reasons are because of my recent symptoms (which are now gone) such as shortness of breath, fatigue, chest and throat pressure, and eosinophilia (this is his concern from my blood work); as well as my previous reaction to Clozapine the first time I tried it, which was a high fever; and of course my genetics. When he refers to my genetics he is talking about my Ashkenazi genes.

I have an appointment in less than an hour and I’m ready to go. I’ve printed out my last 3 weeks worth of blood work and my psychiatrist’s notes. Hopefully nothing is really wrong; I’m sure it’s all fine. However, my stomach is killing me right now, probably from the anxiety.

Update: I went to the doctor and I’m not even sure that she really listened to me. I read the notes after the appointment was over, and half of them were wrong. It was extremely frustrating. Either way, they did more blood work and referred me to my cardiologist for an ultrasound. I asked if they could call to make the appointment, that way I could get in sooner, but they said they couldn’t do that. Then when I called the cardiologist myself, they said they don’t have my referral and can’t make the appointment until they have it. Now, I’m even more frustrated. My psychiatrist said I can wait on the ultrasound; I don’t have to go to the ER today, which is the first good news I’ve heard. I really am pretty sure everything is fine, I think it’s just a precaution. Although, the likelihood that I will be able to stay on this medication is decreasing. I’m doing everything I can to be able to continue taking the Clozapine, I’m just not sure if that’s enough.

Treatment-Resistant Bipolar Disorder

Treatment-resistant bipolar, also known as med-resistant, is something that most of us know too much about. Sadly, it’s extremely common. Being diagnosed as treatment-resistant generally depends on the number of medications a person has tried during the phase that individual is in. Many individuals have been through all sorts of different medications without much success. And then of course, if a person finally finds a medication that helps even a little, it comes with side effects that are too much to handle. I have been considered treatment-resistant by my doctors many times throughout my diagnosis. I have taken so many medications that I’ve lost track of them all. I’ve even lost track of the horrible side effects. I know that for me, Abilify sends me into a huge manic episode, Depakote causes me to lose my hair, and I gained 80 pounds on Risperdal. Those are just a couple examples of medications that I couldn’t handle.

Treatment-resistant doesn’t mean that there’s no answer; there are several individuals that are treatment-resistant that have gone into ‘remission’ for multiple years. I am one of those individuals. Somehow, I was able to live a regular life, work a full-time job, and have a full-time social life. I don’t know what happened or what changed, but after a little more than 2 years, something changed. I was still taking my medication and seeing my doctors, but it was as if I was a ticking time bomb. Then I exploded into such a massive manic phase that I had to leave my job and go live with family. I haven’t been stable since that time, but I do know it’s possible. Sometimes I wonder if I can ever get back to the place in life that I was at before. Honestly, I don’t know if it will or will not happen, but I haven’t given up.

There is always hope, even for those that are treatment-resistant. New treatments and medications are always coming out that could help. Sometimes, a certain combination of medications or treatments is the key to remission. It’s not easy to be patient, or willing to try new treatments, but you never know when one of these new methods will be the key to our health. I am always willing to research and usually try new treatments and medications. I am doing ECTs, electroconvulsive therapy, every month (I’m doing the maintenance treatments at this point), and I am doing a rechallenge of the Clozapine medication. The ECTs helped me get out of a major depressive episode. The Clozapine is supposed to help take away my suicidal ideations; it’s too soon to tell how effective it will be. My conclusion regarding treatment-resistant bipolar is that you never know when some new treatment or medication is going to help; don’t give up before the miracle happens.

Clozapine Rechallenge – Day 14

I’m still on the 100mg dose. My psychiatrist says that he’s keeping me at that dose because of the energy and fatigue that I’ve been experiencing. He doesn’t want to increase my dose until I can do some regular activities without having to nap for a couple hours afterwards. I’m very grateful that he’s not pushing the dosage increase. I’m supposed to start keeping track of this symptom using a number scale of 0 to 10, where 0 is none and 10 is the worst. This will be difficult to do, but I’ll try.

Today I woke up again with no side effects, and I even slept through the night. I won’t know how my energy and fatigue is until later in the day. I will rate yesterday’s energy and fatigue as a 5. It’s better than most days, but I’m still falling asleep if I sit down and rest for even a couple minutes.

I think I’m going to stop posting about my Clozapine rechallenge every day because it seems to be the same thing each day. If there are changes I will definitely post them, but I’m finally at 2 weeks, so I think I can cut back on these posts.

Clozapine Rechallenge – Day 13

I’m almost at the 2 week mark, which is where it all fell apart for me last time. However, this time, I’m doing so much better. I woke up this morning with no side effects; I’m feeling better and better every day. It’s amazing that I feel okay. No muscle soreness, no chest or throat pressure, no dizziness, no unsteadiness, and no fever. I am gaining weight, which can be a side effect of Clozapine. However, I was already gaining weight before I started it, so I don’t think that the weight gain has anything to do with the medication. I did get tired yesterday after running a couple errands and I ended up falling asleep on the couch for about 30 minutes total.

I stayed at 100mg again last night. I’m waiting for my blood work results to come in so I can get my next prescription. My psychiatrist wants me to have my blood pressure and pulse taken the next time I’m at the pharmacy. I will do my best to remember that when I’m there.

Clozapine Rechallenge – Day 11

Yesterday, I thought that it was going to be a great day because I felt pretty good when I woke up. However, I think I did too much. I ran some errands and went to visit a friend. When I got home, I crashed on the couch for about 2 hours, but I could only sleep about 10 minutes at a time. I didn’t expect to have this much exhaustion. I need to learn to only do a little at a time and allow myself to rest in between activities.

I stayed at the 100mg dose last night, but my psychiatrist also had me go off my Seroquel completely. I ended up sleeping pretty well, probably about 6 hours. I was worried I wouldn’t sleep because of my naps, but that wasn’t a problem. I did wake up with a lot of muscle soreness, but it was gone only an hour later. I was also unsteady on my feet, but that also went away quickly. I have no chest or throat pressure today. Right now, I feel pretty good. I have a lot to do today, and I’m going to do it one step at time, making sure I get to rest in between.

Clozapine Rechallenge – Day 10

Today, I feel the best that I have felt since I started taking this new medication. Last night I took 100mg again and my Seroquel is also down to 100mg. I woke up in the middle of the night, but only because the dog started barking continuously at some random loud noise, but he was doing his job. So I decided to sleep out on the couch in case it happened again, that way I could calm him down quicker. Other than waking up because of his barking, I slept through the night from about 2:00am until 8:00am. Every day, my sleep is improving. I was pretty unsteady on my feet in the middle of the night and when I first woke up, but that went away within 30 minutes of waking up. The pressure in my chest and throat has almost disappeared. My temperature is still doing well at 98.1. I haven’t been experiencing any other side effects today.

I am ecstatic that I’m doing so well. The first time I tried Clozapine last year, I had such a difficult time with it. My biggest issues were dizziness and sedation. I’m doing really well with those issues. I don’t want to get my hopes up, but I really think that it might work this time.

Clozapine Rechallenge – Day 9

Last night, I increased my Clozapine dose to 100mg and decreased my Seroquel dose to 100mg as instructed by my psychiatrist. I fell asleep last night around 2:00am and I was in and out until 8:30am. I probably got a total combination of 5 1/2 hours, which isn’t that bad. I woke up with sore muscles and I feel pretty tired, but it’s not as bad as it has previously been. I’m a bit unsteady on my feet, which is a new side effect for me. I still feel pressure in my throat, but it appears to be getting better. The chest pressure is there again, but very minor. And my temperature is 97.7. So I guess I do have a lot of side effects today, but I think they will go away as the day goes on, just like it has been happening every other day.

I have a busy day today that I’m looking forward to. My step-son, who is 24 years old, is coming over to visit. I love spending time with my step-kids. Then we’re going to dinner at my step-daughter’s house, she is 22 years old, which means I get to see my granddaughter again. We saw her this past Sunday, but I felt so weak from the medication that I was afraid to hold her; I didn’t want to drop her if my muscles gave out like they have a few other times. I’m going to continue to try to think positive even though it’s extremely difficult, at the very least, it can’t hurt.

Clozapine Rechallenge – Day 8

I slept approximately 4 hours, but I don’t feel too exhausted yet. I just couldn’t fall asleep for some reason. My psychiatrist had me cut my Seroquel in half since I slept almost 12 hours the day before. I was happy to do so; it just made it difficult to fall asleep, but the sleep I did get was good. Physically, the only problem I’m feeling is a sore throat. It’s more like a small lump in my throat on the right side that I feel as I breathe in. Other than that and being somewhat tired, I feel perfectly fine. I think that I’ll feel better as the day goes on, that’s how it usually goes. I have a lot to do today, hopefully my body can keep up with me.

I Can’t Even Fake Okay

I couldn’t even fake being okay today. I tried, I seriously gave it my all, but between the emotional aspect and the physical side due to medication side effects, I was pretty much a wreck. There was a get-together at my mother-in-law’s house just because, basically to see our granddaughter. Technically, she’s my husband’s granddaughter, but I feel like she is mine as well, and step-granddaughter just sounds weird. She is 6 months old and absolutely beautiful. I wasn’t feeling very well today, I had a lot of physical weakness. I was too nervous to hold the baby because of the weakness; I didn’t want her to get hurt. I have dropped several things I was supposed to be holding, such as dinner bowls, I didn’t want her to be added to that list. So I didn’t have as much time with her as I wanted, and that breaks my heart.

I went to the family get-together in a difficult emotional state to begin with. Earlier in the day, someone seemed upset, so I asked if everything was okay. The response I got was that I ask too many questions and it can be frustrating. The way I took it is that I talk too much; my memory is horrible causing me to ask too many questions, and that I’m overall annoying. I’m sure it wasn’t meant like that, but this is where the bipolar kicks in; my mind always goes to the extremes. So I spent the rest of the day trying not to talk, which is extremely hard for me. My memory is horrible due to ECT and I talk so much and ask a lot of questions because of the bipolar mixed episode that I’ve been in. I guess I don’t take negative feedback very well.

I think it bothered me so much because I don’t feel like I have control over myself, my memory, how much I talk, or what I say. I tried my best to fake feeling happy. I would have tolerated being able to fake feeling okay, but I could barely even do that. I used to think that I could always fake being okay, but today proved that I’m wrong. I don’t want to annoy this person, but if today bothered them because of how much I was talking or asking questions, then I think it must bother them every day. All I can think is that I must annoy this person all the time. Every time I have started to open my mouth that was thought that went through my mind. So I’ve done my best to be quiet, although I know that’s not the best answer. Hopefully tomorrow will be a better day.

Clozapine Rechallenge – Day 7

I fell asleep on the couch last night in the middle of doing something. I slept about 2 hours on the couch then woke up and we to bed. Then I slept 9 hours in bed, without waking up! I can’t believe I slept that much. I assume it’s because of the Clozapine; it does have a sedation side effect. I know that it’s not technically possible to catch up on missed sleep, but I really needed that.

I have some pressure in my chest and throat when I breathe deep, but that’s all. I don’t think it’s worse than yesterday. I tend to get tired easier than I normally would. Taking a shower and getting dressed yesterday wiped me out. I was going to go to a friend’s house, but I didn’t have the energy to do it. However, my temperature is still good at 97.0, so I think I’m doing well. Today, I go pick up my prescription for this coming week, since I can only get one week at a time.

My Side of the Pole

Bipolar – Mental Health

Category: Side Effects