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…

Zone Meal Plan

In the past 6 months, I have gained 32.5 pounds. Bipolar weight gain is terrible and extremely difficult to control. The weight gain began when I was in the midst of yet another depression, before I started taking Clozapine. Then, during the first couple weeks on Clozapine, I noticed that my hunger was never-ending and as a result, my weight was increasing even more. It was one thing when it was just 10 pounds, but now it’s more than 30. I have been through many depressive episodes, and I’ve gained weight during each of them. The largest amount of weight I gained during a depressive period was 80 pounds; that was when I was taking Risperdal. I will never take that medication again. During most of my other depressive episodes, I gained somewhere between 40 and 60 pounds. I always manage to lose the weight and get back in shape; I even keep the weight off, as long as I’m not in a major depression.

I decided, while I was on vacation, that I would start a new food plan when I returned. My husband said he wants to lose weight as well. It always helps to have another person in the house eating healthy and exercising. I have decided to go back on a zone (block) food plan from CrossFit, which I was given several years ago from my personal trainer at the time. It requires a lot of measuring and weighing. Breakfast, lunch, and dinner are all 3 block meals, and both of my snacks are 2 blocks each. After a couple of weeks, I will lower my snacks to 1 block each. I just want to give myself time to get used to eating on a schedule again. I think that starting with 2 block snacks will give me a bigger chance for success. If anyone is curious about the CrossFit Meal Plan, just follow this link, Crossfit Meal Plan PDF. The document explains what a zone meal plan is, what blocks are, it has a block chart showing what foods are worth, and example meal plans.

The meals are plenty for me to eat and they taste good; I’m not hungry. I still want to eat, but that’s just because I always want to eat. I eat compulsively; I overeat pretty much all the time. I wonder how long I’ll be able to follow the plan without overeating. Once I eat off my meal plan, the rest of the day is doomed. My mind doesn’t work right in so many ways, and food is one of those ways. I’m particularly proud of myself for choosing to start this meal plan. I really hope I stick with it and follow through. It’s a sign that my depression could be improving. I still feel depressed and have suicidal ideations, but even the smallest improvement can make a huge difference. My husband suggested that we work out together; he used to be my workout partner years ago, and we had a lot of fun. It sounds like a great idea; I just have to figure out how to manage my anxiety. Plus, I should probably only do one thing at a time; maybe I should wait until I’ve been on the new food plan for a couple of weeks before adding in a workout at the gym.

Managing Side Effects

Managing all of your medications is difficult to do when you take multiple medications. Individuals with bipolar disorder often have this problem. My meds have been changing quite a bit lately. In the past three weeks I added one medication and got off three. I’m off Seroquel, Cogentin, and Lunesta. I now take Lithium, Tegretol, Mirapex, Cytomel, Deplin, and Clozapine on a daily basis as my psych meds. I have Valium, Zofran, and Percocet that I can take as needed. I also have to take hormone replacement therapy because of my hysterectomy. It can be difficult to figure out which medication is causing which side effect, especially when so many things are changing at once.

I’ve been gaining weight for a while now; however, since I started the Clozapine, it has gotten much worse. I seem to be hungry more often. I’m definitely eating much more that I should be eating. I keep trying to stop, or even just slow down, but it doesn’t seem to work. My increased appetite didn’t start until I started Clozapine. Up until now, I didn’t think that this was a side effect; however, it makes more sense that it would be a side effect since I seem to have no control over it at all and because of the timing. This is something I should definitely mention to my psychiatrist, maybe there’s something he can do to help.

I’ve had medications cause all sorts of side effects. For example, Abilify made me go into a manic episode, I started losing my hair on Depakote, I gained 80 pounds on Risperdal, Seroquel causes dystonia, a high Lithium level causes me to shake uncontrollably, Mirapex makes me nauseous, and Lexapro made it harder for me to sleep. Those are just some of the side effects I’ve dealt with previously and still deal with. I started getting treated for bipolar disorder when I was 14 years old, which was 17 years ago. In the past 17 years, I’ve tried a lot of medications and dealt with a lot of bad side effects.

I’ve tried so many different medications that I can’t remember them all. It would probably be a good idea to make a list of all the medications I’ve taken and the side effects I experienced. Then I could just keep the list updated. The only problem is that I can’t remember every med and its corresponding side effect. I do have the notes from my previous psychiatrist that I saw for several years. I could try to go through his notes, but that could also be a very upsetting task. I’m not so sure I want to read what he wrote about me. I suppose I should at least give it a descent try. Having a list of all my past and current medications and corresponding side effects would be extremely helpful for the future.

Fatigue, Low Energy, and Weight Gain

The Clozapine that I started almost three weeks ago has been causing some problems for me. Most of the side effects went away; however, I’m still dealing with fatigue and low energy. The fatigue has greatly improved, but it is still there. During the first couple weeks of this medication, I could fall asleep in the middle of doing something. For example, I fell asleep while I was eating dinner once. Luckily, I only dropped my fork and not my bowl. But for the first couple weeks I was nervous to drive. I was afraid that I would fall asleep while driving, so I took some precautions such as bringing my dog in the car with me, calling someone on speakerphone, rolling down the window, or playing music that I can sing to. Some of these methods were thankfully effective.

I’m no longer dealing with that same intense fatigue that I had before. I’m still tired, but I don’t feel as if I have no control over whether or not I stay awake. I’m just tired; it’s been hard to get moving. I’m trying so hard to get today’s to-do list done, but I have such low energy that I’m not sure if I can get off the couch and even get dressed. I don’t even have many things to get done today, and I’m still having a hard time doing everything. I think the reason my psychiatrist had me increase my Clozapine dosage from 100 mg to 125 mg was because the fatigue and low energy side effect finally started to decrease. I’m so happy that things didn’t really change with the dosage increase. My fatigue and low energy hasn’t changed. I wish it would go away, but at least it’s getting better rather than getting worse.

One other problem I’m having recently is weight gain. I’m not sure if this is a side effect from the Clozapine or what else it could be from. The weight gain started before I got on the Clozapine, but I was gaining weight slowly at that point. Now, I seem to be gaining weight much quicker. I know one factor is because of my fatigue and low energy. I barely have the energy to get up, of course I don’t have the energy to workout like I was doing before. I really need to push myself harder. Maybe I will start with taking the dog on a walk tonight. I know for me, the more I do physically, the more energy I end up having. Sitting on the couch doing nothing makes my fatigue/energy and weight gain issues worse. Hopefully, I can create a new cycle that involves energy and weight loss.

Venting: Letting Out My Day

Normally, I just push through my days, no matter how bad they are; I find some way to make the time pass. I can usually hold it together; I can put a fake smile on and say what I need to in order to make others think I’m fine. Today, however; was not one of those days. My psychiatrist is worried and wanted me to be checked for Clozapine-induced myocarditis. I went to the doctor, and it was a waste of time. I checked her notes afterwards, and she only listened to about half of what I said. I also couldn’t get the ultrasound they referred me for; I wonder when I’ll actually have that appointment. My psychiatrist isn’t taking me off the Clozapine yet, but I’m just guessing that based on my luck, there’s going to be some reason to take me off it.

I’m overwhelmed by life. I don’t know how much more of this I can take, or how much I want to take. Aside from my mental health diagnoses, I’m also diagnosed with interstitial cystitis, a painful bladder disease. The treatments that I am using for it are called “installations”. Basically, every three weeks, I get catheterized so medicine can be put directly into my bladder. I’ve been doing this for over a year now. Most patients can go longer in between treatments, but since stress is a huge trigger for pain, it gets really bad every time I try to stretch out the treatments. However, because my stress has been greatly increased lately, so has my pain, so my doctor is having me do treatments every week for three weeks. The treatments help somewhat, but I still have a lot of pain and frequency problems.

Every four weeks, I also get to go to ECTs (electroconvulsive therapy treatment), and tomorrow is that lucky day. I hate doing it; I don’t want to go. Even though I admit that it was extremely helpful and was a big part of getting me out of a depressive episode I had last year, I still don’t want to continue with this treatment. It’s too much for my body; the past few times it tends to hurt more and more. My psychiatrist said since the treatments are further apart, my body isn’t used to them anymore. I also have a lot of memory loss from the treatments, but it has gotten better than when I first started. However, I don’t stop them because I’m too afraid of what will happen if I do.

A relationship of mine seems to be changing a little; it seems more strained than normal. This friend means a lot to me, to my entire life, and I guess the stress on the relationship is scaring me. I just thought I would say that, because I haven’t actually said it until now. I don’t let a lot of people in, so I don’t have a lot of friends; hopefully I’m not the one pushing this person away.

Well, I just needed to vent today. It was a rough one for me, but at least now it’s close to bedtime. It just seems that crap keeps happening; over, and over, and over again. I just wonder when it’s going to stop. I try to be positive all the time, whether it’s real or not, hoping that it will help, because I feel like that’s what I’m supposed to do. However, someone today told me that I don’t always have to put a face on, and I really appreciated that. So I decided to be 100% honest and admit that today, things suck. I have been extremely stressed out, very frustrated, overwhelmed, and I still made it. I even was able to clean my entire house, that’s how I like to get out my frustration. I’m unsure if tomorrow will be any better, but at least I’ll start with a clean house.

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 12

My dose stayed at 100mg again last night. My sleep keeps improving. Last night, I fell asleep easily and slept about 6 hours without waking up. When I woke up, I was tired, but had no other symptoms. I guess my body is getting used to the medication.

Yesterday, after taking a showing and getting dressed, I had to rest for couple hours before running errands. I seem to get tired very easily. After resting, I ran some simple errands. I came home from that and ended up crashing on the couch. I napped for about two hours; however, I could only sleep 5 or 10 minutes at a time. It appears that I get exhausted very easily after any physical exertion.

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.

My Side of the Pole

Bipolar – Mental Health

Tag: Side Effects