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…

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.

Challenges Show Us What We’re Made Of

I’ve heard it said many times before, ‘Challenges aren’t there to stop us; they’re there to show us what we’re made of.’ If that’s true, then I’m made of medications. It’s my daily medications and my as needed meds (such as Valium) that allow me to face my challenges. Okay, maybe I’m being a little dramatic, but I honestly don’t think I would be able to do anything without my meds. I can do a lot without Valium; it’s just there in case I need it. While on vacation, I have needed it more, but there have been times this past week when I did things without taking any. I’m going out with my mom and grandma this afternoon for mother’s day and I’m going to do it without taking any Valium, or at least that’s the plan. I can do it, I can do it. I tell myself over and over and eventually it helps. Everyone faces challenges on a daily basis, big and small. Even if I have to take daily medications and some other medications as needed to get through these challenges, at least I’m getting through them. At least I give it a try.

One challenge I’m dealing with right now is getting my weekly blood test results over to the pharmacy so I can get my prescription for Clozapine. I had my blood drawn at the local hospital and then I was told that they could not send my results to the pharmacy even though my psychiatrist requested it on the lab order, he gave them the pharmacy fax number and everything. All labs are closed on Sundays where I am, even the one in the hospital. So tomorrow morning, I have to call the hospital lab and Quest labs and explain the entire situation to them. Hopefully they will have my results and will fax it over to my pharmacy. If not, then I’m going to have to go to the hospital to talk to someone in person. The hospital is 40 minutes away. If that doesn’t work, then I don’t know what I’m going to do, but I will find a way to keep trying. There has to be a solution.

This is a huge challenge for me. I’m extremely uncomfortable talking to people. My anxiety increases, I start rocking back and forth, I lose my words, my heart rate increases, and I start shaking. Maybe no one else notices it, but I feel exposed. I feel as if everyone in the world can see that I can’t even ask people questions. I’m getting a little better at it, but it’s still terrifying to me. Sometimes, I write down my questions in case I lose my focus due to the anxiety. That way, no matter what, I can get my questions answered. I need to at least try to do it. The times that I try and it works out, I feel so proud of myself. It’s a huge accomplishment. I do my best not to let my challenges stop me; I try to find my way around them, one thing at a time.

My Lab Results Finally Improved

For the past several weeks, my blood work results have been getting worse. My white blood cell (WBC) count, eosinophils, and absolute eosinophil have all been high and increasing every week. My WBC should be somewhere between 4 and 11 k/mm3, instead, it got as high as 13.6 k/mm3. My eosinophils should be between 0 and 7%, but it maxed out at 26%. My absolute eosinophil should be in the range of 0 and 0.7 k/uL, but my got to be as high as 2.9 k/uL.

I don’t really know what these levels mean, except that it makes it very difficult for me to get my Clozapine prescription filled every week. My psychiatrist and my pharmacist get copies of my blood work results every week, and every week my pharmacist questions whether or not to fill my prescription. It becomes a huge deal and I usually have to have my psychiatrist call my pharmacy to tell them it is okay to fill my prescription. It’s never an easy task, and starting next month, it’s about to get even more difficult. My pharmacist told me there are new protocols being put in place starting in May. If blood work results are off, like they have been every week, then they have to be sent to the central Clozapine database. The database will decide if the prescription can be filled instead of the pharmacists and doctors making the decision.

Luckily, I think all of these problems might be coming to an end for me, hopefully. For the first time in a month, my levels are finally going back to normal. It might take a little while to completely return to normal, but at least it’s headed in the right direction. My WBC is within normal limits at 9.7 k/mm3. My eosinophils are down to 17% and my absolute eosinophil is down to 1.7 k/uL. Those are all huge improvements for me; I’m hoping my pharmacist will see this and fill my prescription without question.

I have been living week to week for the past month, never knowing if I’m going to be able to stay on this medication. Every week, I wait for blood work results and then wait to find out if my prescription can be filled. My bipolar disorder already causes me not to have control over my own life. The Clozapine blood work, test results, and weekly prescription fills have allowed me to have even less control than I normally have. I’m hoping that since my blood work results are finally improving, I won’t have to keep worrying about whether or not I can get my prescription every week. I am concerned about what will happen when he increases my dosage again, but I can only worry about some many things at one time. I don’t want to add this to my long list of worries, especially since it is also something I have no control over.

Feeling Shameful – Admitting My Mistake

I forgot to take some of my medication last night. Of course it was the most important of all meds, my Clozapine. Right now, I’m feeling very shameful. The one thing I have going for myself is that I’m always compliant. I always take my medications, I always do whatever I’m told to do by my doctors (no matter how much I really don’t want to), and I always follow through on these things. I can’t believe that I forgot to take those pills.

I got home last night from the trip, unpacked, and was so tired I just fell asleep. I should have realized when I woke up two hours later, that I hadn’t taken my Clozapine. I was in and out for the rest of the night on the couch. Why didn’t I take that hint of not being able to sleep through the whole night? I didn’t realize until I was making the bed this morning. At that time, I saw my meds sitting on my nightstand. My first plan was to pretend it didn’t happen and not tell my psychiatrist. Then, I thought that I wouldn’t be able to live with myself if I wasn’t completely honest. So I sent an email to my psychiatrist and told him exactly what happened. I was extremely worried about what he would say, but his response told me not to worry and that I could still go and get my blood work done today.

I felt a little bit better knowing that my psychiatrist isn’t upset, but I’m still upset with myself. I expect myself to always be compliant. However, I was just told that by telling my psychiatrist exactly what happened, I was still being compliant. Complete honesty is what’s necessary for compliance, and that’s what I have done. I suppose I should give myself a break. Everybody makes mistakes; I need to allow myself to make mistakes as well. I need to stop shaming myself, and begin to be proud of myself for my honesty. As always, it’s easier said than done. I guess it’s just another thing to work on.

Beyond Frustration – Clozapine Refill Issues

One thing after another, it never seems to end. There is always something that needs fixing or needs to be completed. I had my weekly blood work done on Friday and I’ve been checking for the results a couple of times a day. Normally, it’s done and I get the results the same day or early the next morning. For some reason, this week and last week, it took longer for my results to come through, but they finally did this afternoon. Once I know that my lab results are in, I call my pharmacy to make sure they received a copy. I usually spend the first five minutes of the phone call with them telling me they didn’t receive a copy until they finally look in their fax machine to see it sitting there.

They generally talk down to me, as if I don’t know what I’m doing. Today, the pharmacist kept telling me that they need to receive my lab results every week in order to fill the prescription. If only she would have stopped talking, she would have realized that I’m well aware of that and it was even the reason for my phone call. Shortly after hanging up with the pharmacist, I received a phone call from her. She called to tell me that my white blood cell count was high and she was concerned about filling the script. I explained to her that my count has decreased, improved, since last week and that my only current side effect is fatigue/low energy, but it is almost gone. I told her that I would have my psychiatrist call her. Then, she informed me that she would fill the script, but starting next month any time my lab results are off, they would be required to send my results to a central database location. The pharmacist would no longer be able to decide if it is okay to fill the script or not, someone at the central database would have to decide.

Now, I’m sitting here thinking that I could be taken off Clozapine any time if my blood results are off. I’m basically living week to week, never knowing if I’ll be able to get my next prescription of Clozapine filled. It’s adding on so much anxiety to an already stressful life. My psychiatrist says that they need to be concerned about a low white blood cell count, not a high count; however, I have so many more questions.

If at some point the pharmacy, or central database, won’t fill my script, do I just stop the medication immediately or am I supposed to titrate down off the medicine?
What side effects can I expect from going off Clozapine?
What levels of a WBC (white blood cell count) are good, and which are bad?
Is it bad that my eosinophils count is very high? At what level does that count make a difference?
If I have to go off the Clozapine, what medication would replace it? I’m no longer on Seroquel or any other antipsychotic.
How long would it take for a new medication to start working?
How likely am I to have a major episode if I go Clozapine?

Once I know the answers to these questions, I will let everyone know. Hopefully, I won’t have to worry about any of this. Hopefully, my next blood test results will be back to normal. Until then, I am just going to stress over it all.

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.

My Side of the Pole

Bipolar – Mental Health

Tag: Clozapine