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.

Knowing Your Diagnosis

Understanding your own mental health is extremely important. Even though most of us have some type of support system, knowing your own illness is the best way to take care of ourselves. I know that I am diagnosed with Bipolar 1. I have manic, depressive, and mixed episodes. While others may be able to see some of my symptoms, I try to be the first person that can see them. I am aware of the symptoms I exhibit for each type of episode. Knowing my symptoms helps me to catch my episodes before they get too far. Those that I’m close with, such as my husband, family, and best friend are also able to see my symptoms when they start to appear. I can ask these individuals for help to better maintain my mental health.

Hopefully, by paying attention, I will be the first to notice when I’m not sleeping, if I become obsessive, if I have racing thoughts, if I spend too much money, or become overly talkative. These are all signs that I’m becoming manic. I also hope to be the first to notice if I’m sleeping too much, if I feel pathetic or empty, if I cannot find pleasure in activities, if I gain weight, or if I start planning a suicide. These are all signs that a depression is coming. A mixture of these symptoms can mean a mixed episode is starting. I want to be the first to notice my symptoms so that I can get a jump-start on treating the symptoms and episode.

It’s not easy to know and understand your own mental health. Every person’s bipolar disorder is different. Each person has different symptoms occur, and each person has different ways they have found that treat their symptoms. Knowing your symptoms also allows the individual to contact their doctor so he/she can alter medication as necessary. Some of our episodes come from medication changes, from stressful events, from medical changes, or even from out of the blue. The sooner we begin to treat our episodes, and allow our doctors to treat us, the better off we will be. Success comes from knowledge of our own diagnoses.

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.

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…

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.

Overwhelmed and Anxious

I have so many things to get done in a limited amount of time. So many things, such little time to do it in; we’ve all heard that before, we’ve all probably said that before. Right now, that seems to be my life, except I feel frozen. I’m struggling to get things done, even some of the smallest things. All I can think about is all of the other tasks I need to complete. It’s weird to have your brain running so fast but also be frozen at the same time. What do I do now? Where do I start? Sometimes I feel as if I’m outside of my own body. I feel as if I’m looking at myself and all the things I need to do, and still can’t get it all done.

I feel off, something feels off and I can’t pinpoint it. Is it because I forgot to take my Clozapine two nights ago? Maybe it’s because I’m on a time schedule? It could be because I’m dealing with what appears to be a minor depressive episode, hopefully it doesn’t get worse. It could just be because I’m about to go on another trip to visit my family. I love my family and we get along wonderfully, but it’s still stressful. I’m really looking forward to seeing my family. I can’t wait to have one-on-one time with my mom, nieces, nephew, aunt, grandma, and more. There are so many people to see, and I have only one week to get it all done in.

My best friend from high school just reached out to me and she wants to get together for lunch while I’m back where I grew up. I haven’t seen or talked to this girl since I was 17 or 18 years old. Now, she wants to catch up and that worries me. Now that I think about it, this is probably why I’m having so many issues right now. This is overwhelming. I tend to have anxiety attacks when I go visit my friends that I see regularly, what will happen when if I visit with someone I haven’t seen or talked to in over a decade. Thank goodness for Valium. I don’t take it that often when I’m in my normal surroundings, but I know I will go through quite a lot while I’m away. I won’t take more than I’m supposed to, but I’m allowed two 10 mg pills a day, and that is a lot to me.

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.

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.

My Side of the Pole

Bipolar – Mental Health

Tag: Medications