Holding On For Dear Life

Right now, I am holding on with all I’ve got. The Clozapine has caused a huge weight gain. I’ve gained more than 30 pounds in 3 months. It doesn’t matter how much I workout or what I eat, I just keep gaining weight. I know I made a committment to keep trying Clozapine until I reach my goal dose of 400 mg. I still have another month of dosage increases until I get to my goal. When I say I’m going to do something, I mean it. I want to hold myself to my committment. However, it’s easier said than done.

I told my psychiatrist about the weight gain. He told me that there are some measures we can take. However, he is on vacation, so I have to wait until next week. So I know that there is something that could possibly help with my weight gain, but I have to wait another week. I understand that everyone is entitled to go on vacation, but waiting even another day is extremely hard, a week is close to impossible. But somehow, someway, I will do it.

The problem with going off of Clozapine, is that there aren’t many other options for me. I’ve already tried ECT for over a year. I don’t want to do IV Ketamine because the thought of dissociation is terrifying for me. I’ve taken so many medications, there aren’t many options left. I keep questioning my future since my treatment options are getting fewer and fewer. This is when I really rely on my friends and family. So far, I have been shown nothing but love and support. I can do this; I can get through this. That’s what I need to keep telling myself.

Genetic Testing

Five months ago, my psychiatrist had me do some genetic testing. He told me that the genetic tests would tell him how my body reacts to specific medications. The testing would assess my DNA, looking for key genetics. It would be possible to find out which medications would work better for me and which medications I would be more prone to side effects. Basically, this test could tell me which medications would be more difficult for my body to handle.

I agreed to do the testing because it was free through my insurance. Also, I already know I tend to have problems with medications due to my Ashkenazi genes. I figured that more information couldn’t hurt. When the results came, the main thing that they told me was that my body is not able to process folic acid properly. My psychiatrist explained to me that this issue can make it more difficult for any of my medications to be effective.

He started me on a medication called Deplin (L-Methylfolate). It turned out that I knew of several people who started taking the same medication and they found it to be extremely helpful. I started the medication with a positive attitude. However, in the past five months, I don’t see any real changes from the Deplin. I only have more issues, not less. I want to get off the medication, but I can’t make too many changes at one time. As soon as I can make another change, which is not the Clozapine or ECT, I will go off the Deplin. I know that it’s helpful for many people; it just isn’t helpful for me.

The genetic testing also told me which medications I have an increased risk for side effects or a poor response. It’s not a guarantee, it just tells me what’s more probable. For example, Abilify, Saphris, Tegretol, Clozapine, and Seroquel are all suggested to use with caution. I have taken all of these medications at one time; I’m currently still on Tegretol and Clozapine. Some of these medications I had no problem with, such as the Tegretol. Other medications have had major issues. The Abilify caused an extreme manic episode and the Clozapine is currently causing weight gain.

I know that the genetic testing can be helpful for many people, but I haven’t found it to be too beneficial for me. I’m still glad I did it. Even if it didn’t help that much for me, if I didn’t do it, I would be questioning everything all the time. Of course I wish it was more helpful for me; but no helpful information is better than nothing at all.

Dystonia Disappearing

The side effect of dystonia came back a little over a week ago. It’s a side effect of the Clozapine that I’m taking. Dystonia is a disorder that involves involuntary muscle contractions; it is painful and annoying. For me, it occurs mainly in my ankles. A week ago, I started taking 0.5mg of Cogentin twice a day. It has helped, just like it used to help. However, I’m still having some issues at night. I have been taking the nighttime dose with all of my other bedtime medications. Maybe I should be taking the second dose a little bit earlier, such as with dinner. Even though it’s not gone completely, having most of it dissipate is a huge relief for me. Hopefully, by changing the time I take the Cogentin, I can get rid of the dystonia completely. If not, then I’ll have to talk to my psychiatrist about it again.

When Is It Enough?

At this point, Clozapine is causing a few side effects such as weight gain, drooling (increased salivation), and dystonia. I have to figure out when enough is enough. There are medications that can help with these side effects, but I’m already taking enough meds. I’m currently on Lithium, Tegretol, Cytomel, Deplin, Mirapex, Clozapine, Inositol, Depo-Estradiol, and Depo-Testosterone regularly. I also take Zofran, Percocet, and Valium as needed. I’ll probably be adding Cogentin to this list after I talk to my doctor today about the dystonia.

How many more medications can I add to this list? Every medication has side effects, even the ones that I’m taking to fix side effects of other medicines. It’s a vicious cycle. I know I need to take something, I’m assuming Cogentin for the dystonia, because I can’t handle the pain and discomfort.

I’m trying to decide when enough is enough with a medication. I believe that the Clozapine is helping me; however, it is the cause of the three side effect weight gain, drooling, and dystonia. I just can’t figure out if I should stop the medication or not. I made a decision earlier that I would keep taking this medication through the next two months of dosage increases. I have been told that once I stop increasing the medication, my body may adjust to it and the side effects may lessen. It’s hard to make decisions like this. I’ve gone through a long list of meds that didn’t work. Now, I may have found a medication that actually helps, and it causes all sorts of other problems. I know that my other option is IV Ketamine, and I really don’t want to do that. I suppose I will put up with these side effects for as long as I can.

Another Side Effect of Medication

The side effect I’m experiencing is from taking Clozapine. It is a side effect I’ve experienced before from a different medication, Seroquel, so at least I know what’s going on; I’m not scared or nervous, I’m just frustrated. The side effect is called Dystonia. It is a movement disorder that can cause muscle cramping and can effect as small as one muscle group or as large as your entire body. I’m lucky because the dystonia only has an effect on my lower legs, specifically my ankles. At night, or whenever I get tired, the muscles in my ankles start cramping and causing pain. I used to take Cogentin to counteract this issue, but I stopped taking it when I went off the Seroquel because I didn’t think I needed it anymore.

This past week, I have been especially tired because I haven’t been sleeping that well. This past week is when I first started to notice the dystonia acting up again. When it first started, it was just annoying. As each day passes, it gets more and more uncomfortable until it gets too painful to deal with. Maybe it’s part of what is keeping me awake at night. It’s hard to sleep when you’re in pain and can’t sit still because of the cramping. Last night, I went through my medicine cabinet and found my old pill bottle of Cogentin from a few months back. I took 0.5mg last night, and I took a dose about 30 minutes ago. Tomorrow, I will email my psychiatrist and let him know what’s going on with this issue. I will also ask him if I can take 1mg because the 0.5mg does not seem to be working.

Sometimes, it seems as if some medications can cause more problems than they can help. Clozapine has many side effects, and I’m lucky enough to get several of those side effects (that’s sarcasm, just so you know). Although, I suppose I am pretty lucky. The dystonia could have an effect on my entire body, but luckily it is only a problem in my ankles. I try to remind myself that things could be worse. I try to remember to be grateful for what I have.

Clozapine Increase

Last night was the first night of my Clozapine dosage increase. I only went up by 25mg. I knew I was going to be doing this increase for almost two weeks; it’s about time I was finally able to start it. My psychiatrist told me to keep an eye out for fevers, dizziness, or other similar symptoms. Hopefully that won’t happen this time.

As I was looking at the side effects for Clozapine and weight gain was one of the bigger ones. Maybe that explains why I’ve gained and keep gaining weight. I keep trying to lose weight, but it’s not working. The Clozapine is working against me. I hate meds that cause weight gain, it’s not fair. Not like much of anything is fair, but sometimes it feels as if I have to choose between the ability to control my weight and the possibility of being stable.

I think that the Clozapine has been working for me. I want to give it a real try before giving up on it. I will follow through with the next two months of increase until I’m finally able to double my dose. The question is, how am I going to be able to control my weight? At least my husband is helpful and supportive. I’ve gained and lost weight many times in my life. I can do it again this time. I just don’t want to keep gaining weight right now. I’m ready to lose the weight.

I Canceled ECT

Today, I called and left a message for the ECT department. I made the decision last week to stop doing ECT and I even talked to my psychiatrist about it; all I had to do to follow through on that decision was to cancel my appointment. I’m really happy that I’m stopping these treatments because it is way too hard on my mind and my body. However, I’m extremely nervous that I could slip into an even worse depression or manic episode. It doesn’t seem as if the ECT treatments have been helping me for quite a while now. My concern is what happens if it was helping and I just didn’t realize it. If I go too long without these treatments, then I would have to start back three times a week, and I can’t handle that.

I’m taking a huge risk by stopping the treatments, but I also have to listen to my body. My husband agrees that the ECT treatments aren’t helping me. He agrees with my decision to stop the treatments. It’s nice to have someone who sees me every day agree with my decision. It makes me feel a little more confident in my choice to stop. I’m curious how long it will take for some of the side effects, such as memory loss, to improve?

Are there other people who have gone through ECT treatments on a regular basis for a while and then chose to stop? If so, what happened when you stopped? How long did it take for your side effects to improve?

Side Effects or Underlying Issues?

I have so many different struggles that it makes me wonder which difficulties have been there all along, and which ones are side effects of medication or ECT. Something has to change. Whatever it is, I really need to see some improvement. Hopefully I don’t have to wait too long. The three biggest struggles that come to my mind are memory loss, trouble finding the right words when talking (aphasia), and trouble making decisions. I mentioned these issues to my psychiatrist the other day. He told me that the aphasia is most likely caused by the Lithium. High levels of Lithium can cause aphasia in some individuals. Even though my Lithium level is low, it can still cause aphasia. I chose not to make any changes to my Lithium because we are already making a couple big changes such as increasing my Clozapine dose and stopping ECT treatments. It’s not a good idea to make too many changes at once. If something does happen (positive or negative), I wouldn’t know which medication change caused the new effect.

The memory loss is definitely from ECT. Since I have decided to stop doing ECT treatments, I’m wondering if my memory will get better and how long it will take for it to improve. Part of me is curious if my memory will get back to what it used to be; I’ve done 33 treatments and I’m not sure if there are any long-term side effects. Some of my medications, such as Lithium and Tegretol, can also cause memory loss. There is a possibility that some of my memory issues are from the medications, which means it’s possible that my memory won’t return to what it used to be. I guess I just have to wait and see about this issue. I hate waiting.

Problems making decisions is another issue I’m dealing with at this time. This is known to be a difficulty with depression. The only problem is that I still have the same issue when I’m manic or even hypomanic. The problem isn’t going away. I have difficulty making small and large decisions. Sometimes I can’t even figure out what to eat when I’m in my own house. My husband will ask if I want to go do something, like go bowling. I don’t know what I want to do, so I just tell him that I’ll do whatever he wants to do. I think that’s frustrating for him, at least I imagine it would be frustrating. Sometimes, he will ask me if I want something. For example, he will ask if I want ice cream. I respond to him by saying that I don’t need any. Then he tells me that he didn’t ask if I needed any, he asked if I want any. I don’t know how to answer that because I don’t know what I want. I wish this was less difficult to deal with, maybe one day it will get easier.

Out Of It and Perplexed

Yesterday was a rough day, but the interesting part is that I don’t remember most of it. I don’t even remember going to bed. It has to be from the ECT. I feel still pretty messed up today, and that’s not how it normally happens. Apparently, I need another day to rest after this past ECT treatment. That’s very abnormal; usually I’m back my normal self the next day, but not this time. I’m trying to continue on with my day, getting things done, but I’ve having a more difficult time than normal. I’ve crossed a couple of things off of my list, but I don’t know if I can keep going. I was going to change my weekly blood work to Thursdays instead of Fridays, but I’ll do that next week. I can’t handle having another thing to do today. I’m even struggling in my writing today. My brain just is not all there. I’m perplexed, confused, baffled, and puzzled today. Hopefully, I’ll get part of my brain back as my day goes on.

After ECT

ECT went well today. I’ve done it more than 30 times; it’s become normal for me. When I woke up from anesthesia, I felt fine, no pain. By the time I got home, the pain set it, so I had to take a Percocet. I have a pounding headache and my jaw hurts terribly. I’m just waiting for the pain meds to kick in. I wish I could go to sleep, but for some reason, I can’t, I’m just not tired. If I could sleep, it would probably make me feel even a little bit better.

My memory is back to being crappy. I can’t remember where my husband is, although I know I knew his plans before the ECT treatment today. I looked in my calendar and saw that I recently went to visit my family in Connecticut, but I don’t remember any of it. I can’t remember my wedding, that one really bothers me. I went through my wedding album; it brought back some of the memories. That was helpful, but still not enough. I’ll probably watch my wedding video later today. I hate the memory loss. Every time it finally starts to improve, it’s time for another treatment that causes memory loss again. It’s a vicious cycle.

I don’t want to continue (I think I’ve mentioned that many times), but I just do what I’m told to do. One of these days, I’m going to stop being so compliant. I know that my being compliant regarding my psychiatric treatment is extremely helpful, but it’s also exhausting. I’m afraid that one day I’m just going to do what I want to do instead of what I’m told to do. Following my bipolar treatments is overwhelming. I’m going to rest today, or I’m going to clean the house and go play cards with my family. I know I should rest, but I doubt that will happen.

My Side of the Pole

Bipolar – Mental Health

Tag: Side Effects