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.

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.

My Side of the Pole

Bipolar – Mental Health

Category: Side Effects