Sometimes I feel like I take too much medication. I take Lithium, Tegretol, Clozapine, Cytomel, Mirapex, and Valium for my bipolar disorder and anxiety. I take Zofran, Cogentin, and Metformin because of side effects from my bipolar medication. I have to take hormone replacement therapy because of my hysterectomy. I also take Percocet and Elmiron for my bladder disorder. It’s a long list of medication.
One of the meds has to be taken on an empty stomach twice a day, but some of my other meds have to be taken with food. I take medication about 6 times a day, sometimes more, depending on when I eat. It feels like all I’m doing is taking medication. I hate the fact that so many of my medications are treating side effects of other meds, but I guess that’s how it goes.
I’ve been hoping that one day I won’t have to take medication, but realistically, I know that won’t happen. This is just something that I have to deal with. I think I wouldn’t care about it as much if the meds actually worked. My depression has improved, but my suicidal ideations are still there. In the end, I know that I’m a lot better off taking these meds than I am without them.
Yesterday was my appointment with my psychiatrist. It went really well. I brought a list of everything I wanted to talk to him about, so I wouldn’t forget anything. It was very helpful. He listened to everything I said as well as all of my requests.
I am now off Deplin, because I don’t feel that it has helped at all. He increased my Cogentin at night for the dystonia, just like I asked. He also said I could get off of the Inositol since it wasn’t working either.
I talked to him about the twitches I’m having in my hands that cause me to drop things. He said there was a name for it, but the only solution would be to go off some other meds, such as Lithium and Tegretol. I don’t want to do that at this time. I told him about the extreme nausea that’s been happening this past week, but we both agreed that it’s most likely from Elmiron, which I take for my bladder disorder. The Clozapine is causing the drowsiness during the day.
He is also going to check my thyroid level, Lithium level, Tegretol level, blood sugar level, and cholesterol. I’m very pleased with this appointment.
When I got home, I took a nap that lasted about 6 hours. I don’t know why that happened, but I couldn’t keep my eyes open. I feel better so far today.
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.
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.
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.
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.
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.