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.
Tag: Clozapine
Clozapine Refills Are Getting Easier
Every week I get my blood drawn to check for any possible side effects from taking Clozapine. The medication can cause many serious side effects, and the blood tests are there to catch the issues before they get too serious. My blood work results are finally all within normal limits. At one point, they got so bad that my pharmacist said they may not be able to continue filling my Clozapine prescriptions. We still have to keep an eye out for any issues since I’m increasing the medication slowly. I’m still doing weekly blood work, but I’m almost half way through it. At six months, I get to switch to every other week. At least it’s something to look forward to.
It’s also been getting easier to get my Clozapine prescriptions filled. I haven’t had to call the pharmacy and see if they have my blood work results, which is what I have had to do up until the last two weeks. I haven’t had to call the lab to have them fax over the results again either. The pharmacist is also no longer questioning my blood work because my results are finally normal. I’m glad this is finally getting easier, it’s about time. All I have to do now is hand the pharmacy my prescription, and 30 minutes later my medication is ready to be picked up.
So Many Medical Appointments
This week has been full of doctor/medical appointments. I had my blood work done on Monday, talk therapy was yesterday, today was my gyn to treat my interstitial cystitis. I feel like all I do is go from one doctor to the next, over and over again. My blood work went well this week. I saw the woman who normally asks too many personal questions; she’s quite inappropriate. I was told that I should report her, but I didn’t. This last appointment, when I saw her, she only asked how I was doing. She didn’t try to tell me how I should treat and manage my bipolar disorder. I get extremely nervous when I see her, but now I know that I can see her without having her get inappropriate.
My therapy appointment went well. I actually opened up to him a little more than I expected. I told him some things that I’ve been thinking about that I haven’t told anyone else. It felt good to finally get some of the ideas that are running around in my head off my chest. It would have been better if talking about it made it go away. Instead, it just brought the negative thinking to the front of my mind. I keep going over and over it in my mind. I wonder when it will stop. At least I have someone I feel comfortable talking to about it. I’m not comfortable talking about it here yet, but maybe I will one day soon.
My gyn treats my interstitial cystitis, also called painful bladder disorder, by doing an installation. They are very uncomfortable, only sometimes do I yell or swear during the treatment. I’ve been doing the treatments every week for a couple of months now. Today, I found out that I finally get to do the treatments ever two weeks. I’m ecstatic about that.
I wish I could have a week without doctor appointments. I suppose the next time that will happen will be when I go to Cape Cod, although I’ll still have to get my blood drawn in order to get my Clozapine prescription. One day, I believe I will have a doctor-free week. It may not be today or even this month, but it will happen at some point.
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.
Awake Again…Still
I’m here again on the couch, unable to sleep. This happened last night too, but I fell asleep after a couple of hours. Tonight, I’ve been trying to fall asleep for five hours with no luck. I don’t even have the heavy eyelids that I had yesterday. I consider that funny because all day long yesterday I could barely keep my eyes open and my body was hurting for some reason. Then the night comes, and all of that disappears. I’m wide awake. I figured I might as well do some writing.
I wonder why this is happening again. My Clozapine normally puts me to sleep within 20 minutes, I wonder why it’s not working the past couple nights. It normally works better than any sleeping medication I’ve ever been on. I have been dealing with more anxiety than normal. This is due to my gym workouts, going bowling (my husband and I enjoy going in the summer), my dog has another skin infection (it’s finally starting to improve), and dealing with a lot of bills. When it rains, it pours.
I don’t think I’m going to get any sleep tonight. Oh well, I’ll just have to deal with it for one night (hopefully that’s all it is). When I do finally fall asleep, I’m having very vivid dreams. I can remember the details. In one dream, I had kids. When I woke up, I realized that it wasn’t real and never will be.
Clozapine Prescriptions
My psychiatrist mailed me two months worth of prescriptions. These scripts, for Clozapine, will get me from my 200mg dose up to my target 400mg dose. Each script is for one week worth of medications (because I still have to do the weekly blood work). He sent me everything that I would need to get through the next two months. The scripts are pre-dated, so I can’t fill them until Wednesday of each week.
I will be starting the increase soon, either Wednesday or Thursday of this week. I’m a little concerned about the possible side effects, but I mostly think it will all work out.I’m increasing my dose slowly to hopefully avoid side effects. I guess only time will tell.
I can still contact my psychiatrist any time I need, but hopefully everything with the dosage increase will go smoothly and I won’t have to. My next appointment with him is on August 25th. Until then, I can contact him via email or text if necessary. He will still get my weekly blood work results. If he sees a problem with my blood tests, then he will contact me.
Will I Go To Cape Cod?
For weeks now, I have been trying to decide whether or not I will be going to Cape Cod this summer. My family has been going since before I was born. For the past many years, I go for one week. Timing wise, I overlap with my sister, her husband, and their kids for one day. Then the rest of the time is just me and my mom. It’s great that I get to see my sister and her family. It’s fantastic that I get time just me and my mom. It’s my favorite vacation.
My mom and I get along so well, we’re more like best friends. We usually have the same ideas for what we want to do. We go and lay on the beach for a bit (just a one or two minute walk from the cottage), play some games, take naps, go to see a play, etc. We have the same taste in activities. When I go back home to Connecticut, I get to spend time with my mom, but it’s not the same. This is the only time we get to be alone together.
I’ve been questioning if I was going to go or not because of my bladder disorder. My interstitial cystitis is getting worse and I’m having to get treatments every week at this point. Plus, I would have to figure out where to get my weekly blood work done and where to get my prescription filled. It could be difficult, but am I really going to let these things get in the way of my vacation? I don’t think so. I think it’s time to start looking at plane tickets.
Clozapine Blood Work Change
Since the beginning of April, I have been getting my weekly Clozapine blood work done on Fridays. A couple of weeks ago, somehow the day that I pick up my prescription changed. Instead of picking up my filled prescription on Sundays or Mondays, I’m picking it up on Thursdays.
Since I now pick up the script on Thursdays, it seems a bit ridiculous to get my blood work done on Friday. I’m going to start by changing my blood work days to Mondays. Depending on how things go, I will either stay with Mondays or change to Tuesdays.
All I know is that my psychiatrist and pharmacist should be getting current blood test results. Right now, by getting blood work done on Fridays and prescriptions filled on Thursdays, none of my results are technically current. I’ll see how Mondays go for a while; I have an appointment right now for Monday at 2pm.








