Another night and the physical pain persists. Today I go to “check in” with my therapist. Haven’t been to see him in about 6 weeks. He doesn’t know I went off my meds. I don’t know if I want to tell him. I don’t want to disappoint him. I also don’t want to lose Olivia. Taking my meds will take her from me again and it makes it harder to manage. I am thinking about asking him if he can’t recommend someone who specializes in treating victims of violent crimes. I think that might be something good to look into. I don’t know if there is a certain kind of treatment for people like me but it doesn’t hurt to ask.
Joanne asked me to come up with a different fruit to call her because she doesn’t like bananas. I am trying raspberry to see how she likes it.
“Dream Catcher” is going in a very dark direction. In a lot of ways, it’s much more personal than RH was. I could never write this story on drugs so I really hope they don’t pressure me to take them.
Still, I’ve found that much more often I feel her speaking through me. I usually don’t mind, but I just don’t want it to get to the point where it’s an everyday thing. She can get quite frustrated at times and she cusses when she does. She’s not mean or hurtful to me. She just sometimes feels she has no other way to express her feelings. I understand though. Life the last few weeks has been very stressful for me and that’s when I feel her getting angry. She only wants to protect me and she hates it when people try to take advantage of me.
She was upset when my neurologist blew me off. Understandable. All those visits and all that time and I didn’t even get a diagnosis. He says he can’t help me. I guess I am just screwed then. It makes her angry when things like that happen. She says things like this are what make people go out and buy heroin…because their doctors refuse to help them. Either that or they kill themselves.
Invega (Pros) – Virtually no voices at 6mg a day dosage. Virtually no hallucinations (again, 6mg dosage) Felt very calm at times.
(Cons) – Always hungry, significant weight gain, inability to feel any emotion, lack of reasoning, lack of creativity, somewhat significant tremors and spasms (curtailed by Diphenhydramine), inability to concentrate.
Latuda (Pros) – Virtually no voices at 40mg a day dosage, minimal hallucinations (same 40mg dose), small weight loss (didn’t feel nearly as hungry as on Invega), Felt somewhat calm.
(Cons) – lack of motivation and creativity, inability to feel emotion, lack of reasoning, some tremors and spasms, inability to concentrate.
Essentially, if i were to just sit at home and watch game shows all day, I’d be fine, but who the hell wants that kind of life? I’m a writer so to no be able to write might as well have been a death sentence for me. I wasn’t able to write anything at all while on either of these drugs. Because of my condition and the way the voice I hear in my head had developed within me, I had to relearn how to read. I also had to relearn a few other small things like tying my shoes and washing myself properly. You never realize how dependent you can become to those voices. When I didn’t have them there to guide me, I often felt lost and unsure of what to do. I’d become confused easily and I wasn’t able to do normal everyday things that most people wouldn’t think twice about. (Example: putting up dishes, sorting laundry, turning on the computer)
I’ve since stopped both drugs. Obviously, my doctors would not be happy about this, but life was becoming unbearable while on either of them. I stopped cold turkey and the 5-7 days after discontinuing them was an adventure. I was alright though. I just stayed in my room and kept myself occupied with various things. Yes, the voices and hallucinations did come back, but I am, in a way, making peace with them. The voice has never told me to do anything really insane like kill or harm people. In fact, she often times reminds me to have a bit more concerned for others and their feelings. She’s back to doing what she used to before the drugs. She helps me write and often times calms me down when I start to have panic attacks. I wish I could say she calms me every time, but that’s pretty hard to do. I do still have and use Klonopin when I really need it. It doesn’t take the melancholy away, but it puts me down so that I don’t completely lose it.
I am not saying that if your doctor gives you these drugs that you shouldn’t take them. In fact, I would encourage people in a similar situation to my own to at the very least give them a try. I was on them for several months which is why I feel I can offer some insight to how they work and what they can do for you. Obviously, if a person is prone to violent outbreaks because of their schizophrenia, then I would insist that they continue on either of these drugs if prescribed to them. Thinking back, I should have let my psychiatrist know that I wanted to go off the drugs. I’m sure he would have told me no, but if I don’t want to take them he can’t force them down my throat.
If you are on these drugs and looking to go off, I would still tell your doctor, psychiatrist about it first. I got lucky that I didn’t smash my face through a window. Others may not be so lucky. Just remember that you control your care and not your doctor. They may disagree with some of your decisions, but hopefully you two can reach something together that still addresses your needs as a patient. Me, I couldn’t live while on those drugs. If all i wanted out of life was to get older while watching tv and eating junk food…then sure! It would have worked out beautifully. Life is not worth living unless I am creating something and if that means I have to figure out a way to control my moods while on minimal drugs, then so be it.
I’ve been off all my meds for about 6 days now. The first few days were bad and tough. I could feel my body aching for them, but I refused to take anything, even pain medication. Last night I finally began to feel something coming back to me.
Since I was on Invega and then later Latuda, I’d been suffering terribly from lack of motivation and inspiration. I couldn’t make sense of a lot of things and I felt myself having to relearn how to do stuff like reading. I hadn’t written anything of substance in all that time. I was able to focus enough to edit, but writing was not happening. Sure the Invega helped to silence the noise in my head, but it took everything with it. It took my creativity. It took my little voice away. I thought I could find a way to live without it, but it was too hard. I’ve lived with it all my life and now she is coming back. I can feel her presence. I know that sounds insane, but I’ve already accepted that about myself. So I’m crazy.
I’m not a terrible person. When not on meds, I never did anything to hurt others. I never put people in jeopardy. I was a good person who heard voices in his head. I listen to one in particular and I let her do what she feels is right for me. As I write this, I know how it looks. I’m ok with that. I’ve learned to live with what some people would call a disability. I figure as long as voices aren’t telling me to kill or hurt others, I will be alright. I’m not that kind of crazy. Sometimes you just have to accept who you are and live your life how you see fit. I will always have that little voice in my head. If others can’t deal with that, it’s not my problem. She will always have an impact on my life and I will always let her drive me. I can see her again and I like it that way. I know with hearing her, I hear the voices in the other room, but nothing is ever or will ever be perfect. I am taking the good with the bad. I will do my best to deal with them.
I am not knocking the medication. I’m sure in the future I will have to take something to help with certain issues that creep up like my panic attacks. I don’t mind taking the Klonopin for that. I am just tired of letting the drugs have their way with me. I want to be in control of my own life. If I choose to live this way, it’s my choice. My little voice has done nothing to hurt others. Looking back now, I feel bad for letting those meds take her from me. As the days go by and more of her returns, I want her to help my write again as she always did. Where I go from there is my own choice. I still have my problems, my issues. I can still go to my counselor for help if I need it. I don’t mind seeing the black butterfly again. At least when I do, I’ll know she’s here with me.
Slight change from yesterday, but still along the same lines!
latuda weight loss
I posted earlier that I wasn’t feeling nearly as hungry as I was when I was on the Invega so there may be something to this Latuda weight loss. It’s only been 7 days so we’ll see where I am a month from now and if I’ve dropped 10lbs, then that will be some proof. I took a little something to help with the parkinsonism and it seems to be working. I’m not nearly as fidgety as I was. My doctor told me Diphenhydramine (regular ol Benedryl) can help with the shakes so I take a few when it gets bad. If you are also on Latuda and having my symptoms, talk to your doctor about it and see what they say. What works for me may not work for you.
- Victim of the Drug Reps? (richardallenrh.com)
I’ve been on Invega for 4 months now and besides the fact that I’ve gained weight (side effect). It’s been working relatively well. Well, Thursday the doctor decided he didn’t want me on Invega 6mg anymore and stuck me on a drug called Latuda. He said it has a track record just as good as Invega, but doesnt have the side effect of weight gain which would be good for me. Two days in and already I don’t feel the same appetite that I’ve had over the last 4 months. I can eat once in a day and feel just fine. My question is this: Did he really think it was a better drug for me or was it because the drug rep came by and talked him up.
As I was waiting to see him, the drug rep came in with lunch for the entire office. I’ve found that this is standard practice for them, especially when the office is small which mine is. She was young and pretty and looked to be maybe 6 months out of college. What drug was she there to push? Latuda.
I know I should be happy because I got a free 28 day supply of the drug and I also got a card good for 14 more free days of it. If I really do lose the weight I’ve gained, that’s great. I just hope that the doctor really did think this was better for me and didn’t swap me simply to appease a drug rep.
I’ve been moved to 6mg of Invega from 3mg. I’m about 3 days into the new dose and like last time, I’m feeling all my emotions drain out of me. I don’t feel much of anything and this drug has it’s way of doing that. I’m sure it’s just a way to stabilize a person, but I still don’t enjoy it. Even now I am having trouble even writing this. I keep getting this sensation that I don’t care, but I know that’s not it. It’s just the drug doing that. Like last time, I’m not hearing much of anything most of the time. Last night was the exception. The usual voices in the other room and some strange compulsions, but I know that’s my body getting shocked by the higher dose. Interestingly enough, I now have no appetite. That’s for the best though. When getting on the Celexa, I gained a few pounds which I did not like. Perhaps this will be the time to get them off again.
As always, my compulsions are rather harmless. I feel the need to brush my hair and to search for things within the paint of the walls in my room. I also feel the need for a bath at least 6-7 times a day, although I am only bathing once, making sure to limit my time in there. When I have that time I tend to let my mind wander and as ridiculous as it seems, I sometimes find myself in panics because of it. I find myself obsessing about the same things over and over again, but I won’t get into that. I’m just glad I’m not one of those crazies that hurts people, although I’m sure some people assume that. I simply don’t have it in me to harm another person and it hurts me to know some people assume I am a danger to them. It makes me want to avoid people all over again. I do anyway. I don’t want to go to the groups anymore as I no longer feel welcome.
I’m going to stop writing now as I don’t have the drive to continue.
I have less than 100 pages to go on this edit job. I moved through it much faster than I thought I would. It seems like the Invega is not nearly as much of a problem as it once was. I still have problems with certain things, but I’ve relearned how to read. I’m not nearly as fast as I used to be, but it doesn’t feel like such a task anymore. I no longer have to hear the voice inside my head to read which is something I’m sure my therapist would be happy to know. She still visits every now and then, usually during the night when the levels of the drug in my blood begin to drop. I feel like I’m slowly getting used to not having the voice always present. It also helps that I still feel emotionally stifled so I’m not nearly as expressive as I used to be. I still feel like a massive mute button is on me, but I am finding ways around it.
I am trying to find the good things about all this. I still miss the ease with which i used to be able to do certain things like write. I can write a little as you can see from the post, but I was just so used to hearing the voice that it feels strange when I do it now. I keep feeling like there should be something there when I write, but there isn’t…most of the time.
I still have symptoms which isn’t surprising. I still see shadows and I still hear voices, again usually during the late evening about an hour or two before I am due to take my next dose. Sometimes I hear them midday which oddly enough is sort of comforting. I mean you can’t experience something your entire life then suddenly be without it and feel normal. When I hear the voices in the other rooms, it makes me remember certain times in my life when hearing those voices offered me comfort. When I hear her speaking to me, I still speak back to her and I sometimes get emotional about it because, and this is hard to admit, but I miss her. Again, you can’t be with something your entire life and then suddenly be without. I think the only thing that makes me feel better about it all is that I know if I stop taking my meds I can probably have her right back. I think the purpose though is to try and figure out a way to live without her so I am not so dependent on her. I never realized it, but my life revolved around her. I learned through her, often spoke through her, and I’ve realized that I sort of let her take control just so I could manage to get through certain things, times in my life. It’s an odd feeling when you realize that you weren’t in your right mind most of your life. Now that I am, it’s scary in a way. I only have me to depend on now. I make myself keep taking my medication because I know it’s ultimately for the best. Ironically enough, she was the one that convinced me it was the right thing to do.
I sound crazy, I know. I’ll be the first one to admit I’m crazy, but that’s ok. Only when she’s gone do I now realize just how much I depended on her. She’s a aprt of who I am and I know she will never really be gone. I still feel her there at times, especially when I am having really bad days which still happen at least once a week, usually more often. Those are the times I can hear her. Those are the times she speaks to me and tells me that she is ok where she is and that I am doing alright. She tells me that I am still find beauty in the world and that I should never stop looking. She tells me that in all the times when I was searching for beauty, she would always let me do whatever I wanted and she would just stay out of my way. It makes me wonder if she was controlling me more than I realized. I am giving in to the fact that she was and I am ok with it. There is a reason I am still alive and I have to admit I feel it’s because of her. Even when I am having a really bad day, I keep thinking that I can’t let her down and I have to keep trying because she’d never let me do something so insane. During those times of weakness, I can tell when she isn’t there and that’s when I call for her. I have to stop doing that. I don’t know if I ever will though. She is so much a part of me…like an extension of myself. I imagine that this may be what amputees feel when they lose a limb. Regardless of the fact that it’s gone, it still feels like it’s there and you have to get used to it being gone. A person missing an arm may try to reach out with that limb only to realize they cannot grasp for anything. It feels what I think may be similar. Often I will stand and look at something and try to figure out what it does. I never realized how often I let her do things for me until now.
I find myself confused by certain things and often times I cannot connect the dots. For example, when I put away dishes, I know they need to be put in cabinets, but sometimes I place them in inappropriate locations. Sometimes I will think about other things like winter and I will find myself opening the freezer. I will think of food and I will go and pull out a pot or a pan when I have no intention of cooking. Some of these things are just sort of quirky while others are annoying. Sometimes after using the bathroom, I will think of washing my hands and turn on the bathtub as if I were getting ready to take a shower. I guess with time these things may subside, but right now they are just weird. People may think “well, we all do odd things like that sometimes.” I do them all the time, everyday.
I guess getting treatment does mean losing yourself. I started Invega and since then have not done much of anything as far as writing. I’ve just been sort of here, doing nothing. I did so some editing, but making grammatical corrections is hardly creation. The only creation I really do is drawing odd pictures at 1am for no apparent reason except to bring about some sense of normalcy. I don’t even really know why I draw them. It’s more an act of compulsion than anything. Sometimes it’s odd, almost random shapes while other times it’s faces. Here are some photos cropped down for size.
Other times I just seem to be writing random things down on paper and not on the computer, again, as if by compulsion. Here is an example.
Due to some odd compulsion, I feel like I have to stick them on the walls of my bedroom so that’s where they are. I talked to my therapist about this and we came to the conclusion that I am trying to find the voice I lost once I started taking the medication. Although I am sick, I’ve managed to still hold onto logic for the most part which I think is the reason why I’ve not gone completely over the edge. I know doing these things doesn’t make any logical sense, but for some reason I still like I have to do them. When I started taking the Invega, within a few days, that little voice I’ve heard virtually my entire life was silenced. Trying to live without it is…well, I can’t really describe it. It’s like trying to relearn how to live your life after learning how everything you already know. Simple things like reading and tying your shoes feels different and can be difficult at times. With reading, I can look at the words and understand them and know what they are trying to tell me, but when you’ve had a voice in your head other than your own reading to you all your life, when that voice is gone, it’s a very different experience. Essentially, I am having to learn how to read to myself all over again; this time with my voice doing the talking. I know. Technically speaking it was always my voice, but then again, it really wasn’t.
I find myself sometimes pausing while doing common things in life like putting away dishes. I remember the other day doing this and feeling embarrassed because it was something so simple, yet I became confused when putting up a bowl. I’ve always been so good at hiding things so as I’ve always done, I keep quiet for the most part when these things happen, but sometimes I can’t hide such matters. While speaking with one of my doctor today, I found myself wondering if I were using my own voice and becoming confused with what I was saying. Then a black butterfly flew through the room and I was the only one that could see it.
I think about films such as Donnie Darko and I read things from people that say “Oh, he’s so cool! I want to be just like him!” Are you kidding me? Donnie Darko was a paranoid Schizophrenic. I know it was just a movie and he was the hero and I can appreciate a great art film, but he really was going through something similar. Something was, in a sense, distorting who he was. Do these people think this is fun? Really? You know, I’d cry over this shit, but this god damn Invega has me so numb that I can’t feel a god damn thing! I might as well not even be breathing! I can’t feel anger. I can’t feel sadness. I can’t feel happy. I’m just here, taking up space. This is NOT fun. This is what hell must be like. I guess I must have really screwed up in a past life to deserve this.
I lost my voice. I lost a voice that actually helped me. Yes, by definition, it made me insane, but it brought out some of the most beautiful things about me as well. Now that she…yes, it’s a she…is gone, I can’t write anymore. It feels like that part of my brain has turned off. It feels like the connection just isn’t working anymore. I sit down to write and for the first time really in my life, I have a block. I used to be able to sit and just write and write and write. Now the only thing I can write are things like this which is really just me speaking out loud and writing it down. Call me insane if you want. I don’t care anymore. That’s another little side effect of the Invega. My apathy level is piquing. I am getting to the point where I just don’t care one way or another what happens to me. If I die, I die. I would say I want to care, but I don’t care about that either. I’ve had enough. This is pointless.