Latuda

When It Gets Real – Bipolar

/ Robin / Leave a comment

Two days ago, I was notified on my phone that a comment had been made on a post I had originally made on this blog (REDUX) over a year ago. I try to always reply to any comment left on my blogs no matter how long ago the original post was, and to do so as quickly as I can. I believe that when a Reader goes to the trouble of commenting, that we have entered into a conversation and that to be polite, I should reply. It’s the polite thing to do in conversation, right? And, I’m honestly interested in what Readers have to say.

The person implied that they had read the post. Cool…um, not cool. This is what the person said: “This gives me no hope and makes me want to die even more.”

I immediately stopped what I was doing and read the original post. It was heavy. I’ve never hidden the dark days from you. I’ve also never hidden when the dark days change to grey, and then to blue and sunny.

I want you to know that I struggle. Sometimes I struggle every day. Sometimes my heart is full of light and I feel peaceful.

I am linking that original post Original post. I’ve gone back and put some things in bold/italics. I’ve not changed anything else. I did try to reply to the person as quickly as I could in an effort to reach them. I don’t know if they read my reply.

Please feel free to read it. You’re welcome to comment on it here. I stand by what I wrote. It is all a part of who I am and what I struggle with. Bipolar Disorder is not like some diseases that go into remission or go completely away. I will always have it. I will always search for ways to live better with it and to faithfully and consistently practice the things that help me.

Am I better than I was when I wrote that post? I don’t really know. I’m different. My life is different. My world is different.

I just bit the tip of my tongue. That’s different.

Everything is relevant and always in flux. It is what we do in the darkest of times, in the best of times, in every single moment of time that is what makes the difference in whether I live, or I die.

Today, just like yesterday, I choose to continue the fight. I choose to live.

That’s all I can do. For myself. But I can ask that of you too.

Choose this day… to live.

The Aftermath of Latuda & Despair

/ Robin / 5 Comments

solar flareThe Latuda that was destroying me is gone now, though it has left a lasting mark that lives on within me. It no longer provides mood stabilization for my overloaded brain. The good that it may have done is far outweighed by the damage that it has left behind. Often, I cannot speak for long before I lose the ability to be understood. My speech becomes silenced and my face jerks and spasms as though in pain. Large muscle groups jerk and move without my involvement. It all devastates me. I feel locked inside my body, my brain unable to freely communicate even with those who are closest to me.

I’ve recently come out of a period of not feeling anything but anxiety. My actions indicated that I was depressed, but I didn’t exactly feel depressed. Recently, that has changed.

Last week I crashed. I felt the old familiar feelings and thought things that hadn’t consumed me for some time. I looked at all my pills (I have many) and considered how easy it would be to stop. Just to stop.

But, I didn’t touch them. I called my children and I reached out for help. My girls both came to me and loved me… they helped put away those feelings of purposelessness and thoughts that I have no reason to live.

Why have I not taken all my pills? I have no purpose, no reason to burden those around me. You see, I want to have a purpose. I want my life to matter. While I currently feel I have nothing to offer the world… I think, if I don’t give in to the depression that loves me without reservation, that it might be possible to find that singular purpose that is meant for me.

I suffer from Bipolar Disorder Type 1 with rapid cycling and mixed states. Perhaps I am able to find this ever so small spark of desire to find my purpose because in my manic delusional state sometimes I have delusions of grandeur. Who knows, maybe my periodic delusions will give me my missing purpose. I hope so.

I need a reason to carry on. For now, the love of those who care for me is what I am holding on to. I have to wonder… how long it will be before even that is not enough.

At this moment, I don’t want to die, but I am encompassed by a cloak of useless despair.

I desire purpose. I want inspiration. I resisted the urge to give in and bring this fight to an end. Intellectually, I want my end to be celebrated with the acknowledgment of a fulfillment of purpose and leave an honorable legacy that says my life meant something, that I lived with purpose and left a remarkable mark on my world.

I don’t want to be an unnumbered footmark in the annals of the world, but I can’t seem to master what my brain chemistry is doing to me.

Now, it’s time to start my two-hour ritual of preparing to sleep. Maybe I’ll get lucky and I’ll have a temporary respite and I’ll sleep an emotion free night.

Bipolar – Latuda

/ Robin / Leave a comment

I usually check carefully over the side effects and warnings on my new medications. I’ve been taking Latuda long enough that I assumed that I’d do okay with it. But, I guess I didn’t do it because if I had, I’d have noticed right off that the source of my ticks and twitches was probably right in front of me.

From the Latuda.com website: Tardive dyskinesia (TD) is a serious and sometimes permanent side effect reported with LATUDA and similar medicines. Tell your doctor about any movements you cannot control in your face, tongue, or other body parts, as they may be signs of TD. TD may not go away, even if you stop taking LATUDA. TD may also start after you stop taking LATUDA.

I have Tardive Dyskinesia. It is sever and interrupts my communicating with others. It is especially a problem in my classes at the university. This morning I actually had to stop talking. I felt that I had to explain my difficulty because they were trying to listen to me and I couldn’t talk. It was maddening.

This condition may be permanent. I’m not taking it at all now. I stopped two days ago. I hope that as the drug passes out of my system the tic will subside. God I hope so. I’m trying to relax. I’ve noticed that when I get nervous it gets worse. Talk about motivation to learn to chill out.

Bipolar – Tick Crisis!

/ Robin / Leave a comment

tics7089581_sThe last month has been a horror. I’ve developed my facial tick again and nothing we’ve done has slowed its march to make it so bad that I can’t have a conversation. In my classes at University I’m usually very outgoing and participate in class a lot. With this disability, and yes, that’s how I think of it, I can’t talk and participate with the others. It just kills me to just sit there. Sometimes I choose something short to say and I raise my hand and try to say it. My courage is met with stuttering, ticking and humiliation.

On the 10th I went to the ER because it was so bad that I couldn’t be understood when I talked. My eldest thankfully happened to have time to take me in. It was good because she had to translate for me at times. The doctors took me off my last added medication and prescribed me to take Lorazepam. The problem with that is I can’t take the Lorazepam if I plan on functioning. I have classes five days a week and two of those days are in the morning and in the afternoon so I couldn’t just come home and take it. So, it didn’t work. The ER wanted me to see my MD within 3 days of my visit to the ER. I tried, but my MD said that the ER always said that and that it wasn’t necessary. I disagreed. I was still ticking at a 7 out of 10 in intensity. It was a nightmare.

I finally got in to see him. He was of no help. He rudely informed me that it was probably permanent and was caused, he felt, by my Latuda, which I’ve been successfully taking for some time now. He also told me he wasn’t going to prescribe me anything new because he didn’t want me to go to the ER again for it because it would get him black listed at the hospital. I don’t know if he meant that there was a real black list, but he acted as though there was.

I asked to see a neurologist. After some maneuvering he agreed and picked a random one out of the directory and sent the referral through. I don’t think he thought that a neurologist would be of any help. Then he prescribed one of the medications I’d already tried for the tick. The problem with that is I’ve lost track of which medication caused which reaction or positive outcome.

I got ahold of the neurologist on my own and they could tell I was in crisis and tried to get me in earlier than the July dates that were for new patients right now. The helpful lady called me back the next day and sadly told me that they refer ticks to the mental health people and would I like their number? I told her I had it already. She was nice.

I had an appointment with my counselor this morning. Unfortunately, I locked myself out of my house and out of my car. I texted my eldest daughter and begged for help. She left class early and came to my rescue. I did happen to have some homework with me so I spent my time waiting for her doing that.

When I got back inside I called my counselor and got through! I asked her if we could do the appointment on the phone. She was great and agreed. My tick was at about a 5 for most of the visit although sometimes it got worse. She listened to what I’ve just recounted to you of my last few days and weeks and said I need to talk to my med provider ASAP. She put me on hold and went looking for her. Amazingly she found her and she was free so we stopped our conversation short and I waited for Sara, my med provider, to call me momentarily.

The call from Sara came right away. I went over all the stuff again and through asking questions about what new prescriptions I’ve started taking in the last month. I started a medication for restless legs (which worked!) and Lyrica. She has me discontinuing the Lyrica (which is funny because we’ve been fighting with my insurance for months to get it approved) and the last med that my MD had me start taking for the tick. Then she did some research and found out that indeed Lyrica can cause the tick and so can Latuda, which I’ve been taking for some time. Now were stopping the Latuda. I’ve just gone from 120mg to 80mg tonight. Last time we tried to lower my Latuda was during the Christmas holiday and it didn’t go well. Instead of being well medicated and under control, I began to have violent emotions and lashing out at my loving family. It didn’t feel great. But here we are, trying it again. I’m going to have to watch myself.

So now were taking action. I feel better about it. I see Sara on the 11th I think. We’ll reevaluate my condition at that time. She’s not happy with the way this has been handled. The ER should have referred me to my med provider, not my MD.  My MD couldn’t give a shit. I’m looking for a new one. Around here it’s really hard to find new ones. New patient appointments have waiting lists going out months. It’s frustrating.

I’m a communicator. It’s what I do. I am fully involved in all my classes. I can’t do that right now. It drives me crazy. Sometimes I raise my hand thinking I’m going to say something brief. Unfortunately, it turns into a long ordeal as I stutter and tick my way through what I want to say. Sometimes the friend I sit with tries to finish talking for me. It’s embarrassing. I know there’s nothing to be embarrass about. It isn’t my fault I can’t control my mouth. Thankfully I can control the content of what I want to say.

I’ve been using my situation to really make sure that what I want to say will really be helpful or ask a really good question.

My kids have been good about it. They laugh at me when it gets really bad. I’m glad. I can’t take it too seriously (though god knows it is). They help me keep my chin up. And, thankfully, they translate for me. Seriously. Even when I’m just talking to them they have to finish my sentences for me (when I’m at a 7 or higher). I’m thankful for my kids, my mom and my brother for their patience in waiting for me to struggle through a conversation.

So, maybe the next few days will be better. I’m not going to class tomorrow. I’m going to work on calming down. I need the time to rebound and relax. I have a ton of homework to do so I’m going to give myself the time to do it. Lowering my stress can only help my situation.

If you find yourself in a similar situation remember that freaking out doesn’t help. Well, doesn’t help much. Sometimes you get like I did and can’t talk at all and they take you seriously. But, in general, it’s best to persevere and keep bugging people, doing research, calling anyone you can think of till you find the right person to talk to. Now, I hope it works.

Tonight, as with the last two nights, I’m up late with back problems. It’s like all the nerves in my lower back are firing at the same time. I can only describe it as sever lower back pain. I take Oxycodone for that. You’d think that would help my tick and the stress associated with it. Nope. Nada. Zilch.

Sighing…. This tick seems like such a waste of time. I was thinking of getting a summer job, but that will never happen with this tick.

I’ll let you know what happens next. I’m afraid of myself. I’m afraid my Bipolar is going to come raging back like it was in the past and torment me. Hopefully I can use the tools I’ve learned since my last crash to keep me from going into crisis but you know, if it’s going to come, it’s going to come. I can’t stop it. But I can combat it.

So here we go, on my first day with my Lyrica gone and my Latuda going down. I have to admit, I’m more than a little scared. What if I flip out? What happens if the tick becomes permanent? What if? What if? What if? What if I get better?

My back is feeling better now. I’ve sat on ice and now the heating pad. Time to try to go to sleep again. Good night my friends. May you be able to speak your mind wisely and with confidence.

Bipolar – Danger Signs

/ Robin / Leave a comment

solar-flare-1Now that I’m taking 120mg of Latuda again I can consider the signs I was having that I was going into a crisis. I believe it’s important for me, for everyone, to know what happens before we reach a full-blown disaster so we can take precautions and get help early. That said, I recognize that it is often difficult if not impossible to tell when we’re slipping. It’s like standing on a beach when the tide is out. You’re talking to a friend or looking at the beautiful water or a sunset. You’re not paying any attention to your feet, which is unfortunate, because your feet have been slowly sinking into the sand. Now, when you try to move, your feet stick and you fall on your face because you didn’t realize what had been happening while you weren’t paying attention.

The biggest sign that I’m crashing is that I lose my temper violently and in an instant. Most of my life I have been consumed with anger and ill temper. It has kept me from getting to know my family. My father, who is gone now, was as bad tempered and mean with me as I was with him. We reacted to each other like lighter fluid on a bonfire. I believe that he also suffered from Bipolar Disorder.

In addition to a catastrophically hellish temper I was angry all the time. I don’t mean mad. I mean angry like I wanted to hurt someone. My adrenaline was (and is) on all the time. To this day my muscles are hard as rock, cocked as if to lunge into flight or fight. Even after a massage my musculature remains as solid as steel. I never relax.

Over the years I’ve taken medications that cause my face, my jaw in particular, to violently jerk and I can’t talk. I look like I’ve got a massive tick in my face and I sound like I’m hiccupping. Now, when I’m stressed, the tick comes back. As a matter of fact, I’ve been having it happen daily now even during Christmas vacation when I don’t have the pressures of school work. It really frustrates me. It’s so remarkable that people stop talking and stare at my face. It stops conversation dead.

So this time, when my temper soared uncontrollably and I saw my family react to my words as though they’d been slapped, I realized I was in trouble. I thought I was just feeling my temper returning. I felt like I was keeping it under control. I didn’t realize others noticed it until we were celebrating Christmas Day at my brother’s house and I was talking to my daughter and her fiancée when suddenly Sydney stopped short and looked at me as though I’d just stabbed her. I shut my mouth fast. I knew I was in trouble. I had to stop myself from talking the rest of the day unless I was paying attention to what I was saying and how I was saying it.

My med provider and I had a backup plan in place incase reducing my Latuda to 80mg didn’t work. I was to return to the 120mg dosage immediately. So that’s what I did. I couldn’t wait until I was able to get back in to see her in three more weeks. I’m feeling much less volatile now.

I know it is rarely as easy a fix as returning to a medication that I already know works for me. It’s never that easy. This time was an exception for which I am grateful.

We, you and I, impact those around us. Our behavior doesn’t happen in a vacuum. We have a responsibility to control our behavior for our own health and for our family and friends. It’s funny that I say we need to control ourselves because that’s exactly what I’ve never been able to do. Not till I got well medicated.

The take away – be vigilant for signs of crashing. Then take action swiftly.