The 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.